September 12, 2016
A holiday in Kiama, just what I needed after the trauma of closing the shop. A cabin on the cliff edge, overlooking the ocean. Perfect.
John mentioned a ‘twinge’ in his hip when we were setting off, nothing worth talking about. But by the time we arrived and settled in, he decided to take a couple of Panadol as it had become a pain. Cooked swordfish and veggies for dinner, washed down with a glass of Margaret River red.
We were rudely awakened at 3am by a call from the security company, the alarm hadn’t responded to a weekly test, they think the phone is out of order, but base will not be aware if the alarm is triggered. Grrrr. Rang Optus and got them to test the line, then when it proved fine, rang ADT back but still not working. Rang Castle Hill Police and asked them to check if it had been tampered with and waited up till a car arrived and the police checked the perimeter and the fuse box. All OK, but by now it is 4.30am. Great first night.
September 13, 2016
Took a road trip to Minnamurra and Cathedral Rocks as John’s hip was worse today and he didn’t want to walk anywhere. The rainforest trip is on hold till he improves. Found a wonderful bakery, Flour, Water, Salt, and stocked up on bread and sweet goodies. He is now on 4 hourly Panadol and pain is worse. Discussed seeing Bob as soon as he is back from Europe.
Bloody Norah, on top of everything, I got a sudden painful attack of parotitis, so I can’t open my mouth, eat, clean my teeth etc. No lunch for moi, just water till it subsides. It extended through to dinner and John got to savour the beautiful Massaman curry alone. The smell of it was divine, but that was as close as I got. Oh well, I could do with a bit of weight loss.
September 14, 2016
John had a bad night and is in severe pain so I asked the lady in the cabin office if she could recommend a doctor. She lent me a walking stick so he can get around. It is only 400 metres away but I have to drive him there, he can’t walk.
Dr Niamh Sheridan, a young Irish GP, noted immediately that John’s left leg was swollen and found he had enlarged groin lymph nodes. She ordered blood tests, a hip x-ray and an ultrasound. She prescribed Endone for pain but warned he should only take a half every 6 hours.
We rang Shellharbour for an ultrasound appointment and luck was in, she said there had just been a cancellation and to come now. Yippee! Found PRP pretty easily and had the films done. No report in the envelope but a look at the u/s soon showed 2 very enlarged lymph nodes. Uh-oh, not keen on that.
September 15, 2016
I got my feet on the sand briefly, funny sort of beach holiday this has been.
Esther and David came up from Callala Beach for lunch on our deck overlooking the ocean, it was great to see them. John’s pain is severe now and the Endone dose has had to be increased to 1 every 6 hours.
Appointment with the lovely Dr Sheridan at 3.45 results in Endone dose being increased yet again to 2 every 6 hours. She says the only way to diagnose the swollen glands is a biopsy, but we can’t get an appointment this week at Shellharbour, so I make one at Castle Hill for Monday. He says the pain is 8 out of 10. This is getting scary now.
September 16, 2016
I spoke to Robert who advised getting in touch with Professor Dodds at St Vincents for an appointment, just in case. But he retired earlier this year so I got a tentative time with his replacement Dr Nada Hamad, subject to the biopsy of course.
John has had bad pain again through the night. He sleeps most of the morning and when he is up, he has his head over a bowl, nauseous. I pack up the cabin and eat lunch alone on the deck. The cleaners help me pack the car, I get John in and he sleeps all the way back to Sydney, where he goes to bed and sleeps the rest of the day. Pain is under control, just, but he is sick and I am getting seriously worried.
September 17-18, 2016
The auction for the remaining shop stock is held over this weekend and it is seriously depressing. My beautiful things going for a song, probably the last auction I will have reason to attend, my life as a dealer over. But how lucky that I don’t have a shop to juggle along with John’s health problems.
By the end of Sunday, I feel down and negative, scared of the results of the biopsy tomorrow. It feels like the earth has opened, a narrow stone chasm, I am falling down it and there is nothing to hold on to.
September 19, 2016
After a false start at the wrong medical rooms, we get to PRP for the biopsy. My aversion to TVs that I can’t get away from kicks in, but I find a seat to peruse some decent decorating magazines, marveling at the bad taste that a lot of money can fund. All goes well and we go off to see the movie Sully, which we really enjoyed. Off home to sit and pretend we are not thinking about the results. John has no option but to sit in fact.
September 20, 2016
Went up to Windsor to settle a few things, leaving John with Michelle for the morning. Waiting, waiting. John spent time painting the storeroom door and breaking up a pallet for the wood.
September 21, 2016
We were not expecting the results till tomorrow, but at 9am the phone rang and the world changed. Where were you when Kennedy was shot? When the planes went into the Towers? Where were you when the call came through to say John had lymphoma?
Dr Sheridan told John that the biopsy had shown Diffuse Large B Cell Lymphoma, aggressive so she said. I raged while John reacted with his usual calm. But our lives have changed, perhaps for weeks or for months or forever, but changed they have.
We saw Dr Hung at 5.20 and he altered the meds to try to keep him pain free. Targin twice a day, with Endone for breakthrough pain. He queried the helpfulness of an MRI and referred us for a CAT scan and x-ray. All fine in itself, but makes us second guess Hamad, it’s like we are bobbing corks with no clear directions, I hate the feeling.
September 22, 2016
We are off to Dav and Louis’ place to visit while Sue is down from Qld. Loved to see Millie, she is getting to be a little girl now at 7 months. Louis offered to put Windows 10 on John’s computer, one less worry for him, so that’s great. Dav kept things light, but there was still a depth of feeling there.
Frustrating that we still haven’t heard from Dr Hamad, so are we having an MRI, a CAT scan, an x-ray? What? Sitting on our phones. Got a return call from the receptionist to ask what we wanted from Dr Hamad. Instructions!
Passing the fish markets we decided to stop for lunch. A bad move, although the wet fish all looked wonderful, our lunch was a mini disaster. Scallops paid for weren’t received, my soft shell crab was full of guts and fried whole. Yuk, it went into the bin as John wasn’t well enough for me to queue up to complain.
Dr Hamad rang in the afternoon, putting us at rest. The MRI is off, she will contact us with new scans to be done.
September 23, 2016
John had a rare good night. At 8.30 there was a call from Dr Hamad’s office, bone marrow biopsy booked for next Tuesday, not ‘would it suit?’, just ‘be here at 10.40’. A later call books him on Monday for a PET scan (with or without a CAT scan they didn’t say). We are on the conveyer belt in earnest now. Good.
I felt able to leave him and go up to Castle Hill for some food shopping and a pedicure. I needed a treat and it was just the ticket. Hot pink, feels good. Enlivening.
Robert and Sue came for afternoon tea. I had made a sponge filled with strawberries and cream and John bought me a passionfruit tart from C’est Bon yesterday on the way home, so we are well catered for in the afternoon tea department. They are wonderful support at any time, but especially at this time.
Amazing how much more positive we feel now that we have a plan.
September 24, 2016
Drove John up to Sth Windsor so he could keep his appointment with Judith Ridge re her extension/renovation. He explained that he didn’t know if he could do the job but was happy to give her free advice at least. I went to the library while they met, picked up an inter-library loan which had arrived, Christopher Hitchens book on Mother Teresa, he was not a fan, to say the least.
John had an afternoon sleep after taking an Endone as his pain level was up. I cooked (if in trouble, cook) for both dinner and tomorrow when Steve and Deborah come.
Feeling a bit low tonight, no progress today, I need to get used to that. Routine is what gets you through, says John. Action is easier, says Maureen.
September 25, 2016
John needed to get up during the night for an hour or two to quell the pain, seems to be a pattern. The morning went fast and we visited Martha and Phil to tell them the news before going to the station to pick up Deborah and Steve. M and P were shocked of course, and will keep mum until told otherwise.
S and D were slightly early so I didn’t get onto the platform before they arrived, as planned. Had munchies on the deck and lunch inside as it was turning cool. Great to have them here at last. Steve looks so much better then he did, I hope the improvement continues.
We discussed when and how to tell John’s family the news and JMM suggested Simon as the intermediary, though Steve volunteered as well. Deborah suggested that I be the one to contact the girls, initially, and then the wider family, pointing out that this would be the normal course of events, sparing John the stress of retelling the story and hearing each person’s initial reaction. John said later it was a huge weight off his shoulders to know he didn’t have to make the decisions about how to tell his family, something that was troubling him. He finds the whole prospect very difficult to handle.
September 26, 2016
John had a 4.30 am breakfast as prep for the scan. We got to town about 10.30 and got a nearby park. Found the Nuclear Medicine facility and were taken in for a brief recount of the symptoms and history, then an infusion of a sugar solution with an attached radioisotope, which will home in on any cancer. I was surprised that the scan itself took an hour and 40 minutes on top of the waiting time, so, as I couldn’t go in with him for that part, I went off for a walk. Apparently John is slightly radioactive for about 5 hours afterwards so we put off visiting Davina and Millie.
We got a CD to take home to entertain ourselves tonight. What fun!! There was the CAT scan, the PET scan and a composite of the two. It was like a picture of a clear mannequin on a constantly revolving pedestal, you can look straight through it, but there are lots of black parts too. When we saw all these black sections throughout the body John commented that if they are all cancer we are in deep doo-doo, or words to that effect. But we will leave reading it to the expert, I discouraged John from even showing it to the GP on Weds, better to show it just to the engine driver and not to the guard in this case.
Driving home was somehow even more stressful, one wrong lane and we’d end up in Woollongong, or so it felt. Better get used to it girl, part of your job description at the moment, as public transport isn’t an option right now.
Feeling confident I can and will look after John no matter what, but every now and then I realize it might mean there is no John to look after, then I just feel terrified and overwhelmed. Don’t think of it, that’s the only way to cope.
September 27, 2016
Stayed at Lane Cove last night to more easily access the hospital again today. Appointment was at the Kinghorn Cancer Centre this time, with a haematology registrar Georgia, who did the bone marrow biopsy. She was very competent and said she had done 1000 of them. I was asked to leave as ‘some people have fainted’. This is not encouraging to the patient, but I saved my powder for bigger fights I may need to have later and left.
John didn’t find it as bad as he expected, aided no doubt by ‘the whistle’ as they called the pain relief/sedative device. She avoided his bad hip ‘in case there is some bone involvement there’.
We came home to Baulkham Hills and Heather soon arrived with a very large silver bream and some king prawns, plus a lovely card for John. She stayed for arvo tea and a chat and then I made a fruit cake and prepared the whole fish for dinner. Tried a Hawaiian recipe, cooking the fish rubbed with salt, and baked in coconut cream and sherry and it was just delish.
Trying not to dwell on Thursday’s results.
September 29 2016
The big day arrives. We got there early (of course) and went off for a spot of morning tea at Kurtosh, a Hungarian bakery in Darlinghurst. Then a wait at the Kinghorn Cancer Centre to see the famous Dr Nada Hamad. She seemed warmish at first and must have been a speed typist in another life as she took down a detailed history on the computer as John spoke.
But she seemed to think we knew and understood the state of the disease, as virtually no explanation was given. I asked if it were possible this was a new manifestation of the disease, rather than a remission, and she answered ‘no it’s a transformation of the previous lymphoma into something much more aggressive’. OK, but it wasn’t till we got home at 10 pm that I was able to Google ‘lymphoma transformation’ to understand what that actually means, and it ain’t good. It is a specific medical event, not just a layman’s term.
Then she rang a surgeon to book an ‘urgent’ removal of a lymph gland for a more thorough biopsy. In answer to another question she said ‘oh, it’s not just in your groin, it’s here and here and here and here’, pointing to her own body. She went on to say he can’t have CHOP chemotherapy as he has had it twice before, it will need to be something stronger, but more tests need to be done to decide what to use.
‘What if I decide not to have chemo’, says John. ‘Oh you would die pretty quickly’. ‘What, in 12 months, 2 years, or more than that?’ ‘No, without treatment, you would be dead within a few weeks’, she said casually. And if he has chemo, I interjected. ‘The median survival is two years, but it’s a bell curve so it could be somewhat more or less than that’. What if we had never heard of a bell curve???
By now I was realising that we haven’t got a Bob Elliott here or a Glenn Reeves. She rang John’s cardiologist’s rooms but Gemma Figtree is overseas till Tuesday. Slow off the mark she is not.
I forgot to ask for the PET/CAT scan report, but it’s clear I’ll have to do my own research, so I asked Aurora, the secretary. Mmm, I don’t think I can give it to you she said. OK, I said, I will have to wait and ask her myself after the current patient. But soon Aurora said ‘wait right there and I will print it off, but don’t tell a soul!’. She slipped me the 2 page report and as I left she signaled with a finger on her lips. Bless you Aurora.
The report is devastating, cancerous lymph glands in the armpit, oesophagus, stomach, ilium, colon, peritoneum, kidney, groin, next to the aorta and on and on it goes covering 12 outbreaks, many with multiple nodes present. Even a mass in the atlas, the hollow bone at the top of the spine on which your head sits (Atlas holding up the world of course, how arrogant are we humans about ourselves). So much for here and here and here. By now I am getting seriously angry.
We repaired to Bills café for lunch and to lick our wounds at John’s suggestion (when in trouble eat or cook). The phone began ringing, you have an appointment with the surgeon at 11.30 tomorrow, and again, you have an echocardiogram at 10 am tomorrow as we can’t wait for Gemma’s return. Then as we were about to leave for home, more calls. Now there is even an MRI of the brain at 7.30 tonight! It ended up being a bit creepy, no-one around but us and the cleaners (and the technician of course), he had stayed back to do an urgent.
Home at 10 pm to hit Google and find out what the hell went on today and to make sure I had all the 12 parts of the body clear in my mind, and I had. Not that I got any pleasure from being right. I shouldn’t need to be doing this, she had a duty to give us the report and explain its meaning. Fell into bed.
September 30 2016
Another huge day, got up at 5am. Set off at 8 am for St Vincents and got a close parking spot. John had an echocardiogram as his cardiologist is overseas till Tuesday and Dr Hamad wants to clear him for surgery. Proceeded without incident, then we went off to Dr Warren Hargreaves, an oncology surgeon, for a consultation.
He doesn’t like eye contact and ignored me completely until John intervened and introduced me. A man of few words, but with a good reputation apparently. His personality shows in the theatre, hopefully. Upshot was J has lymph gland surgery next Tuesday, overnight in hospital and then a lumbar puncture on Wednesday, poor darling.
It still hasn’t been adequately explained why we need the lymph node removed, “to get more information” just doesn’t cut it. We have a definite diagnosis, so is it for tissue culture? testing reactions to possible chemo chemicals, what? I am so flat today I just didn’t have the energy to engage with him. I will do so when I feel stronger though.
He sent us before noon to arrange pre-admission paperwork. Simple, right? Wrong! First to Maggie for paperwork to be collated, wait, then to pre-admission, wait, then see a nurse, wait, then see Dr Hargreave’s registrar, wait, then wait another hour and a half for the anaesthetist’s registrar. No food or drink except water since 6.30 am, we are famished. We finally got out at 4pm, 4 and a 1/4 hours after going to pre-admission. Ridiculous when you consider that each of the 3 took the same history on paper, the same questions, the answers to which have been related a dozen times to a dozen people, a waste of their time as well as ours. Put the answers on the computer ONCE and each person can add extra questions if they want, it’s not that hard.
We repaired to a bakery and wolfed a pie each, then detoured to John’s to pick up dressing gown and slippers for next Tuesday. Too tired to eat tonight, hot milk for us both.
October 1, 2016
Yesterday John asked ‘am I feeling sick because they say I’m sick or is it the disease?’ You could be getting a cold I said and sure enough he was. That’s all we need with surgery Tuesday, but the anaesthetics registrar made the comment yesterday that ‘we won’t be postponing it except for something serious as we need to start your treatment asap’ so presumably they will plough on anyway.
He made a decision this morning that he needs me to be fit next week for driving and for appointments, so it was silly to risk infecting me, considering it will likely bring on an attack of vocal cord dysfunction as well. Also Davina, Carly, Louis and Millie are coming Sunday and he didn’t want to risk giving it to Millie. So off he trotted home with a supply of cooked meals and some cold and flu tablets. Amazingly his severe hip pain has spontaneously disappeared, what a relief. Now he can drive, walk up the stairs to his flat, do as he pleases.
So I am at home preparing food for tomorrow. Heather came with a beautiful bunch of king proteas for John, they look spectacular.
A funny aside from last week. We were getting a hot drink at a café when in walked a man I thought I recognized.
Me: Oh hello, I know your face but can’t put a name to it.
Him: It’s ok, I used to have a famous face once. I am Stephen Loosely. (We shake hands).
Me: Sorry, I was in business and I live in fear of not recognizing an old client.
SL: I live in fear of people recognizing me.
Later we saw him in the Kinghorn Cancer Centre with a patient in the classic swaddled head attire and gave each other a nod, fellow battlers now in the trenches.
October 2, 2016
A big day. John phoned in the morning to wish me a happy birthday. I burst into tears, I had completely forgotten it was my birthday. I knew the family was coming but had somehow forgotten why. Terry rang with the name of a new immunotherapy drug he had read about, along with the name of the doc in Melbourne who is using it, I will do some research on it.
Got the lunch in the oven, 5 hour leg of lamb with butter beans, tomatoes, garlic etc. Yesterday I had made chocolate orange pots with Cointreau for dessert. The fam arrived about 11 and John about 12.30. Fed Miss Millie her lunch before ours and popped the bottle of Verve that Carly brought. Dav and Louis brought a Black Star Lemon and Pistachio Zen Cake so it was a luxury lunch all round.
Managed to hold it together, John is such a model of strength and acceptance, but I can never match his stoicism. His card read in part “my birthday gift to you………is to stay with you as a happy, healthy, fun partner for as long as I can”. I can’t ask for a better gift than that.
Loved having everyone together today, it reminds me though of what John is missing, year after year, every birthday, every father’s day, every Christmas, never a gift or even a card. Just a phone call from his kids a couple of times a year would make him so happy and it would cost them so little.
October 3, 2016
John insisted on going home yesterday arv so I didn’t get his cold, but it backfired today as he is much worse and wasn’t able to drive back.
I picked him up and brought him here and he went straight to bed, where he has stayed ever since. Made him a soupy ricey thing for dinner as he hadn’t eaten all day, but he couldn’t eat it and asked for a boiled egg instead. First time he has rejected a meal, ha ha.
I’ve never known him to get more than a sniffle before, but he has a godawful dose of it and is coughing a lot, as well as feeling very ill. It is probably his weakened immune system, which doesn’t bode well for the operation going ahead tomorrow. No-one to ask on a long weekend so I will just get him in there tomorrow and they will weigh up the risks of the op on someone so sick against the risks of not being able to start the chemo because they don’t have enough info. My bet is they will take the chance and operate, but we shall see.
Trying to stay calm, but it is increasingly difficult. Powerless doesn’t even come close to how I’m feeling.
October 4, 2016
Yay, we had a win for once. Operation went ahead, he was first on the list so no waiting around. My guess is he got top spot because of his compromised immune system, they didn’t want him picking up any germs from a previous patient. No problems with a/f either, just a bit of low blood pressure.
While he was in theatre I went for a walk, down Oxford St through Paddington to Woollahra, then down Queen St. Haven’t been down there for years, quite a lot had changed, all the many antique shops sadly gone, but all the top line auctioneers are in Queen St now. At the furthest point of the walk I got a phone call to say the op had gone well and the surgeon had said he could go home today instead of staying overnight as planned, so I walked back playing my game of ‘what would you pick in this shop window if the owner suddenly said you could have a freebie’ and I was surprised to find I didn’t covet a thing in all those expensive dress shops, in fact I thought many of the clothes were pretty dire. It feels funny to be doing something in the outside world instead of the medical one.
After a while in recovery we tootled home, I am getting quite used to the inner city driving, though I will be glad when John can do it again. I think they got him out of the place as quickly as possible to avoid infection in that bacterial and viral soup they call St Vincents.
Now if the lumbar puncture tomorrow goes as well……………………………………………
October 5, 2016
The elation of yesterday evaporated into realism in the middle of the night, I spent from 1.30 am to 4.30 am endlessly replaying what’s happened and what is still to happen, none of it good. There seems always to be a scary test or appointment on the horizon. Our new life.
Heather came at 9am with a chicken pie she had made for our dinner, bless her. Then we headed off for St Vincents, got a great parking spot just near Kinghorn and got in on time for the lumbar puncture. Quite a performance for the doctor to read all out the risks, to sterilise and set up for the procedure, then he managed to tap in on the third go. The fluid drains just a drop at a time like a leaking tap and he needed 4 tubes with at least 10 drops in each. Because we were told it was a 15 minute affair, ha ha, I didn’t take my book. Of course it took an hour and then he said ‘you have to lie flat on your back and rest for at least 2 hours now’. So I could have read half a book in the time we were there, but ended up just staring at the walls as I wanted John to rest. That’s the least of our worries though.
Now we wait impatiently for a call from Nada to know where we go from here.
October 6, 2016
John seems to be slightly improved. We spend a quiet day waiting for Nada’s call. When we are doing washing, paying bills, cooking meals or writing a letter to a friend in England, it is nearly possible to pretend that this whole thing isn’t happening.
Jane rang and queried why I hadn’t been to book group for 2 months and I told her part of the truth but not all of it. Later I told John that I felt guilty about the omission and he gave me permission to rang her back and fill her in on his condition. So one more person is privy to the news, soon it will be public knowledge and therefore more real. Jane offered any help we may need with transport or in other ways.
Talking to Steve on John’s phone this evening, there was a second call coming in and I hung up immediately to take it, but too late. It was a withheld number, just as the hospital ones all are, so now I am panicked that it was Nada. I wanted to ring her office but John said no, it could have been anyone, but I feel in my bones it was the hospital. Groan……………….
October 7, 2016
Oh, the frustration!!!!!!!!!!!!!!!
I was determined to call the doctor’s office at 10 am if we hadn’t heard anything by then and at 10 to 10 John had a call from Sue, the cancer nurse from the Kinghorn Centre who has been assigned to him. That call last evening when I was talking to Steve WAS Dr Hamad’s office and they had wanted to fax some prescriptions to be filled. They are steroids to boost his immune system and antibiotics to avoid infections, both important. Also a drug to counteract some negative effects of the steroids. So we rang Bob Elliott’s office at 10 and the fax had just arrived, but was wrongly oriented and half missing. The secretary was about to call them to resend it but then Bob emerged and said not to worry, he would rewrite the scripts himself after his patients were all done. Now it is 1.30 and we have spent another half day waiting for a call.
One drug can only be taken first thing in the morning, so we are snookered on that one till tomorrow morning. I ranted at poor John, saying that he was more interested in finishing a puzzle last night than attending to the possibility that it was the hospital calling. He disappears into his puzzles and it all goes away, how can he be blamed for that? He told me to overrule him next time, he is too sick to always make the right decision.
John has gone off for a nap with a/f, or is it breathlessness from the lymphoma?? Who knows, but if it is the latter the drugs will help. He is certainly slow walking on even a small incline right now.
Interestingly he is eating very small meals which have to be pretty bland, even olives in his salad at lunch were ‘too spicy’. He wants old school simple food. Maybe he’s pregnant on top of everything.
Rereading this, I can see that I am getting very (over?) protective and (too?) demanding of those who are doing their best to help him. Note to self, everyone is doing their best, cut them some slack. Try anyway.
October 8, 2016
Looking again at the last paragraph I can confirm that I am transferring my frustrations to the medicos who have lots of patients, of whom John is only one, but of course to me he is, and always should be, put first. I hope when we get a treatment plan in place this feeling will subside. I also hope it is only manifest here in words and is not showing in person.
We went down to Lane Cove this morning to the computer shop so they can transfer all of John’s files from his old defunct computer to the laptop and do a couple of other things. Moe the owner, who is I think Moroccan and went to uni in Saudi, has been overseas for 10 months now, but the shop is run efficiently by a bunch of part-time friends? or colleagues? who are each there on a different day. When we ask about Moe it is always very vague ‘he is on business overseas’ so today John helped out by suggesting he was perhaps fighting in Syria? I am not sure that was wise when they have his computer but it was very John anyway, so I was glad he is partially back to his irreverent form.
Went alone to First Saturday and enjoyed the talk by Prof. David Isaacs from Westmead Hospital, a paediatrician who went to Nauru and was appalled by conditions there. He spoke out to the press on his return and offered himself up to the Border Force for prosecution for so doing. So far they haven’t taken him up on it despite his requests, of course this would publicise what he saw there and that is the last thing they want. His stories made me once again feel ashamed of being Australian, a not uncommon occurrence these days.
A light moment came when I saw someone piling cheesecake, apple crumble and rice with prawns and peas into a dish for dessert and adding cream. The prawn dish came late and had been placed on the dessert table. When I repeated this story to Michelle this morning she said ‘that explains finding prawn heads in one of the dessert bowls’, so apparently it was eaten too. I once did the same at an African Dinka dinner and the people were falling about with laughter before they told me I had added dessert rice to my dinner plate, but rice is one thing and prawns and peas are quite another…………….
October 9, 2016
John had decided to call 4 of his buddies today, most interstate, about his news. But over breakfast he told me he wasn’t up to it and asked if I would call them. He wants to speak to people about all the normal stuff, not about his illness. Rang Dally and didn’t get on, but got through to Peter Downie, who was sad of course and who suggested he and Dawn come up to Sydney to visit as soon as we think it appropriate. Sounds good.
Went to Tim’s 50th birthday party for a while, pity John didn’t feel like going, I think he would have enjoyed it. Jane called over for a cuppa and offered any help for John that is needed.
October 10, 2016
Rang Dally this morning, he said ‘enjoy every minute together’ and we will do that for sure.
Decided to use the day to catch up on a movie if there isn’t a morning call from the hospital. Went to see Captain Fantastic, a badly named but very good film about a hippie family living in the woods who are forced to confront civilisation. Lots to think about. The end credits were accompanied by Bob Dylan’s song I Shall Be Released and John unabashedly sang along in full voice “I see my light come shining, From the west unto the east. Any day now, any day now, I shall be released.” I shed a quiet tear. He said later the movie had invigorated him, so a good choice. We first bonded on a love of Dylan and a strong dislike of jazz.
On the way home we got a call from Hamad’s office staff to say we have xrays to pick up ‘next time you are in’. I explained that we are waiting for an appointment and would pick them up in the next day or two, she sounded surprised. We were told last Friday we would have an appointment for early this week. Later Dr Hamad rang to say there is a case conference about John on Friday……….groan………how much longer??? He has been (obviously) sick 4 weeks today and her prognosis untreated was ‘a few weeks’. Is it Russian Roulette we are playing? She said treatment will start next week after decisions on Friday of what that treatment should be. I was upset at the news, but John didn’t voice any qualms to her and looked at this as just the process we have to go through. More patient and accepting than I, as usual.
Sooo……… John suggested we go back to Kiama tomorrow and resume our fractured holiday, they only have 3 nights available but better than nothing. Lovely Leone in the office remembered how sick John was and upgraded us to a cottage, Penguin Palace, normally $200 per night, for $150. Don’t know when we will get another chance to get away and we have the great GP in Kiama to fall back on if needed. Sounds blissful.
October 11, 2016
It occurred to me during the night (when such things tend to occur) that John told Dr Hamad on our visit 2 weeks ago that he was in acute pain, only somewhat ameliorated by Targin and Endone. She prescribed another neuropathic pain killer, but before the script was filled the pain disappeared spontaneously. Since then he has spoken to her 3 times I think and not once has she asked about the pain. So as far as she is concerned, he is still in debilitating pain, he has never mentioned that it disappeared. Strange behaviour to me.
Got off to a good start and had morning tea with Dav and fam at their waterfront rental house at Austinmer. Absolute cliff edge, no kids allowed, but Millie can’t crawl so she scraped in. Had a play with Millie and then we headed off to Kiama and our cottage.
Before long we were watching whales frolicking from our deck and then on a walk along the beach. They seem like humpbacks according to my whale identification literature. White under the tails and with a hook-like hump on their backs, the killer whales also have white tails but a shark-like fin which these definitely didn’t have, so humpbacks it is. Must have been there for more than an hour after we first spotted them. In luck.
Humpback whales are conscious breathers, which means they have to remember to breathe, even while ‘sleeping’. Whales do rest but they do not fall asleep the way we do. So rest well giant creatures, I will think of you tonight as I go off to sleep in my dry bed.
October 12, 2016
Dropped off a thankyou card to Dr Sheridan’s office, she was everything you would want in a crisis, professional, astute, fast-acting, with a large dose of warmth and empathy.
Went to Minnamurra Rainforest Reserve and did the riverside walk and part of the falls walk. I used to love walking to the base of the falls but sadly, 20 years ago, the whole left side cliff face at the falls collapsed, closing that track forever. Still great to wander through the red cedars, strangler figs, ferns in the dappled light of the valley.
Stopped off at Jamberoo and looked through its antique shop, tiny, but beautiful stock, no vintage at all, just quality antiques including jewellery. It has been there since 1978, which made me think again of needing to close mine, but then the man told me he had inherited the shop from his grandmother whom I had seen there in the past. Somehow passing mine on to a someone would have meant a lot, but it was not to be. He commented that his grandmother was worried that her mother had died of gall bladder cancer so she went onto a liver cleansing diet and then got gall bladder cancer herself and died. He thought it was cause and effect, but anyway it’s a good excuse for me to keep on with cheese, butter and cream.
After lunch at the cottage we went to the Kiama Farmers Market and stocked up on fruit and veggies. When we got back John suddenly said ‘oh, we forgot to have an icecream at the Kiama Pines Dairy stall. Come on, let’s go back’. So we did and he had cherry while I had cinnamon and rhubarb, we sat and listened to the live music at the market till dinner time.
John got a call from his landlord, Link Housing, telling him they wanted him to go with the CEO to Melbourne for a housing conference, all expenses paid. What a shame, he would have loved that, but he was forced to decline.
We had a spa bath after dinner, J with his mineral water and me with a mini bottle of Moet, neither of us want to go home.
October 13, 2016
It has turned cold and windy, so we decided to go and explore the Little Blowhole near East Beach. In Kiama suburbia between two houses, I wonder how they will feel as it becomes more popular over the years.
Went up town and got a box of chocolates for Leone and the team at the park office. They were so good to us when we were here a month ago and each commented on how well John looks now compared to the first visit.
Had a lovely afternoon in front of the fire, reading Willacy’s book Fukushima. What an avoidable disaster the nuclear meltdown was, a combination of short-sightedness in design, corporate greed and government neglect of nuclear regulation. As usual the company made all the profits and the tax-payers picked up the bill for the clean-up, up to $68 billion so far from memory. They originally said 40 years to decontaminate the site but now admit to it being way more than that. Depressing stuff, but with extraordinary stories of bravery from individuals at the plant and in emergency services.
Ended the day feeling rotten with John’s cold, so off to bed with a dose of cold and flu tabs.
October 14, 2016
Amazingly, woke up feeling much better and sat watching a man with a drone on the cliff top right outside our kitchen window. Being a gig, I went to question him and it turned out he was a professional drone pilot, part of the government’s research project on shark detection. I found it hard to believe we were paying out money for something so sensible and worthwhile. It sure beats the nonsense of culling them, which should only be considered if they start chasing us up the beach-side streets.
Drove up through Jamberoo to Robertson to visit Michael and Jan Breen. Sat in their sunny courtyard and jawed for a relaxing couple of hours over morning tea. Impressed with their strikingly beautiful chooks, a dozen of their mostly deep brown eggs now grace the fridge at Chez M.
John discovered he had received a message while we were there about an appointment at Kinghorn on Tuesday morning. For what? unbelievably, the message didn’t say. My anxiety returned immediately, then later during the trip home I answered his phone to Dr Hamad, who told us the case conference this afternoon had decided he would have R-DHAC chemotherapy (Rituximab, Dexamethosone, Doxorubicin Hydrochloride, ARA-C Cytarabine and Carboplatin) and Tuesday was to ‘discuss the protocols’, not with her, but with the chemo team. I raised the question (reluctantly on the phone) of the three papers I had read that reported best results for double-hit lymphoma were achieved with R-EPOCH. She agreed, but said he can’t have this because of his previous bouts of treatment with CHOP, I gathered this would have made him resistant to the effects of one of the drugs in the R-EPOCH mix.
I then asked about the new magic bullet Keyrtuda and whether that was a possibility if the R-DHAC failed. A resounding NO to that one. I persisted: Is that because it is still experimental? YES she said, it is not something we can use ‘in this setting’. What does that mean? Because he’s a public patient? Because Kinghorn doesn’t have a clinical trial for it? Because it is too expensive? All questions for another day, not in a car on the freeway with difficulty hearing. But she added that on Tuesday they would discuss the pros and cons of stem cell transplantation after the chemo. We see her 3 weeks after the first treatment, so I will try then to get answers on the Keytruda question.
October 15, 2016
We have discovered that a call from Dr Hamad ends up making us more, not less, anxious because of all the unanswered questions or unclear answers which lead to even more questions. Is the chemo palliative? curative? what is the prognosis with chemo? None of these will likely be answered by the chemo team, they need a doctor’s understanding. Pretty soon I can see us saying ‘not one step further till we get some answers’.
John asked me last night how he would die from this disease. I guessed and said it was likely from infection, unless an important part of the body became affected and then it could be from failure of that system ie the kidneys. He wanted more certainty, so I asked Dr Google who pretty much agreed, saying it would either be over a few days from an untreatable infection, or else from a failure of lungs, kidneys etc, or suddenly from internal bleeding. This is why a prognosis is difficult it said, as one person could have many sites in unimportant places and another could have one where it really matters. I only consult the most trusted sources ie the Mayo Clinic or major, usually US, teaching hospitals with online advice, but I shouldn’t need to be doing this.
We need Dr Atul Gawande to go in to bat for us. In his books he talks about first asking the patient ‘what do you want to achieve with this treatment?’ and going from there. I so wish he was on our team. I have read his medical philosophies for years, yet now when we really need them, we feel we are on a rock on our own with the cancer shark swimming endlessly around us.
John was in fine form today though, steroid high perhaps? He spoke to Jane and to Rodney and was super positive in both conversations, no mention of our communication woes and very positive about the prospects for the treatment. Better that he has left last night’s lows behind. Had Peter and Dawn Downie from Canberra here for dinner tonight and it was great to be with them. I love Peter, and Dawn and I are political and social bedfellows, so always plenty to talk about with both of them. John took the floor and was full of stories which Dawn promised to harness into the start of a book. He was definitely energised by Panafcort I’d say. He’s only sleeping a few hours a night since being on the steroids, but seems to get through the day ok, quite energetic, mentally and physically. Ha, must mention that the gutters need cleaning……………….
October 16, 2016
What does one do when given a few weeks to live without treatment? Ha, it’s obvious, one goes and buys socks, many pairs thereof. John was down to a few decent pairs, so he used his $80 David Jones Gift Card this morning to buy, not two or three, but 12 pairs of socks, 3 of them various denim colours to go with jeans, 5 pairs of more conservative black ones, each with a different coloured heel and 4 different pairs of brightly coloured Swedish Happy Socks in polka dots, and Escher-like patterns. Do your best lymphoma, but be warned I am armed with Happy Socks!
Went to a picnic at Georges Head for Bronwyn Butler’s 70th, great time of day at 5pm, with guests bringing a plate, a nice friendly casual affair. Great idea.
Last night he only had 2 hours sleep though, so we are going to see Bob Elliott at 9.30 tomorrow to see if he can help with that, then hopefully Susan the cancer nurse in the afternoon and Dr Hargreaves the surgeon at 4.30.
October 17, 2016
Where do I start? I rang Susan at Kinghorn to say we were unhappy with the idea of going into chemo with no idea of the stats about its effect. She said we would get some more info at the chemo tutorial we were attending at 4 this afternoon, except we had no appointment there today. Another stuff-up, they forgot to contact us. Then we found the chemo is due to start tomorrow and we are clueless about the decisions made last Friday about the efficacy of it.
We were coincidentally at Bob Elliott’s surgery when all this took place and he said ‘you are supposed to just take a number and get on the ride when you are called.’ His student must have been bemused by our interactions, including my swearing, then the hug at the end and Bob’s invitation to take us to the polo in the Bentley when John is better.
I had finally got to the end of my rope and let poor Susan have it with both barrels, though with no criticism of her. No, we don’t want another call from Dr Hamad, but we must see her before we go one step further. She rang back to say NH will fit us in at 1pm. Raced into town and we told the good doctor that we feel we are on a conveyor belt with no known destination. She explained that the best chemo for this illness is R-EPOCH, but it can’t be given because one component of the 5 was in the R-CHOP chemo which John has had 12 times already, so it won’t work again. So he has to have R-DHAC, a second best choice, and there are no statistics to back up its use, but it was the best solution available.
She explained that he has two types of lymphoma concurrently, indolent follicular lymphoma, which he’s had forever and the aggressive double-hit diffuse large B cell lymphoma which is the one which will kill him within weeks and to which the chemo is targeted. The brain MRI had shown no brain involvement but some odd signs which could indicate it may be happening. So, the plan is to kill off the DLBCL with the chemo (curative, hopefully), but we have no chance of killing off the follicular one, though that is easily treated when it pops up from time to time. See how easy it is to explain? That’s all we’ve asked for.
A pie for lunch, then to the chemo tutorial. We came home with a heap of reading. Salient points? He is very vulnerable to illness, hygiene very important, also he needs pregnancy diet ie no soft cheese, pate, deli meats, pre-packaged salads, sushi, raw meat, eggs or fish, mayo. I must be careful also, use gloves to handle bodily fluids, wash spills in machine in hot water, long cycle, no sex without condoms she said!!!
Called in on the kids on the way home and gave Millie her koala puppet, to which she just giggled, she recognised it as a funny face.
Chemo is all day tomorrow, 12 hours, then 6-7 hours on Weds and Thurs, repeat every 3 weeks, intersperse with blood and other tests and appointments with the doc. Hold on for a steep ride. Wheeeeeeeeeee!
October 18, 2016
No problems with the Mabthera (monoclonal antibodies) infusion today, we were there 9.30 to 4, less than they had told us to expect, as he had no negative reactions I think they were able to speed it up the drip a bit.
Everyone was very professional and kind, the surroundings are pleasant and he was fed and watered in a basic but adequate way. So day one, success. Too tired to write tonight.
October 19, 2016
Rang Genevieve early and told her about John’s situation. She will ring Annabel. She rang back shortly after and asked who in the family knew and said she would inform the wider family by email. John felt email was inappropriate for this sort of news, people can’t ask questions and it is impersonal, so he asked me to ring Rachel and Simon, both of whom said they were glad it wasn’t conveyed to them by email. Simon will ring his brothers. Jane offered to inform Teresa and said Cathy was ill and shouldn’t be told at all. John is firm that he doesn’t want to make these calls.
We were longer at Kinghorn today than we expected, 10 till after 4 while he had a drip of Dexamethasone, followed by Carboplatin and then Cytarabine. None produced a negative reaction. I am surprised at how many young people there are having treatment, I expected a bigger percentage of oldies.
Surprised to discover John isn’t allowed do anything with dust, soil, potting mix or wood shavings, carpentry is expressly forbidden, he was looking forward to doing 3 different woodwork projects which will have to be postponed till next year.
We had a little treat, dinner at Thai Nesia on Oxford Street and found, as in the first visit there last year, that we were the only mixed sex couple there. Odd to be in the minority for a change, got a few quizzical looks with smiles as if we had wandered into a private club by mistake. Good food, as last time, barramundi with green mango salad and cashews.
Dan rang after 8 and said they want to come down and visit John on Sunday for afternoon tea. Of course John is excited.
October 20, 2016
The prof via email thinks maybe my going to book group might be tempting fate, infection wise, will talk to him more on the question. Oh those festy book-groupers, you’ve got to watch them.
We got the lovely Noni again today for chemo, she and John carry on a flirty repartee, while he grins from ear to ear. Sometimes she sings.
He is always there the longest, others come and go for maybe 2 hours or 3, John is always the last to leave, having been on the drip all day, though one lady was as long as he was today, but she had 2 blood transfusions after the chemo. They told us today that I need to give him an injection after each cycle, we came home with a kit for that purpose. I told him I want a frilly nurse’s apron, perhaps a mini skirt as well, with a little hat bearing a red cross. Could look fetching and rival Noni.
Opened a nice new bottle of salad dressing at dinner, a change from the usual lemon and olive oil, then John noted it contained blue cheese, one of the many no-no foods, mmm, I am still learning.
Jane rang to say Genevieve had called her, she asked Jane to let John know that Gen was busy with work and would come to see him at Kinghorn during the next cycle, that’s in three weeks.
October 21, 2016
Last night I woke up at quarter to 4, to see John lying there awake, obviously waiting for a pal to talk to. So I pressed his talk button and he talked non-stop (I mean non-stop, barely drawing breath and not requiring answers) till 5, covering politics, sociology, privatisation, family issues, medical ones, prisons, the seminary, his mother, pornography, Brazilian waxing, politics again, …………….oh the joys of steroids.
He surprised me with a hot breakfast today, we had plenty of time to eat in peace, after the last 5 days at Kinghorn, it was a luxury. I wonder how much longer he will be as good as this, we both focus on the day and accept it will get worse before it gets (hopefully) better.
I was determined to get my closing bookwork for the shop substantially finished today, so I attacked it after breaky and kept at it till mid-afternoon. Have pretty much finished apart from cheques which will come in from the auction. Got the GST figures for the quarter off to the accountant. John went up to the cartridge shop and invested in a top of the range printer, he is on a buying spree at the moment, good luck to him. Robert came over with a gift of a book for John, Bush Heritage, signed by the author and by Bob Brown, JMM is stoked.
I managed his injection ok without the little nursey outfit I wanted. He said it didn’t hurt a bit, but I think he spoke with forked tongue to give me confidence. Got a call to say Dr Hamad wants a PET/CAT scan before the third chemo, I expected this to happen after the third cycle, not in just a few weeks, it fills me with dread in case there is no improvement. What then??
October 22, 2016
Did a bunch of food shopping which John insisted on paying for. Did some baking for tomorrow and had an afternoon visit from Rachel, which was great. Simon sent some links on double-hit lymphoma, two I had already, but a very good one that I hadn’t come across. http://www.dovemed.com/diseases-conditions/double-hit-lymphoma/
John asked me to contact his American relatives by email, I will have to put a bit of thought into that one, but he is determined not to do it himself. Phone might be better, will think on it.
Tonight he is writing his bucket list. I keep hearing the contents, he calls them out as I type this. Trips to Venice, England, Ireland, NZ and various Australian places are on there, as well as finishing writing his 2 books, giving a lecture at Tusculum, the architecture headquarters, designing and building a plant stand and a lych gate and a couple of other small design projects. Then we get to the Masters in Heritage Architecture……. This is all on top of his desire to go to lots of good movies and theatre, lots of dining out, meeting with friends and local time away particularly in Kiama/Gerringong. Oh, also following the footy and playing table tennis, he adds. He is still writing as I wind this up. Phew!!
October 23, 2016
Pretty quiet day, researched a supplier for N95 respirator masks that they use at the hospital, so John can go out more and also mix more easily here without fear of infection. They were for sale singly at Chemists Warehouse on the net so he went up to their shop, and 3 others, but they knew nothing of them. So I went onto a wholesale website in Brisbane and was able to buy a quantity direct from the supplier, to arrive by courier next week.
Annabel, Dan and the girls came for afternoon tea. It went well I think, to John’s great relief. Annabel said she doesn’t think Genevieve is planning to come out here, she thinks he probably won’t see her till his next chemo in the city on November 8, which he is sad, but resigned, about.
October 25, 2016
First lovely thing, Justine rang early from Hawaii, which cheered John immensely. She said she is thinking about coming over to see him. Great news, I look forward to a real interaction too, rather than facebook, email or telephone.
Second lovely thing, a heavy wooden box of superb fruit packed in straw arrived on the doorstep, from Snowgoose, sent by Carol and Jack. They looked too good to eat, like a piece of French art, but we nibbled some of the grapes, which were divine.
John can’t get his new printer working as he has forgotten the admin password for his computer. Tonight I am at John’s and neither computer will connect to the internet for reasons that are unclear.
God, computers are the bane of our lives lately.
October 24, 2016
I went up to Windsor, went to the library, did some banking and ate takeaway sushi at the newly opened sushi bar. Can’t walk far there without stopping to talk to people I know.
John took his computer up to the printer place and left it there to get the printer software put on, part of the purchase deal. After he came home at 5pm I tried to use my computer and the battery won’t charge, then it gave out half way through writing an important email to Sandy, my accountant, regarding the final GST and also the closing down of the business. It needed to be there tomorrow, but we have zip computer availability in this house tonight. Did I already say computers are the bane of our lives lately?
I am finding that I can cope with John’s illness, but if any other thing at all goes wrong, I fall in a heap. There just isn’t room in my brain for more problems than I am already dealing with. It screams OVERLOAD and I want to crawl under the doona. But meals need to get on the table regardless.
But we finally managed a trip to Manly this afternoon so I could get a haircut. Then we picked up some of the lovely rye bread from the German bakery, and later ate a cheap and cheerful dinner, finishing with a Movenpick icecream, the best of the commercial brands. We each had a scoop of maple walnut and one of macadamia. Reminded of us of staying in the Movenpick Hotel in Dubai and eating their icecream in the foyer.
Only downer of the day is that John has come out in red spots like blood blisters inside his mouth, as well as an ulcer. Strangely they don’t hurt, but we rang the cancer coordinator as instructed if this happened and she will speak to the doc. For now, he is rinsing every two hours with a solution of salt and bicarb soda. First chemo symptom apart from changes in taste, I guess we can expect more.
October 26, 2016
Up early to go off and mind Miss Millie for the day while Davina does a course. I allowed a generous hour from John’s place to Erskineville and it took an hour and ten minutes, ridiculous traffic and getting worse every day. Millie and I had a lovely day, she appreciates my silly voices and sillier dances like no one else.
I am so lucky with both my girls, they haven’t missed ringing a single day since John got sick, I know I can count on their unqualified support and that is such a relief to me. But it is also a tribute to their relationship with John.
John’s mouth is much improved, his nurse Sue rang this arv to check he was ok, mouth ulcers are a red flag in the chemo department.
John enjoyed having our friend Alison over for afternoon tea today, he baked her an orange and almond cake while I was out babysitting, they are very fond of each other.
October 27, 2016
We decided to go to the first session of Woody Allen’s new movie, Café Society, it wasn’t five star but certainly worth seeing, with all of his usual interpersonal complications. There were only six people in the theatre so we could cope with his infection control precautions.
Another computer whinge, my old PC went in to be fixed and they said it wasn’t worth fixing but they could remove the files onto an external hard drive. $110 for trying to fix the machine and $79 for the download onto a hard drive John already owned, except today when we picked it up all the files were empty! So I paid the $110, fair enough, but I was less than impressed to find I still had to pay for the download even though it didn’t work. What did I say about me and computers at the moment?
John’s mouth looks much worse now, blood blisters, ulcers and what to me looks like thrush on his palate. I will try to get him a GP appointment tomorrow as I don’t want to be without medical support over the weekend if it gets worse. Things happen Fridays.
The ordered respirator masks arrived by courier from Brisbane so that will help with keeping John out of trouble infection wise. They block 95% of infective agents, much more than the surgical masks that doctors use. He looks like a frog, or maybe a duck, in them but who cares?
October 28, 2016
Went up to see Bob Elliott about John’s sore mouth, he said we are doing as much as we can for now, but if it gets worse there are some medications he can offer. Peace of mind.
John got his fandangle new printer and is as pleased as punch. Sandy finished my accounts and will post me a document to take to Centrelink to prove I am no longer earning and need to be a leaner, not a lifter, from now on. Suck on that Liberals.
Not going to book group tonight, fear of infection would make it a bit stressful and it was interesting that although John had been saying it was fine by him for me to go, he now says he is really glad that I decided not to. I missed it though.
October 29, 2016
I had a bad night, still awake at 2.45. Sometimes the doom and gloom sets in and I spend the night hours tossing over various negative scenarios. Other nights I sleep like a log.
Michelle came over for morning tea and we lounged about talking for a couple of hours.
I have discovered John is even more of a punctilious bureaucrat that I knew. If there is a rule, he extrapolates it to the nth degree, ie be careful about handwashing, so constant washing is now interspersed with hand sanitizer, then he went to using paper towels instead of a hand towel and we had to go to the shops to buy a big supply. I feel disinclined to make too many suggestions as I know he will take them up with such gusto, but at least I can sometimes say stop, you are being a pedant, and he listens.
Happy reading till John calls that there is a snatch on late ABC News on aggressive lymphoma and a new (unnamed) drug which is doing wonders in clinical trials. They want 100 volunteers and interested people are to go to the website of the Leukaemia Foundation, except there is no mention of it there. Just before bedtime is not when I want to start wondering about whether John would be better in this trial than on his chemo. I wake up with the terrors at 2am about whether we are on the correct course.
October 30, 2016
Had a lazy day at home, restocked the important icecream supply with passionfruit, did some calculations for Centrelink which seem to indicate I will get a small pension till next July when it will become a full one. My income from the big sale in the shop in August will be divided over the year, putting me above the income threshold, though I am ok on the assets. But by next year the Libs might have changed the rules yet again, boo hiss.
Carol and Jack came for dinner bearing roses and fresh eggs. Had a lovely evening. We are lucky to have so many good friends.
October 31, 2016
Went up to Windsor Library and put in requests to get a number of books from other libraries. Once I was told I am referred to there as ‘the inter-library loan lady’ but they are always happy to oblige. Warmer people than my local library, better variety of books too.
Called in on Donna and Roger at Windsor and were treated to jam and cream sponge for morning tea, looking out over their beautiful view of the Hawkesbury. John filled them in on his trials and tribulations. Donna offered to John-sit if needed, great backup.
November 1, 2016
Had a lunch today for John’s mates, all ex-priests, who meet once a month in a club, but that’s not ideal for him at the moment, so they came here. Had it out on the deck. Just spag bol with red or white wine and a pineapple and raspberry upside down cake to follow. Seemed to go off well and they will come back in early December for a Christmas lunch.
Rang the Leukaemia Foundation about the item we saw on the ABC about an apparently successful new drug for refractory lymphoma. She says their latest newsletter has more on the drug, called BGB-3111, and also an article on double hit lymphoma. The clinical trial is in Melbourne though, I think. We need to keep on top of this stuff in case the chemo fails. I wonder if Nada will approve of this one as a possibility. Snezana will ring me again tomorrow to put John into their system so we can access clinical trial and other data.
Looked up some papers on BGB-3111 and it seems to have had great results on some lymphomas, but not on DLBCL. Feeling tired and a bit low tonight so I am heading for an early night.
November 2, 2016
Planned to deliver the last piece of shop furniture today to North Sydney but discovered that the garage roller door motor wouldn’t work and some idjit has pressed the lock button on the wooden door from the inside so we are snookered. Rang the lovely man who installed it, but not a lot he can advise except that he will come Friday to try to get in to fix it. Funny that it happened on the only day we really needed to get into the garage.
Picked up the unsold shop stock from Barsby Auctions, which was to go in the garage of course. No-one wanted the bronze bust of Menzies which is kind of a tribute to their taste.
Had elevenses at C’est Bon in Rozelle on the way to inspecting the Boystown house in which we share 3 tickets. Decided we liked the décor but would need to get a cab home from the main strip as it is quite far and in a hilly area. John planned the positioning of his tool shed while I worked out which room will be our bedroom. Mission completed.
Attended to a few other chores on the way home. Got a call from Snezana to organise putting John on the Lymphoma Newsletter list so we can see any clinical trials coming up. Heather arrived with a huge snapper for our dinner. So big in fact that I halved it and we ate the tail section, oven baked with roasted potato chips and greens. Head end tomorrow.
November 3, 2016
Up early for a big day. Dropped my car to the mechanic for service and headed into the city in John’s for blood tests before the doc visit. On the way we got a call to say that our 12.45 appointment had been rescheduled for 3pm. Dang, we were hoping to be home mid-afternoon. Anyway we got the bloods done and then had a talk with the social worker Veronica re his family problems and the effect they may have on his recovery.
Went to lunch at a nearby Thai place with lunch specials, my choice because I so felt like a salad, but mine was so hot and bitter with an unknown herb or spice that I only ate a bit of it. Some authentic Thai ingredient I had never come across I suspect, but it forced us into Messina next door for an icecream to kill the taste .
Went to Kinghorn at 2pm to read until our allotted time, which was nearly 3.30 in fact. Nada was much warmer and forthcoming with things we hadn’t even asked her. After asking John about his chemo side effects, she headed straight into future planning. She has had some of John’s 13 year old stem cells thawed and they are fine and usable, though their use-by is 3 years past. She told us that she will do a PET scan just before the third chemo to see if it is working, but she is sure it is, based on his lymph gland size reduction.
Nada explained that she is working on extending his life, not on a cure. The plan is either: 3 cycles of salvage chemo followed by a stem cell transplant or just 6 cycles of the same chemo. She said that at the case conference some other doctors argued against her offering a SCT because of his age and condition, but she fought to give him that option if he wanted to go that way. However she warned that there was a 5% chance he would never get out of hospital, and that the treatment would be very severe and put him in isolation in hospital for a month. His chances of a cure of the DLBCL would be 50% but the FL is incurable. Her facial expressions pretty much told us she was counselling against that option. She said if he chooses the 6 cycles, the disease would come back eventually, she has no idea when, and then she would enrol him in a clinical trial or palliative chemo. Anyway we have plenty of time to consider those options, right now we are preparing for the next chemo round on Tuesday. More blood tests on Monday, his red cell count is down from 140 to 100, but still ok she says, that is what is causing the breathlessness which we weren’t sure whether to attribute to chemo or to atrial fibrillation. Good to know.
All in all, a successful visit with a great deal to think about. Glad Nada is on our team.
November 4, 2016
We were both zonked last night so we had an early one, as much emotional as physical I suspect.
Got a call from Davina to say Millie is sick with viral gastroenteritis, so Davina has been up all night with her. Now she needs feeding on gastrolyte, just 10 mls at a time to keep it down, no food, poor little tot.
Steve and Deborah and Chris and Bernadette were coming from Newcastle for the day today, but sadly D and C had to defer due to a sore throat, threatening a possible cold. Had a lovely day with B and C, relaxed and easy, with an unexpected pop in from Sue and Robert to boot. The house is so full of flowers and looks a treat, good for the spirit.
November 5, 2016
Davina rang to say she too now has the gastric virus, so Louis is literally the last man standing. Let’s hope he manages to come through unscathed as Millie is still below par.
Off to Ryan’s birthday garden party today in Blackheath. Earlier in the week John rang Dan and said we would be driving through Katoomba today and hoped to visit briefly. He was told they would ring back to let us know if it was ok, but no call came, so we drove straight through. John’s disappointment was palpable on the journey up and back.
Ryan and Terry’s house is so beautiful, the garden is a dream, rhododendrons, azaleas, a classic mountains garden. The décor is perfect, I could move in and not change a thing. The two Burmese cats lounging artistically completed the picture. From Pineapple Mimosa cocktails on arrival to the chocolate birthday cake at the end, it was a lovely party. With a long table set up in the garden, the surrounds were perfect for this time of year.
John went well today, but has called a ‘dies non’ for tomorrow to rest and prepare himself for the chemo week ahead.
November 6, 2016
Dav rang to say she is over the virus and then this afternoon Millie came down with it again. I am as good as useless to them as I can’t risk bringing it home to John.
He asked me today if I realised that he would get gradually worse and therefore I would be more housebound, with more of the work to do. He is able at the moment to put a load of washing on or to empty the dishwasher or iron. Let’s just take it a day at a time, I said, we can’t know what we are looking at, so why speculate and make ourselves miserable?
Many people have offered prayers for his recovery and he accepts them gladly in the spirit they are meant. I can see how religion, or faith, would be handy right now. Putting this burden onto another set of shoulders sounds a relief, but it is like the placebo in medicine, to make it work you actually have to believe in it, and that isn’t happening and won’t in my view. Neither of us fancies eternal life somehow, this is all there is and we are content.
November 7, 2016
John went to Castle Hill first thing to get blood tests done to make sure he is fit to have chemo tomorrow. Davina rang to ask if she should go back to the doctor with Millie, but the doc rang her later in the day, so she didn’t need a face to face consultation after all.
Jane came for a casual lunch and told John that Genevieve had contacted her to say she is not to coming to see John at Kinghorn this week as she had planned previously. He has a telephone hook-up tomorrow morning during chemo, he will be part of a meeting of the Tenants Advisory Group for Link Housing. He has his earphones at the ready.
Later in the day the hospital rang, we are good to go for tomorrow. Went to John’s for the night as we need to be there early until late tomorrow and it makes for less driving. I minded Karina, the 7 year old from next door for an hour and a half. She came in her ballet outfit, bearing a guinea pig named Millstead. She is a very bright and verbal child. When she was weed on by her pet she said “I feel something very moist and warm in my lap, I wonder if it could be Millstead” I am predicting big things of this little lady.
November 8, 2016
The biggest chemo day so far! Hooked up all day, arrived 8.40 and left 5.20. One of the first in and by far the last to leave. However he had no immediate side effects (they come a week later, we’ve discovered) and he was a happy chappy as he had a conference call with the Link Housing team on strategy and later a visit from his Canberra friend Rodney.
I think I’ve sorted the question of why he can’t have the preferred treatment, R-EPOCH chemo. It is because there are maximum lifetime doses of two of its components, doxorubicin and vincristine, which I think John has reached in previous treatments with R-CHOP, last used on him in 2003.
So he is on R-DHAC, which includes the drug carboplatin, the centre of the recent furore over ‘underdosing’ at St Vincents. Dr Greigl was giving his patients a flat 100mg dose, rather than a weight related dose, in the belief that the lower dose was equally effective, but with less side effects. John was on 170g today by comparison. Interestingly Dr Greigl was John Hunter’s oncologist at St V’s last year. It is concerning that those questioning him at the Parliamentary Inquiry wouldn’t know what dose to give to cure nits, never mind cancer, so I feel for the guy trying to explain his medical choices to politicians. Gut feeling after watching some of his testimony? Genuine belief in his treatment. Was he right or wrong? Who knows.
November 9, 2016
So, is there prize for successfully predicting Brexit and Trump? If so please forward it to my address.
We spent the day at Kinghorn, John being poisoned with chemo while we watched the world being poisoned by Trumpism. His vice-pres is even worse, he actually believes in the religious, hard right, socially conservative, anti-gay agenda he espouses. The whole Western world is reminding me of the history of Germany in the 1930s.
Well chemo number two is sorted, next step is the PET/CAT scans in a couple of weeks and then Hamad’s appointment to discuss the results. We have booked to go to Kiama in early December for 5 days, it will be great to get back down there even though it will be at the lowest point of the cycle for John. Too many appointments and tests in the first and third weeks each time, so the mid week is the only one feasible.
November 10, 2016
I had the same dream again last night that I had forgotten to give John an important drug and woke with the horrors. No wonder, when there are umpteen tablets every day, antibiotics twice a day on just Monday and Thursday, eye drops 4 times a day, an injection I need to give him at a certain precise time during chemo week, an anti-nausea drug which we need to take with us to the hospital to go into the drip, as well as the ‘in case’ drugs for pain and for nausea. Organisation was never my strongest suit.
I have been doing some research on the stem cell transplant option, so far it seems that the PFS or progression free survival is extended, but the OS or overall survival is not in the three studies I’ve read. A lot of pain for an incomplete gain. But it is up to John to decide, I can only help by digging up the papers. We will talk to Bob as well, but I think I can predict his response.
November 11, 2016
I was in Woolworths at 11am, looking in the Asian aisle for fish sauce in case that is relevant, when they read The Ode over the loudspeaker. I don’t think I’ve ever heard that done in a shop before, but of course I would always have been at work at that time, so perhaps they did.
I got another letter from GIO Workers Compensation, this time a final notice threatening legal action if I don’t pay for my policy for 2017 covering non-existent workers in a shop that has closed. I have phoned them numerous times, written a letter to them and also posted back cancellation forms which they sent me, what more can I do? It is things like this which bring me to tears, a proxy for what is happening to John I know, but it is just more than I can cope with.
Sue and Robert came for lunch and we had a good chat, solving the problems of the world (or more correctly agreeing that we can’t, so we might as well enjoy our little lives as much as possible).
John has set up his computer and new printer here and is right now searching for a leather worker to make him a new shoulder bag to his specifications. He is contributing to the economy bigtime lately. But he also cancelled his ticket buying in the Boystown Lottery, something we have done together for eight years now, getting great enjoyment out of visiting the prize houses and deciding on where we would put the furniture and hang our pictures. He decided yesterday that he no longer wants to win a house as he can’t bear the thought of packing up and moving, so that is the end of an era.
November 12, 2017
Millie is officially crawling as of today, hurrah! She has good genes that girl, walking next.
Went to see Hell or High Water at an early session today. I would give it 5 stars, gripping from start to finish, though it didn’t inspire us to want to go to West Texas any time soon, if there is truth in its depiction. Then went on to the library at Castle Hill and managed 6 books, just like that! Libraries are like that, diamond days or rust days, then when I got home there were 2 emails from Windsor Library to say my inter-library loans had arrived. Better get pedalling on those I got today, there are two Cormac McCarthys in there, must be the influence of the cowboys, dust and plains of the movie.
John is busy writing on his newly refurbed computer, he is into his bucket list with a vengeance. I just call him for meals and medications this last couple of days.
November 13, 2016
Spent the morning assembling papers for my Centrelink visit this week. Note to self: look out the oldest shoes and clothes With my closing down sale I have earned too much in two months to get a full pension till July 2017. The limit is $82 per week over the year. Note to self: look out mince recipes.
John is still pootering away today and using his fandangle printer, sending letters off to a few people. He needed a sleep at 10 am after getting up at 6. His left leg and ankle are quite swollen and the right one swollen a bit, so the heart is struggling a bit maybe. His haemoglobin is low from the chemo, it had dropped by a third at last count.
I feel virtuous because I weeded between the daisy bushes along the drive and then pruned them. I love gardens but I loathe gardening, can’t get it over quickly enough.
November 14, 2016
What a day of contrasts. Paul, who installs and fixes roller doors, came to our rescue as we hadn’t been able to open the motorised garage roller door in over a week and someone had pressed the button lock on the single door from the inside. He carefully removed the glass louvres of the window, climbed in and turned the door to manual, then changed it back to motor operation and hey presto! it fixed itself. What’s more, he refused payment, despite some insistence from me. A-C-M Doors is his company and he has always been one of the best and most personable tradesmen I’ve used, an old Windsor contact.
Then went to North Sydney to deliver the very last piece of furniture from the shop, a traymobile, which had been imprisoned in said garage. It had been on layby for a few months while the buyer was in rehab after an operation. We had morning tea with her and enjoyed her company.
This afternoon we went to see Dr Bob, who checked out John’s swollen ankles and said it was ‘to be expected’. I mentioned he had had to stop, puffed out, walking up Bob’s gradual ramp, and he wasn’t surprised by that either. So, all in order. Bob told a story about a patient in a long troubled marriage to whom he gave a serious cancer diagnosis and the patient went home to tell his wife that he wanted a divorce. He said ‘I can’t fight cancer and my wife as well’. Bob made the comment that John needs to direct all his energy towards his recovery. Providential story? So it later appeared.
John was happily working away on his bucket list projects tonight when an email arrived from his elder daughter, cutting off all contact, permanently. His newly found calm prevailed and he said in many ways he was relieved to end this gruelling soap opera.
November 15, 2016
Had an appointment with a Centrelink officer this morning and he was a gem. Funny, empathetic, full of advice, a real public servant rather than a government servant. It restored my faith in human nature after last night. He said whatever pension I end up getting now will reduce by $80 from January 1, due to the new pension rules. Gotta love those Liberals. Remember when Gough got in and instructed that all face to face public servants remember they are there to serve the public? Well this guy was one of them.
Phil has come over this arv to help John learn how to use his new computer/printer set-up. We are lucky to have so many good friends. Their talk of Documents vs My Documents and missing files was doing my head in, so I picked up a recipe book and looked for something I hadn’t made. Came up with Spiced Crème Brulee with ginger, cinnamon, cloves, nutmeg and cardamom, they are now in the oven and I am free of 5 frozen egg yolks, left over at some point from a pav. Only about 10 egg yolks to go, I make a few pavs.
November 16, 2016
An approach came yesterday from an interested party in John’s family wanting to try to open up discussions in ‘the rift’. John, rather than being buoyed by the intervention, was agitated and cranky at the thought of yet more dissension on the horizon. I was too flat to write of it last night for the same reason. Each good day now seems to end with this topic and it fells us, sapping all the energy built up from the other excellent things that happen.
Some good news yesterday was seeing my old mechanic Mark, who used to service my car at Windsor for over 20 years. He has been ill with pancreatic cancer and told me that he had been searching for two weeks for a part for his toilet cistern, fixing it was no problem for a mechanic, but the part eluded him. He said he was sitting on his back verandah the night before and he thought ‘why am I wasting two weeks thinking about a toilet part when my life is threatened?’ He immediately rang a plumber and offloaded the problem, but when he told the story I thought that there is a lesson in it for us.
Today I took the car up to Windsor again and Mark fitted four new tyres, which were valued at about the same as the car in total, $400 for the tyres as against Centrelink’s valuation of $500 for the car. But it goes forward and back and turns left and right so what more can you expect a car to do? I am not car proud at all, don’t lust after a fancy one.
Went up to Bob Elliott again this arv to get some forms filled out re John’s illness. He made the point once again that he must ‘fight the illness, nothing else’. Was pooped after a big day and made a pretty ordinary soup followed by one of last night’s excellent crème brulee. I could have eaten two, but I was virtuous.
November 17, 2016
John’s mouth ulcers have come back, one week exactly from the chemo, as the literature predicts. They must have calendars, the little blighters. He is so breathless that if his mobile rings in the man bag, he is wrecked by the time he gets it out! I just walked to the mailbox, a mere few hundred yards and asked if he wanted to come, but no, way too far.
Michelle came unexpectedly today, just as I was about to take some raspberry and brown sugar muffins out of the oven, she smelled them on the wind from Pitt Town I think.
Finally got around to changing the shop Facebook page to read ‘permanently closed’, sniff. I also put a few of the remaining restoration products on there at cost, just to clear them.
Tonight another light globe blew and set the safety switch off, plunging us into darkness, but it was simply fixed by taking out the globe and resetting the switch. Globes used to fizzle out, but now they often go bang, why is it so? In an unrelated move, I called Adam the electrician and arranged for him to put downlights in the loungeroom ceiling. We thought two ceiling lights and two wall lights would be enough when it was built, but I read so much at night that I am often struggling and need to be sitting right under a lamp, this way I will be able to read anywhere. He will come next week hopefully.
Read Ian McEwen’s 1981 novel The Comfort of Strangers and am still puzzling over it. Enjoyed the read but lots of questions to put to the author if I had the chance. Like, what did it mean? More thinking required, which is a good sign.
November 18, 2016
Had a pretty leisurely day. I did some food shopping and banking, while John puzzled out a message he was keen to send.
Cooked a pav for lunch tomorrow, an unusual recipe with quite a bit of balsamic vinegar in the meringue, to be served with raspberry cream and strawberries. The only thing is that whenever I mess with a plain strawberry and passionfruit one, I always decide original is best. Now I have six more egg yolks to use up….
John was in pain with his back last night but it seems to have gone now, sometimes jaw, sometimes back or hip, these pains come and go without explanation. Nerve compression?
November 19, 2016
Had toyed with going to a Rationalists Society meeting tonight but then friends from Callala Beach were coming to town so we arranged to have them over for lunch today. Sadly, David woke up with a cold so that was the end of the visit. I decided then to go out to Windsor to pick up the switches I had ordered for the electrician’s visit next week, it needed to be a brass one to match the rest. By then we had gone off the idea of the meeting, it was always a bit iffy, wondering if we could sit away from other folks.
I had made a Balsamic Vinegar Pavlova with Raspberry Cream and Strawberries, which we just hoed into for dessert tonight, it was different for sure, but better than the usual? I’m not so sure. The Salade Nicoise preceding it was very good, though the fishmonger was out of tuna, so I did it with smoked trout, more of a Salade Coomoise as it was Snowy Mountains trout. Now artificially coloured high antibiotic salmon is off the menu here, I am reacquainting us with trout and hardly missing the salmon at all.
John had a good day and is looking forward to Simon’s fifty-tenth birthday tomorrow.
November 20, 2016
Made Simon a big batch of rum balls for his birthday, packed in an old Arnotts tin left over from the shop. I don’t like cocoa and John doesn’t like coconut so we couldn’t do a proper taste test, both turning our noses up at a tiny taste, just hoping they are ok for him though.
The party was great, in a large shelter shed at Bobbin Head, perfect weather for it too. Great food, nibblies, a BBQ, chicken, also cooked prawns, wonderful salads and lots more. But the best part was the warm familiarity of the family towards one another, just the way such a celebration should be. Touching speeches by Simon and all his siblings, at least the bits I heard, due to the usual problem of separating competing sounds. Those wretched hearing aids seem to be creeping up on me, but I am still dug in. Loved meeting his new squeeze Christine, along with her mature and personable children, one conversation with her and I told him she was a keeper. The cake was a-maz-ing.
John was in fine form and well able to handle the day, he is travelling well these last few days. Perhaps his physical health is mirroring his mental state, his new zest for life.
November 21, 2016
I had one of those nights where I spent much time awake going over problems: John’s health, getting the downlights put in the right place, more John’s health, the PET scan and doc’s appointment on Wednesday, Trump, John’s health again. Nothing I can do anything about, but in the middle of the night it feels as if I should be doing something.
We have loaded up the car with some oddments from the shop for auction, lamps, a painting, antique and art books, a whatnot, a pair of Chinese vases, a lifebuoy etc. A lot still to go but nothing of any high value, so this is a start and the auctions close for Xmas soon.
Still puzzling over whether I should go to book group’s 10th anniversary meeting on Friday night. No more people than Simon’s party, but in a room rather than outside, and we would be sitting in close quarters. I really, really want to go, but would feel rotten if I got sick and John had to go home to fend for himself, something he couldn’t do easily, or not at all in chemo week which is the week following. I need a crystal ball. Nothing’s simple any more. Reminder: stop bitching, he is here and well, be thankful, just be happy.
November 22, 2016
Went in to Erko to look after Millie for a while today, which went really well, except when I got up to get a Chux to wipe her tray half way into the meal of custard and stewed apple. The Look! Is that all I’m getting, for lunch, you must be joking! But she soon relaxed when I came back and began shovelling her food in again. Had lunch with Dav, roasted cauliflower salad yum, before heading home to John’s where we will spend the night.
Got a text from St Vincents to say our PET scan appointment has been moved from 7.30 am to 10.45, you can get lucky sometimes, a leisurely morning, hurrah. Also I’ve had an email to say that the book group celebration on Friday night is being held outdoors, that eases my mind no end. Looking forward to it with a great bunch of friends.
John spent the day designing his new manbag, with measurements for each individual pocket, inside and out, depending on its contents ie wallet, pill container, phone, charger, glasses, pens etc. He is having fun with it, drafting it up on his drawing board.
November 23, 2016
Went in to the Kinghorn Centre for John’s blood tests, which was fine till his arm sprung a leak on our way up Victoria Street for the scans. Had to go back, blood-stained, to the centre where they staunched the flow and cleaned up his shirt to boot. The PET and CAT scans took the usual two hours plus in the windowless basement and my feet drew me back, almost without thinking, to the Kinghorn Centre to pass that time reading. Though St Vincents is relatively new, it has no appeal architecturally, whereas Kinghorn is both beautiful and welcoming, quite a feat for a cancer centre. It wraps itself around me and I feel relaxed within its polished wooden floors, soaring ceilings, glass walls and exposed timbers and steel beams. The little hanging Jesuses everywhere, minus crosses, look very odd, like miniature flying creatures, but they are a minor lapse in a delightful building.
Our 4pm appointment with Nada brought real surprises and had her very bouyant! Number one was that the chemo has been ‘extraordinarily effective’ with most of the cancer disappeared and the rest significantly reduced. The second was that now the stem cell transplant is back in play as an option. Their policy is not to do it with people over 70 and she had warned of its dangers, including a 5% chance of it killing him. But now she says that the dramatic result of the chemo increases its chances of success but doesnt decrease its risks of course. If we stick with the six chemo option, it will definitely come back, probably within a year. If he has the SCT she estimates he could get 7-10 years, but she stressed there are no stats for someone his age. What a decision!
We were pretty surprised, shocked even, by this turn of events. She now wants to confer with her colleagues who had previously said she shouldn’t even tell him it was an option and also ask his heart specialist if she has any objections. We go back in December to make a decision after the next chemo. I asked what she would recommend if he were her father. That took her back and she thought for a long moment ‘It’s hard’ she said ‘but I think I would tell him to go for it.’
November 24, 2016
A big day today, Centrelink at 8am to be among the first in the queue and the electricians coming at 7am to do the downlights. All going well till I checked the mail box and (heart sinks) a letter from a debt recovery company set on me by GIO to recover the 2017 Workers Comp for a business that is closed and has no employees. So far I have cancelled the policy by phone, by letter and by the sending via post of their cancellation documents and also via a complaint on their Facebook page which resulted in a message that ‘we will attend to it first thing Monday’. Interspersed with this were numerous calls from their finance dept, during which I explained my circumstances ad nauseum.
So, I rang the debt company in Melbourne and explained again. She looked into it and said GIO claim I haven’t cancelled, but offered to handle it if I sent new cancellations forms to her by email. May I say here that GIO went down the sewer when they were bought out by Suncorp, even the sight of a Suncorp sign now raises my hackles. Next step is my going to the GIO city office and throwing a very public tantrum, I can’t wait.
Centrelink went well, though I was eighth in line at 8am, I was seen before 9. I think it is all sorted now, I am officially a leaner, bludging on hard working tax-paying Australians. My concerns about the electricians cutting my loungeroom ceiling in all the wrong places were of course unwarranted, they did a great job as always. Why do I let myself worry so much about things? John pointed out that his two closest friends, myself and Terry, are both inveterate worriers and agonisers over small details. John himself is a quick decider, which brings me to the biggest worry of all.
I don’t want to influence John at all in his decision on chemo versus stem cell transplant, but we come to it with very different personalities. I am not a gambler, safe and steady is always best for me. He on the other hand is quick to decide and happy to take risks. So while the thought of an STC is terrifying to me, he approaches it as a new chance at life, as well it may be. He is also capable of compartmentalising, which I can’t do, so he can say ‘we will think about that when we next see Nada’, while the decision eats me up while chopping a carrot or emptying the garbage. However I must stay silent and let him do all of the decision making, it is his life after all, not mine. All of this finally got on top of me and I ended up unwell and headed to bed at 9pm. Tomorrow I will be stronger.
November 25, 2016
And today, I am stronger. Went to do some minor banking and the teller introduced me to the financial planner……..aaahhh, my worst nightmare, a financial planner. He was a lovely young Indian born man, who is probably super at what he does, but my eyes just glaze over with all this stuff. Do I have a budget? No. What do I pay per year on utilities? Um. Do I know what an annuity is? Not really. Now he will ring me back next week to discuss what he suggested. Bad move Maureen, perhaps I could change my mobile number………he is so sweet though……….and Indian…………. or should I do what he says?
Was happy to be able to go to our book group’s 10th anniversary cum Christmas dinner at Carol and Jack’s house. Sonia handed out certificates to all members accompanied for each of us by a Mexican painting, done on mulberry bark, bought on her recent trip. We had a bounteous feast of roast turkey with lots of sides and made merry to celebrate our friendships. It really is a special group, with common values though different lives.
November 26, 2016
Had a meeting at Gosford with Kim, the president of the Leather Workers Guild, whom John has asked to make his manbag. He is a retired pharmaceutical chemist who has been doing this work for 55 years. He showed us samples including a beautiful bag which won at the Royal Easter Show this year. His work is all hand done, including the stitching! I’m sure John’s bag will be something to enjoy every day. Price was not discussed…………
On to Robert’s 70th birthday party at Killcare overlooking stunning Maitland Bay, but as we were a bit early we sat by Killcare Beach for a while, surprisingly it was not at all crowded on such a beautiful day, but I guess the locals are spoilt for beaches. The house is looking a treat with views to die for and a wandering waitress plied us with delicious food all day. He chose people to invite from his uni days, through agriculture and medicine, from hospitals where he has worked, through to neighbours and friends, but doctors were very thick on the ground, a good party at which to have a heart attack I was thinking. It was only a few years ago that I realised that the Robert who was an ag student and left to do medicine, when I was a technical officer in Agriculture at Sydney University in the 1970s, was the same Robert I had come to know in recent years. Life’s funny coincidences.
November 27, 2016
Had a down home day after a few busy ones. My new gardener John came and made a start on finding the water and gas pipes so they aren’t broken by digging. He is methodical and careful by nature, just what I need. He just appears when it suits him, as agreed.
Meanwhile I got the Christmas cake made, the same cake I did for John Hunter’s 70th and JMM’s 75th. I found a leftover egg on the cupboard after it went into the oven, oops, but it doesn’t appear to have spoiled the cake. We shall see I guess. Made vanilla icecream as John has admitted that he likes it best, over all my myriad flavours of late. Perhaps I need to have a vanilla and a flavoured one in the freezer all the time. He’ll love that.
I have been thinking about the bank’s financial advisor ringing me for an answer, so I asked an expert friend who confirmed my gut feeling that perhaps I was being sold a pup. My intuition was once again leading me in the right direction. Sorry sweet Indian man. Is positive discrimination a sin I wonder? I wonder sometimes if I will ever see India again.
November 28, 2016
Went up to Windsor briefly and ran into a woman whom I first met 20 or more years ago when I went to her house to buy some small pieces of furniture. She needed to clear the floors as all three of her small children were in wheelchairs due to a genetic disability. She had been told by doctors after the first and the second that it was a fluke, not genetic at all, but they accepted it was genetic after the third. Anyway, I spoke at that time to Windsor Lions Club about getting a chair lifting device for the stairs and they funded it very soon afterwards, since then she has popped into the shop periodically to say hello. Today she was with a small child perhaps 10 months old and I asked about him. It emerged that her disabled daughter had become pregnant with twins, but the pressure under her diaphragm was making it impossible to breathe normally, so it meant they had to abort one twin, this in a Maltese Catholic family. Finally a son was born but the young mother died from an infection 10 hours later, leaving her mother to bring up the baby. So this beautiful smiling soul who had never, in over 20 years of my knowing her, complained of the unfairness of her lot, is hit with the death of a disabled daughter and the lifelong care of her baby. The woman is a saint and such an inspiration to me each time we meet. She was very concerned about John’s health and will pray for him. Acceptance I can only dream about.
November 29, 2016
Stayed at Lane Cove last night for an 8.30 start this morning at Kinghorn. We had a good run and were there at 7.45. Nada had rung yesterday to ask if John were willing to change cardiologists to one at St Vincents, we can only assume this is because she is thinking he would need one there for the possible stem cell transplant, as she was fine dealing with Gemma Figtree at RNSH in the past. While John was hooked up, I wandered off and found Assoc. Prof. Cameron Holloway’s office in Oxford St and they had a cancellation for this Thursday afternoon at 4.30. Of course this was the day I was supposed to be at Gosford to see Assoc. Prof. Glenn Reeves, my immunologist, for my regular six monthly visit. So it was a showdown at high noon of the Assoc. Profs and John’s won the fight. I rang Gosford and grovelled over the late cancellation but they were fine and wished John well.
There is always a lady at chemo, about my age, with the most beautiful clothes you could imagine. I make a point of checking her now. She is a walking lesson on how well good clothes can make you look, but being as slim as a biscuit doesn’t hurt her look at all. From earrings to shoe heels she is the epitome of style, but I am not sure she would like to be told, she comes across as a bit of an ice maiden, never making eye contact. I dips me lid.
November 30, 2016
Got a good start today, we are learning that if you get to the chemo appointment early you generally go in early, so we finished by mid afternoon. One slightly worrying note, the nurse asked John if he had the script for the 10 steroid tablets he needs to take on each of the next two mornings. The what? Since when? we asked. You should have had them each cycle was the reply. So either there has been a stuffup for the past two cycles or else it is a new regimen that Nada has added, we shall see. The pharmacist was a bit taken aback by the dose it seemed to me.
I wandered off in the afternoon to the Jewish Museum, which is just on the next corner to Kinghorn. What do you want, I was asked. Um, to see the exhibits I said. I was then told that the museum is undergoing a big renovation but I could come in to see the only two accessible displays on Anne Frank and on Letters from the Camps but would not be charged. I was the only one there till about 6 senior schoolgirls and a teacher arrived for a pre-arranged talk. The teacher approached me and asked if I wanted to join them which I was happy to do.
The talk was by Kuba Enoch, a holocaust surviver who was in Auschwitz, Birkenau and other camps as a child. Only he and his father survived, though they were separated and then reunited well after the war, he lost his mother, brother, aunt and uncle in the camps. I sat on the floor for an hour listening to his story and was able to ask a few questions at the end. It was a very humbling experience. In answer to one of my questions about anti-semitism in pre-war Poland, he likened the level to the same phenomenon in parts of Europe today, very worrying but not too dangerous. Let’s hope that situation doesn’t deteriorate further there, but I see the 1930s repeating themselves on a number of fronts. I do seem to be crossing paths with some inspiring people lately and it certainly puts other problems into perspective.
Got a call from an old friend tonight who has just had a cancer diagnosis and is going for surgery next week. It set me back on my heels a bit, he is as fit as a flea.
December 1, 2016
What a day! Went to Potts Point on the way to John’s appointment with the cardiologist. Had a look around an antique centre there and it all seems like another world already. Had a lovely lunch at Zinc, 8 hour lamb warm salad for sir and a chili prawn pasta for moi, with a mineral water and a chai it came to $31.50! We will return, lovely food, crazily cheap.
Toddled along to Oxford St to try on a dress I had seen in a window there, it was beautiful for someone else’s shape but not mine sadly. Also in Oxford St was the Prof. at Sydney Cardiology and what a sweetie he turned out to be. He put John through a walking test and said that Nada wanted him to check if John’s heart is up to a stem cell tranplant. He didn’t do very well in the test (surprise) and the Prof thinks that the result isn’t explainable by just low haemoglobin and his previous heart issues. “There is something else going on”. So tomorrow he is booked in for a cardiac CT scan and a Doppler scan on his swollen left leg. Normally at this time of year it would be hard to get an appointment but his nibs wants results asap, so we are going to a brand new cardiac testing practice at Barangaroo, because it just opened and they don’t have any patients, yet have state of the art equipment. Our afternoon tea guests for tomorrow have been cancelled yet again.
December 2, 2016
I am writing this in a funk.
Went to Barangaroo for John’s cardiac CT and leg Doppler in swish new rooms only just opened in one of the three new International Towers there. His heart rate was too fast despite taking extra beta-blocker to slow it down for the test. So they had to give him another dose and wait for half an hour, but it was very hot outside so it was good to wait in the cool and beautiful environment of their rooms with a view of a slice of Darling Harbour. Good architecture makes waiting so much easier.
It all went to plan and we eagerly await the results. His arm sprung a leak as usual, but luckily we had waited for just such an occurrence so he went back in for a tourniquet to be put on to stem the flow. Had a shared meal about 3.30pm as he couldn’t eat for about 4 hours prior to the test. The less said about the meal the better, a much hyped new place that turned out to be just another tourist trap. Trip Advisor however published my very negative review as they did my very positive one for Zinc the day before.
Got home at 5pm to find that my new computer lead had been delivered while I’ve been staying at John’s and now we have to go to the courier’s premises to get it tomorrow. More importantly, I got a letter from Centrelink to say that they haven’t received an original document I posted on December 17th in their official return envelope and I must send it (not a copy) by December 9th, next Friday. However the person who wrote the document has gone on leave today and won’t be back till January so it can’t be redone! I missed him and the Centrelink office by half an hour. Now I must stew till Monday to see what to do.
So, I am in a funk as I don’t know how I will get round this bureaucratic mess.
December 3, 2016
I lied, I was more than in a funk, I was feeling gutted, and woke up the same way. So the only option was to be at the door of the medical centre when it opened to see if I could get a brand new report done. In luck, a doctor whom I had never seen before agreed to write an original report from the medical records, hallelujah. Bless, bless, bless.
Now I can be on Centrelink’s doorstep on Monday morning to deposit it by hand, then we can get away on time hopefully. The doc commented that she would scan the new report as she has had multiple incidents where medical reports ‘go missing’ at Centrelink. Ninety- year-old Brian rang upset to tell me he had had a phone call from Centrelink asking among other things if he still drove a 1996 Ford. It was not the car he owned years ago when he went on the pension, so they had been looking at his rego information. They then sent him a form asking him to list his assets and said if it is not returned by a December date he will lose his pension. Gladys Berejiklian blithely admits to wasting mega-millions on mistakes in the light rail project, but a pensioner gets hassled about meagre assets. Liberal values.
Dav, Louis and Millie arrived mid afternoon ahead of going to a wedding cocktail party in the evening. No problems with Millie, she was a happy sausage, but I must admit going in a few times to check if she was breathing. She was, phew. They all stayed overnight.
John is still a problem, his pulse varied for no apparent reason today from 110 down to 34, yes 34, which is way low and getting into passing out territory. He has been dizzy on and off all day. It just doesn’t stick around normal at the moment, either too high or too low. A medical degree would be handy, but a quick diploma with a promise to only ever treat one patient would be a comfort. I wonder if Sydney Uni would think about letting me do that?
December 4, 2016
Unusually we all sat down for a hot breakfast together, Millie had porridge and blackberries followed by orange segments for afters, while the big people were more traditional with Carol’s eggs and various accompaniments. Davina scored the chocolate brown one which probably tasted the same, but looked splendiferous. Perhaps that one was a ring-in from the Breen’s fancy chooks, I can’t remember now.
A good restful day with laundry and other pre-holiday tasks thrown in. I decided finally on what I would like for my pooled family Christmas gift, a training course for the First Aid Certificate. Eight hours home study followed by 8 hours hands-on training, covering fractures, bleeding, burns, snake bites, choking, CPR etc etc. I shall sit at busy intersections awaiting practice. If it covers pulses of 34 I am home and hosed.
December 5, 2016
I was at Centrelink 45 minutes before opening time and was first in the queue. The elderly man who was second had a recently broken leg and was on crutches, was there anywhere for him to sit? No, of course there wasn’t, so I told him to sit in his car and I would guard his second spot. It is pathetic, they have this queue every morning and if it is wet there is no shelter either. Once I finish my dealings with them I will take it up.
I was served by the lovely Neil who told me the medical report had been put into the file in Canberra the day they sent me the threatening letter about not having sent it, more than ten days after postage. Had I not been ready to leave for Kiama, I may have screamed or banged my head on his desk, but as it was I thanked him and said ‘well you may as well have this second one I’ve brought with me’ and he said that too much evidence is better than not enough. Smile from moi. I should send them the doctor’s bill.
I drove to the big K as John is still out of sorts. Some small let-downs were gotten out of the way on day one. Firstly our favourite bakery closes Mondays so we are breadless and won’t buy second rate stuff when theirs is so good that we take it home to freeze. Secondly our favourite Devonshire tea spot, manned by an old couple who made the best scones anywhere, has changed hands but we didn’t know that till we had ordered and tried their now very average scones, thirdly the wi-fi is broken at our accommodation so the podcasts I was looking forward to listening to are out the window and I am forced to use the library computers for anything I want to do. Luckily for me the library is pleasant, handy and free.
Now we have our three minor disappointments over with we can look forward to an excellent week. Had a swim in the pool in the very warm and humid afternoon and cooked some gemfish and salad for dinner, the fish sourced from Kiama boats via the fish co-op. Encouraged John to go for a walk after dinner but he could only manage to walk past five cabins on the cliff top before he had to pack it in and walk back. He was in bed exhausted by 9.30. His pulse rate has stabilised but his dizziness and lethargy continues.
December 6, 2016
John wasn’t feeling up to going out today, but I got three good walks in, two just going to the shops for supplies and one along Kendalls Beach and back.
It is interesting that whenever we go on a beach holiday, every single time, the weather pattern is the same. First day, warm and sunny, subsequent days cold or windy or stormy or rainy, last day we pack up in hot beach weather, doesn’t matter if it is three days or a week, the same applies. But this is December right? So the mould will be broken? Nope, hot and muggy pool weather on day one became storms and rain on day two and continues so, all three of my walks yesterday were in light rain. But we look out at the ocean 24/7 which is the best part of being here, in any weather.
Finished reading Here I Am by Jonathan Saffran Foer, what a writer he is. I was in tears when he was describing a character at the vet putting his dog down and I am not even a dog person. His descriptions of the various shades of Judaism and the characteristics of its believers were educational as well as having fictional interest. Then watched an interesting doco on Glenn Murcett last night, what a wonderful architect and such a decent human being. Compare with Harry Siedler……………. It was a revelation right at the beginning of John’s and my relationship to discover that we both loved Bob Dylan, then to find we both hated jazz and abhorred Harry Siedler’s buildings, a trifecta that cemented us together.
December 7, 2016
Took a tootle down the 11 km to Gerringong in the morning and John made it not only down one side of the short main street, but up the other as well, albeit after a rest at the bottom. It was good for him to get out of the cabin for a drive, finishing at the fishermen’s co-op in Kiama where we got some blue grenadier for dinner. I only seem to buy that fish when we are on the south coast, it doesn’t seem to get to the Sydney shops at all.
After lunch we drove down to the beach for the farmer’s market, where we stocked up on fruit and veg, orange blossom honey and had an icecream at the stall of the Kiama mini dairy farm, who produce their own milk to sell, as well as to make their icecream. A scoop of sour cherry and one of honey and cinnamon, delicious. Dinner was blue grenadier with orange sauce made with a touch of chili along with beans and asparagus.
We had agreed to have a week off medical matters but of course John keeps coming back to his decision on Monday on whether to have the stem cell transplant or not. For the first time last night he expressed frustration with his health, saying that whatever decision he makes he will be sick like this for a few more months and I am afraid he is right about that. He was fed up with it and took a sleeping tablet at 9.30pm, probably a good move in the circumstances. I said we will go out again for a short drive tomorrow, he is very stoic in the circumstances and coping with the chemo extremely well apart from the exhaustion.
December 8, 2016
I went for an early swim in the surf just near our cabin, the water was divine. Later we took a drive up to Saddleback Mountain, beautiful views and the road is bordered by dry stone walls all the way, with cows and horses to each side.
I am still somewhat obsessed with what I learned from the book Here I Am, consider the fact the Jewish people are 0.2% of the world’s population, yet have won 22% of Nobel Prizes. The book talks about some religions focussing on inner peace, others on praise or obedience, but Judaism focusses on intelligence. Arguing with the rabbi is a positive, not a negative, action. As a teenager and in my early 20s I was seriously obsessed with reading about Judaism, perhaps the thought of going without prawns put off any chance of a conversion, but I was tempted at one time. It seemed like home for some reason.
John planned a swim or at least a paddle in the afternoon and had a rest prior to the time, but the act of putting on shorts and shoes saw him too exhausted to continue, even if I drove him to the edge of the sand. However, his mood is better than yesterday, aided by phone conversations with Christine, Steve and Terry Quinn from Perth. He is always more positive when he has had some interaction with friends and family. He managed a walk along the cliff front near dark and we happily read after that.
December 9, 2016
Had an early walk from the cabin to the end of Kendall’s Beach in my swimmers, then managed to get a slightly later check-out, 11 am, so we don’t need to rush packing up. I managed to upend John’s water all over the lounge so we needed extra time to get it dry, oops.
We bought a bit of lunch from Flour, Water, Salt, a salad for moi and an organic chicken and leek pie for sir, and sat in the car overlooking the harbour to eat it. John feels up to driving home as it takes no aerobic energy, so I am not arguing. Went first to Shellharbour and then to Killalea State Park nearby. Sat for a while at The Farm beach inside the park, where the waves rolling in looked like a surfing movie, quite different from Kiama. It is quite deep water, with open rolling waves allowing the surfers to ride for two to four hundred metres. When we tried to drive to adjacent Mystics Beach the road was blocked and we discovered they actually were making a surfing movie there, apparently the two beaches are world famous for board riding, as shown by the number of riders at a fairly remote location.
Happily uneventful drive home playing ‘I spy’ when we hit traffic, followed by a call from Halifax from Kenneth who had received his birthday gift from me today, a dictionary of Australian colloquialisms, in Russian, just the sort of quirky book my Russian speaking brother would love, and apparently did. Sang happy birthday even though it’s not till Monday as I said he should celebrate all week.
December 10, 2016
Good day, John has been a bit better, I am putting it down to the holiday. Got some useful chores done, made a sultana madeira cake, got out the Christmas tree, set it up and did the decorations, wrapped a couple of presents for our family Christmas next Wednesday and found the missing stock of stamps I had put away ‘somewhere’, just in time to put them on some cards. Mmm, doesn’t sound much in the retelling, but combined with house chores it ate up the day. Davina and Co will be in Queensland with Louis’s family on Christmas Day so Carly is coming up next week and we are celebrating on the 14th.
Tripadvisor sent an email today to say I am now in the top 2% of their reviewers, with some 42, 972 readers. They have been contacting me regularly since I hit the top 10%. I’d be pretty happy if I had that many readers of a book I’d written, but these are just travel and restaurant or café reviews. Sadly I suspect there is no prize for getting to be reviewer number one, but I love heaping praise on good places and also feel a little less ripped-off when I’ve had a bad experience of inferior food or accommodation if I can help others avoid making the same mistake, but of course tastes vary so it’s not one size fits all.
December 11, 2016
Got the last of Millie’s Christmas gifts today, the others I ordered and picked up in Kiama. Just finished wrapping it when Dav rang to say our family Christmas on Wednesday is off as Millie has a cold and it is too risky for John. Boo hoo, I was looking forward to it. We will try again on Monday 19th, they leave on the 22nd. Dav sent a gorgeous video of Millie saying da-da, but does it count when there is heavy coaching heard in the background from, guess who? Da-da.
Robert and Sue dropped in for a cuppa and a good chat on their way to carols at the retirement village where Sue’s mum lives. It will be sad when they finally move altogether to Killcare, it means there will be no more ‘dropping in’ for no reason, which I think is a lovely part of any relationship. No makeup, whatever is in the cake tin, no pressure, just as we are. Once we happened to be near the house of one of John’s rellies and I said ‘do you want to drop in?’. His reply was ‘it isn’t the sort of relationship where you just drop in’ and I remember thinking that was sad, but we are all different.
Been thinking about John’s exhaustion and breathlessness and wondering if it could be heart damage rather than just low haemoglobin. So I asked my always open friend Dr Google and he said yes it could be and said that different types of chemo can have quite severe down to no effect on the heart. So I looked up the severe ones and surprise, surprise, doxorubicin which John has every three weeks, is listed as the very worst for ‘heart toxicity’. The symptoms (tell your doctor immediately it says) are extreme fatigue, breathlessness, high or fluctuating pulse and swollen ankles. Tick, tick, tick, tick.
We see Nada tomorrow for ‘the big decision’ and we both feel that we would prefer to say ‘neither thanks’ but that isn’t an option. We don’t yet know the cardiologist’s opinion but it may be that he can’t take much more pressure on the heart. We will know tomorrow.
December 12, 2016
So, the big decision day at last! Or not. Half an hour before we were to see Nada, John got a phone call from the cardiologist to say he wasn’t happy with the CT report and that he needs an angiogram to see if some arteries are blocked, as they appear in the scan, which is described as ‘only fair’ in quality. Then 20 minutes later he got another call from RNSH this time telling him he was booked for an angiogram at 11 am tomorrow. They had booked him there with his regular cardiologist as the procedure could be done more quickly than at St Vincents. They don’t muck around with him.
Then we saw Nada who seemed to have gone cool on the stem cell transplant idea. She said she won’t do it unless the cardiologists are sure his heart will take it, which is fair enough. But it worried me a bit that last time she was talking the procedure up, but now she is saying ‘well, maybe you would get 5 years with a SCT, but we can’t be sure’ and talking up staying on chemo instead ‘you might get more than a year with 6 cycles, we just don’t know’. It was like buying a shirt and the sales person says ‘oh the red is just perfect for you’ then discovering it is not available in your size and reverting to ‘oh really I think the blue is better and we have one right here’. I would feel more comfortable if she said ‘John, the red one would have suited you better but we can’t do that, so I think we need to go with the blue’.
I asked Nada if having the fourth chemo next week precludes the SCT (as she had indicated before that he could only have a maximum of 3 in that case) and she said nooo……. fairly unconvincingly. It is booked for the 3rd of January if we go ahead, she said, this was news to us. I feel quite exhausted from all the second guessing. She did say that his haemoglobin is almost low enough to have a transfusion, so to ring her if he got really exhausted and breathless, which was how he was all week in Kiama, but happily is much better now, so I suspect his blood count was even lower last week but has come back up.
We had lunch at Zinc in Potts Point, cheap and beautiful food, before heading home to John’s. He had convinced me to pack a bag this morning ‘just in case’ and luckily I did as we are much closer in Lane Cove to get to RNSH tomorrow. And the beat goes on and the beat goes on…
December 13, 2016
Happily not an early start at North Shore Hospital, but John couldn’t eat or drink since last night. We brought along the blood reports as instructed as Nada said it was important that they knew how low his platelets were. Once he went in I went up to Crows Nest by bus in extreme heat, my feet swelling up and making walking difficult. So it was hardly a pleasant outing, I retreated eventually to the hospital’s air con, just as His Nibs came out of recovery. While out there was a call from Nada’s office booking an appointment with her on January 5, interesting as she had said previously that she had tentatively booked the transplant for Jan. 3, so it is looking as if this isn’t her preference, as we suspected.
The doctor who assisted the angiogram said they found some blockage in the existing stent which they cleared, but they didn’t put in a new one. His arteries weren’t significantly worse than the last angiogram which is surprising considering the chocolate, butter and icecream he puts away. But the interesting finding was that he is in atrial fibrillation most of the time. Our GP once said that eventually he would have constant AF but wouldn’t be conscious of it as it would have become his ‘normal’. Apparently this has happened, as he used to have attacks of low blood pressure and pulse irregularity that would force him to go to bed for an hour or a day, or more, then it would spontaneously disappear, now it is a constant.
We had bleeding dramas again, first the bandage over the vein cannula site sprang a significant leak, which had me rushing for a nurse as the bed turned red. Over the more critical artery site they had put an inflatable plastic band as a tourniquet, which had the air gradually taken out of it with a syringe every 15 minutes. We were told to wait a while after the last deflation and sure enough it began to leak a little. This delayed our departure by a couple of hours after all the other patients had gone, as if that had leaked big time we would have been in real trouble. About 8 pm we got the all clear with instructions to call an ambulance from home in the case of a significant leak. So far, so good though.
I was happy enough when they rang to accept the appointment on John’s behalf to see Nada on January 5 , it gives her time to percolate her views on the transplant option, but John wasn’t pleased with it and wants an earlier appointment now that the cardiac issues are clearer. He doesn’t want to relinquish the Jan. 3 slot for a transplant, and though he hasn’t decided definitely, he is clearly leaning towards going ahead with it. The more time passes the more I am leaning the other way, to me it is just too risky with his heart, but it is not my disease and not my life so I need to shut up. Luckily John never reads the blog so I can express that opinion here pretty safely, but if he does, so be it.
December 14, 2016
So, it turns out Millie’s streaming cold is actually hay fever according to the doc so the opportunity now exists to reschedule the family Christmas from next Monday back to today. I had to shoot out to Baulko to pick up the gifts, John seems ok to be left after yesterday’s procedure. Carly arrives from Canberra today to complete the picture.
John was told not to lift anything with his right arm for a week till the artery heals but while I was away he decided to pack up his blankets for winter and lifted them into the top of the wardrobe with both hands……..and started another bleed. It settled after half an hour’s pressure on the site. It is clearly necessary to observe the rules on this one. Can’t leave him alone for an hour it seems!
We battled through awful traffic to Davina’s, arriving an hour late, and enjoyed a meal of lamb meatballs with a quinoa, roasted cauliflower and nut salad with Moroccan flavours, and a yogurt side dish, all yummy. John made an orange and almond cake to take for dessert and I caramelised some orange slices for the top, a team effort. We exchanged our Xmas gifts and Millie seemed to fare best, I wonder why?
John had an evening call from his daughter to say she and her partner have bought a block of land and inviting him to go up to the Blue Mountains on Saturday to see it. No mention was made of his illness or treatment or the fact that he was barred from all contact exactly a month ago. He is as baffled as I am.
December 15, 2016
I went up to Windsor to visit Brian and go to the library to pick up books I had reserved. Used the opportunity to have sushi which John doesn’t like. I could live on it with the odd rich sweet thrown in.
Spent the day doing little tasks like refilling my Filofax for 2017 and writing in all the dates I copy from year to year. No, I don’t want to do it online, thanks ever so much. My paper records stay where they are supposed to be, never malfunction and feel right for me.
Started reading the book Flight MH370 at night. Seeing there is no resolution to the mystery, the book goes into various plane crashes and near misses and their relevance (or not) to MH370. For someone who hates flying there is nothing better than scaring yourself shitless late at night with detailed plane crash stories and then climbing into a lovely grounded, motionless bed with the realisation that there are no flights booked for me in the foreseeable future. Blissful sleep ensued.
December 16, 2016
Today was the day of Michelle’s ‘meet my UK baby sister’ lunch and I got a call from her first thing asking me to travel in with them. So I drove to North Rocks and we headed in together to Fish and Co at Forest Lodge. Lovely venue in the old tram sheds and good wild caught fish to boot. Enjoyable meal and company.
We had just arrived when I got a call from John to say that Nada Hamad had finally called him, in lieu of the requested appointment. We have both been hanging on her decision about the stem cell transplant, yet her opening was along the lines of ‘you wanted to talk to me?’ Apparently she had discounted the stem cell transplant altogether, in consultation with five other specialists, his heart just won’t take it in their view. Ok, he can accept that, but why oh why, weren’t we told? She was prepared to leave telling us that till January 5 and keep us guessing all that time. Even more annoying, she said she hasn’t even seen the angiogram report yet, she made the decision on the basis of his failing the stress test on December 1 !!! We have seen her since then, on December 12, I just don’t understand her lack of communication, obviously she is unable to put herself in the patient’s shoes. In fact we seem to be dealing with more than one woman at the moment whose thinking pattern is so outside of ‘normal’ that it saps our energy and leaves us exhausted.
John is disappointed, but resigned. I am pleased to have it resolved, but angry as well.
December 17, 2016
Had a bit of a lazy day.
Finished my Flight MH370 book, went to the library again to track the movement of MH370 on a decent atlas (obsessed? not moi), did some food shopping, planned to make a blueberry and almond cake topped with whipped cream and blueberries and then noticed the recipe said ‘best made and eaten on the same day’. Mmmm maybe wait for visitors for that one or we will end up scoffing the lot to keep the book happy. Made nothing.
Still feeling wounded from Nada’s offhand treatment and the cancellation of the SCT without consultation, so I spoilt myself today with sushi for lunch, they had smoked eel, then made garlic prawns for dinner, my comfort food. It helped. John is more resilient.
December 18, 2016
I can be resilient too, it just takes me longer, like an ocean liner that travels straight ahead for quite a distance after the captain has signalled helm hard-a-starboard. So this morning I ended up at a 9.30 am session of the movie The Founder. John wasn’t keen as it was about McDonalds but it was an excellent show retelling the story of how Ray Kroc, an ambitious and avaricious man to say the least, built up the franchise and diddled the original decent McDonald brothers out of their 1.9% annual royalties, negotiated with a handshake with the only witnesses Kroc’s employees. Sad, beautifully acted, 4 stars.
Our Christmas tree is pathetically bare after our family Christmas but I did buy a couple of things this morning for close friends which will make it look purdy again. It is a different Christmas this year for many reasons but we will do our best to make it a good one. Decided today to make a Christmas pudding even at this late stage, at least the cake was made early. Didn’t have any rum left so used whisky, most of my spirits end up in cooking, except the Drambuie of course, that would be a tragedy. Drambuie and milk, mm-mm.
December 19, 2016
Finished the Christmas pud while John went up for his blood tests to prepare for chemo tomorrow. We didnt hear back so assume all is ok. His heart seems a bit better now.
Did some gift wrapping and a bit of housework. John the gardener came late and I gave him a couple of bottles of wine just before we left for John’s place about 7.30pm to sleep there tonight for an early drive to Darlo.
December 20, 2016
Oh Dear! We are in a bit of bother at chemo through no fault of our own. On the third cycle we were given a script for a very high dose of steroids, 10 tablets taken together on two consecutive days after chemo, even the pharmacist made a comment about the size of the dose. This had never been given before so when we saw Nada on Dec. 12, we asked about the ‘new’ tablet regime. She was horrified, ‘what do you mean new?’ she said, ‘that is an imperative part of your chemotherapy mix, you should have had that since day one’. We assured her we had never heard of it till the third cycle. ‘I will look into that’, she said ominously.
Cut to today. As we were about to leave John was asked by a surly nurse if he had the script for the steroid tablets and to read the instructions on it, then to read it again when he picked up the drugs and again when he got home. The nurse made the it clear that she thought he had forgotten to take the tablets for the first two months, even though we hadn’t mentioned anything to her about the mistake. We couldn’t believe it, obviously they had got the rounds of the kitchen from Nada about the error and were trying to put the blame back onto us. ‘They’ve closed ranks!’ said an amazed John after she left and pointed out to me that if he wanted to make a song and dance about it, we could prove from their records that no scripts were issued, but is it worth the grief? I am sure they have convinced Nada that it is just that silly old couple who can’t follow instructions. Grrrrrr.
Apart from that, the day went well. I did a walk from Darlinghurst to Potts Point through Kings Cross, amazed that many people were sitting in bars drinking schooners of beer at 9.30 in the morning. Read the report from the cardiologist that was mailed to John. He kiboshed the stem cell transplant on December 1, the day we saw him, saying John was pale, short of breath, had a heart murmur, tachycardia, decreased contractility of his heart and poor exercise capacity. Apart from that he was fine! He states he would be concerned about the risk of a SCT so Nada really had no choice, as we suspected.
December 21, 2016
Had a good day at chemo, everyone in a Christmas frame of mind, which is great, except now, after 9pm, I just remembered that they didn’t give us the cold pack with the injection kit and I have to give him a vital injection at exactly 3pm tomorrow, so now a trip back to Darlinghurst is required in the morning to collect it. Too many Merry Christmases altogether.
The only other thing out of the ordinary was a prison inmate patient having chemo guarded by two officers with guns, he seemed cheery enough, but one officer was complaining about being bored and having to do crossword puzzles all day. Better than a riot I thought. Good to see the inmate’s medical needs were being so well looked after.
December 22, 2016
Another good day, even though John needed to hare down to Darlinghurst for the overlooked injection pack, the needles are imperative in keeping his white blood cell count high after they have been knocked down by chemo. Luckily, his heart will usually let him drive any distance, but not walk to the corner.
Went up to do the grocery shopping (marzipan to top the Christmas cake was unobtainable in three stores by the way, so I will do my own as I usually do) and we both got back from our respective tasks in time to welcome Jack and Carol for elevenses. Had a lovely chat and now the house smells divine with flowers from their garden. John had calls from Rodney and Michael as well, so he has had a trifecta today.
December 23, 2016
Up and at it for the Christmas meat and fruit and vege shop. You would think we were hosting 20 people for a week, but it is good if we can sit back and have a few days without shopping. Boy you have to read labels, I can’t understand people who don’t. I was looking for bottles of grated horseradish, Harris Farm had two brands. I didn’t care which so I read the labels, first one was a Polish one, Baska Jon brand, 95% horseradish, the second was 5% horseradish and the rest of it was parsnip and fillers. Both were about the same price. Like I said, read the label.
John is a happy chappy today pottering round, he was well enough to do a couple of loads of washing and hang it out which is quite an improvement. He also polished the silver cutlery for Christmas dinner, recipients of said dinner are requested to notice! I have just been doing some bits of cooking that can be done ahead. I think we can accept Christmas arriving on time, we are all set and ready, such a difference to the mad rush of working right up to the day for the last 27 years. I am glad we are not in the crazy present buying rush, just doing the food is much more satisfying.
December 24, 2016
Had a lovely day. Up to the fish shop before 8am expecting to stand in a queue, but I was the only one there at the time. Got the oysters and prawns for tomorrow and back by 8.30. After our last experience of the Sydney Fish Markets I am so glad we are not in the crush there. Carly arrived from Canberra just before noon, we had cheese salads for lunch and around 2pm Jackie and Carl arrived to spend a couple of hours with us on their way from Caves Beach to Campbelltown for their family Christmas. It was great to see Jackie who is having Rigvir virotherapy treatment imported from Latvia for her cancer, it has had extremely good results. It does not work for lymphoma or leukaemia though.
Made a Thai green curry for dinner and we finished off with some of Carol’s Christmas cake, seeing it is Christmas Eve, that is close enough! Will leave some out for Santa (only a small helping, he is fat enough) and a bucket of water for the reindeers, which they always manage to knock over.
Had calls from Chris Geraghty, Deborah from Newcastle and Steve from Gympie, it must be Christmas, with all the calls, visits and dozens of cards. Heather called in with a mountain of flowers, natives, Christmas bush and more. One more sleep.
Christmas Day, 2016
Up early to breakfast together and open our presents. Carly and I started on the food prep while John went to Pennant Hills to pick up Steve and Deborah from the train. We sat down fairly quickly to an appetiser of a few prawns and oysters, then on to the main of a whole roast fillet of beef with roast veges, greens and Yorkshire puddings. I had been careful I thought in planning gluten free alternatives, but as Deborah plunged her fork into a Yorkie, she asked ‘these are gluten free aren’t they?’. Oops, I had completely forgotten to use gluten free flour. Nevertheless, apart from that blunder the meal went off fine. We finished on a mix of icecream, mango, lychees, toasted coconut and lychee granita.
Idled the afternoon away in talk and laughter, Heather popped in again about 6 pm. Dinner was served at 9pm, just a fridge raid from lunch, followed by a tropical sunset dessert of jellies, cream, mango, strawberries and Persian fairy floss. Sat up till midnight chatting. A lovely relaxed family Christmas, but missing Davina, Louis and Millie as they were still slightly unwell. John managed the day really well without even a nap.
Boxing Day 2016
Having a chat over breakfast with Steve and Deborah when we got a call from Len and Mary Regan from Victoria, who were staying in Greenwich for Christmas, suggesting they pop in for a cuppa. This gave me the opportunity to cut the Christmas cake which we hadn’t got around to yesterday. Interesting discussion with Len, who was a transport planner, about the privatisation of Newcastle’s buses and the shortening of the rail line to end out of Newcastle city. Boo to both was the opinion in a nutshell. Privatisation and I are not friends, so I was pleased to hear the professional’s view come down agin it.
After a fridge raid lunch (plenty to choose from) Steve and Deborah set off for home, but returned a while later as Steve had left his phone behind. This gave us chance for another cuppa as the trains were four hours apart.
We were both pretty tired and said goodnight world at 9.30pm, extremely early for us.
December 27, 2016
We had planned that the three of us would go to Manly today, but John wasn’t well enough to go. I reminded him it was one week since chemo, when his side effects always kick in. Chemo week, side effects week, improvement week and back to chemo week. He is feeling under the weather, unable to do much of anything, so Carly and I went off together. Had a job getting a park, but after a few rounds of the beachside streets we got one and then scored a Norfolk Island pine to sit under and make our camp. I had a good swim, the water was great, quite a lot of lifesavers on duty and many people in the surf. Carly had a paddle and we got some lunch from a nearby takeaway which filled the bill. After a shower we headed to my hairdresser Martin nearby for my haircut appointment, always good to have an excuse to go to Manly.
Crossed the bridge to drop Carly off to Davina’s where she will stay overnight and then go back to Canberra tomorrow. Saw Millie and her new second tooth that Santa brought her on Christmas Day, but I was tired from my swim and didn’t stay too long. Good to be home, I am finding it tiring walking around because of tendonitis in my Achilles tendons, it waxes and wanes but has been bad for a couple of weeks, I walk like an old lady, hang on, I am an old lady. John was still fragile, not majorly sick, but weak and generally unwell. He had rejected an offer by friends, while we were out, to come and visit today, that tells me a lot. Had a simple dinner followed by Christmas pud and home made custard, a once a year treat.
December 28, 2016
Went early to Windsor to the library and came home with six interesting books and a couple of pieces of sushi, happy me. He had a call from Dally and we both spoke to Steve and Deborah. A few new movies on but it will be too crowded for John to go I think, so I didn’t mention it. Started a new book, Diary of a Bad Year by J. M. Coetzee, a very unusual work, with three different voices simultaneously written on each page. Quite a feat to keep them so different.
Had a quiet day, made fish for dinner, ‘saddletail snapper’ so called. Yuk, it was an awful rubbery tasteless fish so I looked it up on google and the very first thing that came up was a complaint to Woolworths about how terrible it is and that they should stop selling it. All of about 100 comments were in agreement, most had taken it back for a refund. New fish on me and not one I will ever buy again. Probably dirt cheap at the markets, hope no-one bought it for Christmas, that would really ruin the day.
December 29, 2016
Headed up to Castle Hill for a 9.15 am movie so John could avoid the crowds, it was La La Land which was a good change, a 1950s style musical set in the current day. Unfortunately they couldn’t sing or dance like those of yesteryear. But there was a record 43 minutes of ads! John timed them. Next time we will ask when the movie starts, trailers are ok, but the other endless ads were a bore, that’s why we watch the ABC, we don’t need to pay to see the buggers. Went to T2 and got one of their jumbo cups and saucers each, mine the cat and John’s the monkey. No need for a refill with these. They remind us of India.
Bob and Judy Hill visited for the afternoon, bearing hand made chocolates, with lots of peppermint ones amongst them, yum. While they were here John had a call from his daughter’s ex, Bosko, who is visiting from London and had heard that he is sick. As John keeps saying, you know who your friends are in this situation and that applies to relatives too in his case.
December 30, 2016
John went to his flat to do some stuff with his computer and the internet provider and to spend a little time at home. I stayed here and baked a Flourless Almond and Blueberry Cake which I have been hankering to make for a while. Yum. Spoke to Steve on the blower and recommended this cookbook Sweet Treats for Deborah as it has lots of gluten and dairy free recipes. Got some chores done here and welcomed Davina, Louis and Millie after lunch. Heather called in to see us all and brought some of the 20 gourmet chocolate blocks that she took home from her shop stock for safe-keeping over the Christmas break, but they melted out of shape in her hot car and are now unsaleable, so lots of choccy cooking on the horizon for me. I don’t like dark chocolate, but love cooking with it for others.
Millie settled well tonight while Dav and Louis are out for dinner and seeing the new Star Wars movie. She was going all round my antique furniture feeling the turnings and pulling herself up to standing with the columns. A real connoisseur. John got a call from his cousin Jenny tonight, it brightens him no end when one of the rellies rings. Very hot night, hard to sleep even with a fan going.
December 31, 2016
Happy last day of the year! We won’t be celebrating in style as we had planned early in the year, when John made a booking for the degustation dinner at the restaurant Aqua Dining, overlooking the bridge and the fireworks and serving the food over four hours from eight until midnight. Luckily we pulled out before the payment was due so he didn’t lose any money, it was his new year present to me. Maybe I will get a raincheck for next year if I’m good? Anyway we just went up to the fish shop and bought a mackerel cutlet for him and 6 king prawns and 6 oysters for me and we will enjoy that here together. Drat, I meant to buy a 200ml piccolo of champagne for moi.
Got a Christmas card from cousin Victor in Yorkshire posted on Dec. 7, must have gone via Iceland. We pooled our cards this year and we look extremely popular. John is still below par, gone down for a sleep now (3.30pm) and said it exhausted him walking to the bedroom.
No chance of seeing 12 o’clock this New Year’s Eve. Can’t help feeling somewhat crestfallen, such an unsure year coming up and I don’t only mean Trump!
January 1, 2017
Well NYE was a non-event in this house. Next door’s dogs barked from 7 pm to 11 pm and restarted at midnight when people’s fireworks went off. I am glad I don’t own an air rifle. Words will have to be said to my neighbour, with whom I get on well, sigh. Little dogs are the worst for barking, though the poodly number on the other side doesn’t bother us at all. Perhaps I could buy them a labrador from the pound in exchange for giving away the pesky little numbers they have now? But I guess they like them for some reason. We watched a movie at very high volume to try to drown them out, unsuccessfully. Could see the 9pm Parramatta fireworks on the horizon from the deck, high point of the night.
John went up to see the new Star Wars movie at Castle Hill this morning and just after he left my friend Tim arrived unexpectedly. He is a self-confessed conspiracy theorist who had many tales to tell. I am sure one of his many theories is real but which one? He left advising me to get rid of the wi-fi in the house as the radiation will cause us cancer. Send me the evidence I said and I will read it when it comes. If Charlie Teo won’t let his family use a mobile except on speaker, I am inclined to think there is something worrying there. Though I’ve read that cordless is just as bad. Anyway I plunge into 2017, attacked on all sides by electro-magnetic radiation, struggling to survive it all…………and then Trump.
John is fair to middling with mouth ulcers back and heart fluctuating, but not to the extent it was a few weeks ago. He couldn’t smell dinner cooking when it filled the whole house.
January 2, 2017
Decided to volunteer at Hawkesbury Helping Hands, a grass roots organisation that feeds the local rough sleepers and underprivileged people in Windsor. They also provide clothes, medical and veterinary care, personal items etc. It started when a local girl saw a homeless man in Windsor searching a bin for food and took him home to her mother for dinner. Many of the folks they serve used to call in to see me at the shop or at least chat at the door on their way past. Anyway it isn’t as simple as I thought, I have four pages of identity and indemnity forms to fill out, then I must get a Working with Children Certificate for which I have now applied. Nothing is simple these days.
Feeling virtuous after digging over much of my herb garden this morning, then going out to Herb Cottage at Dural to buy four new ones to replace the deaduns. I used to buy my herbs there decades ago when it was owned by the Hemphill family, their son now owns the Herbie’s Spices empire. I hate gardening so always feel disciplined when I do some, though the herb garden interests me more than the rest, so it gets more attention. Nothing like picking your own herbs while you are cooking. Veges on the other hand are always ready when they are cheap and in season in the shops and are much more work.
Michelle called as we were returning to ask us over, but though I was happy to go, John was worn out by the little trip and needed to be at home. However we will take a raincheck. We were also asked to go to dinner tomorrow with Sue and Robert but as we have another engagement in the daytime tomorrow, I know that John won’t be up to it.
January 3, 2017
Went up to Wamberal to David Simpson’s 70th birthday party and on the way stopped in to see John’s relative Anne Perry in the same area. Anne is on a suburban block with a water view overlooking Wamberal Lagoon and the Simpsons on a beautiful acreage surrounded by lush bush. Caught up again with Judy and Bob Hill who visited us just a few days ago and also Wendy Heys from Newcastle. I was quite taken by the Simpson’s daughter Jo, who was so warm and welcoming, with a face you trust on sight.
John did very well today, we are at the day of the chemo cycle when he begins to improve. It is sobering to realise that today is the day he was to have the stem cell transplant. Scary. I respected his decision to have it, but in many ways I was greatly relieved when it didn’t go ahead.
January 4, 2017
Had a busy visitor day. First John’s friend Rob Hall from Bathurst came for morning tea and just after he left, John’s niece Monica from South Australia arrived for lunch.
John is well and busy on the computer, but has discovered many important photos are missing on his laptop after the data transfer done by the computer shop from his old, now defunct, PC. He is hoping they are just hidden somewhere in the bowels.
January 5, 2017
Tripped off to Darlo for John to have his blood tests and later to see Nada. She was very pleased with him and said he should go back to the cardiologist for his breathlessness. He will have two more cycles of chemo, ending in February, then about three months of recovery, still protected from infection and still taking antibiotics and antivirals. After that? Who knows? If Nada knows she isn’t telling yet, but I suspect she is guessing too.
I am in my jimjams at 4pm, feeling subpar, but nothing a sleep won’t fix hopefully.
January 6, 2017
Sue texted suggesting that John go up to Killcare for a couple of days with Robert. They are coming for dinner tonight and John and Robes will head off up there after the meal. I don’t need to worry about his medical needs while he is with Robert anyway. I threw a Hungarian Goulash in the Crockpot and Sue will bring her bottled boysenberries and custard. Sorted. This meant some minor reorganisation, John went to Lane Cove to drop his computer in to the technician and will catch up with friend Rafe at the same time.
Feeling a bit better today. I have stopped taking my Sjogrens Syndrome drug, Plaquenil, in case it is the cause of my increasing deafness, it is listed as a rare side effect in scientific papers. So it will be interesting to see how I fare without it. The immunologist won’t be pleased but I don’t see him till March, so I will worry about that then. I am concerned that if I keep taking it my hearing might keep heading south, it has got much worse even in the last few weeks. Deafness doesn’t appeal and it is frustrating to others as well.
10pm: John, Sue and Robert have just left, Robes will drop Sue at Pennant Hills and continue on to Killcare with John tonight. Sue and I downed a bottle of bubbly with no trouble. Had a fun night, I am always happy with them, we ‘get’ each other and no comment is too outrageous. Good to feel so totally at home with people. I think I have had a week of being ‘noice’, so it is great to have a night being me.
January 7, 2017
Had a luxurious naughty breakfast of d’Affinois French cheese with crackers, left over from last night. I am not a cereal person and breakfast is often a trial, trying to find something I feel like, but that was super.
Had a mind to finish my herb garden off this morning so I got out and did some weeding, then went out to Dural and bought some chives and oregano pots. Heather rang and when she heard John was away she said we should go out for dinner, so I booked Entrata, a newish place at Glenhaven. Later in the afternoon I was sitting on the lounge having a short chat to John and then woke with a start at a quarter to six! I am not sure if it was lack of Plaquenil or just plain relaxation being here on my own, but it is extraordinary to go off to sleep for hours in the middle of the day like that.
Picked Heather up on time and we went to Entrata. I fared very well foodwise, red snapper wrapped in prosciutto and grilled was delicious, Heather fared less well with a pasta dish she didn’t much care for. We have been friends since 1966 and still find plenty to talk about. We both remember Robert Read from when we worked at Sydney Uni and he was an Agricultural Science undergraduate, who later did medicine. Strange circles of life that he should become such a close friend decades later with no contact inbetween.
January 8, 2017
Another bit of herb gardening to start the day, managing to break the sprinkler was inopportune just before a heatwave. Made a churn of icecream, chestnut and honey, or nesselrode as it is sometimes known. Yum, but very rich.
Robert and Sue returned John mid-afternoon and stayed for some non-alcoholic cold beverages and a chat. John had a great time with Robert including barbequing whole fish last night and a morning swim today, I am sure it did him the world of good. Reheated some goulash with the addition of baked pumpkin and broccoli for dinner. His nibs finished up with leftover Christmas pudding and chestnut icecream, a good match he said.
January 9, 2017
Bought a new sprinkler as a priority, noted at 9.30am the digital thermometer out the front of the college said 39 degrees, 102.2 in the old money. Had an appointment with Bob, who wasn’t too positive on the hearing aid front. He says that despite what audiologists tell you, they just amplify, do not separate sounds well or make things clearer. He is clearly not a big fan, said not to expect too much. Has no idea if hearing will continue to deteriorate or if Plaquenil is the cause. He could give lessons in straight answers, I appreciate it.
Had a simple lunch in the air-con before heading to John’s which was like a hothouse. Went up to Roseville to a movie in the cool, saw French film Rosalie Blum which we both liked and shared a single meal of monkfish, potato, tomato and greens with some garlic bread at Salt Pepper Nutmeg next door. Always good food beautifully cooked. Had an interesting chat in the evening with John’s next door neighbour, whom we both like, about her earlier work as a bookkeeper in a brothel, always a joy to hear another’s life experiences. Our Christmas present to her and her daughter was stolen from outside her door in a matter of a couple of hours. The upstairs stairwell only has three doors, John’s, hers and another flat, which she told us is occupied by drug dealers. I hope they liked the scented candle in the shape of a fox and the pretty soap. So apart from John, his friend next door and a very religious woman downstairs who sends him notes about Jesus, the remainder of the block are all either oddballs or drug dealers. Actually, rereading that sentence, I am not sure I should have made even those exceptions. Baulkham Hills is so dull and monotonous by comparison, but I can live with that.
January 10, 2017
Early start and little traffic so we were the first at chemo, but as always the last to leave. An elderly lady nearby was attended all day by her two sons in their 40s, lovingly and unselfishly attended. It was a joy to watch one of them thoughtfully drape her cardigan over her IV line so it wasn’t so noticeable.
Tonight after chemo we went to visit John’s old friend Charlie Bowers, who has been in St Vincents Hospital since Boxing Day after being knocked over by a push bike rider on the footpath in Kings Cross and suffering a brain injury when his head hit the footpath. He doesn’t look good at all, is being tube fed and didn’t seem to recognise us, though we had a coffee with him just a few weeks ago. I fear for his future after this injury. It is a bugger sometimes having no god to pray to, but better to try to do some practical things for him if we can.
January 11, 2017
I hate burnt toast! This morning John grilled me some ciabatta which went a bit far. Cross with himself he hurled it into the bin, newly emptied, and said ‘now what are you having?’. We both burst out laughing and I said ‘I fancy what you just threw in the bin’. So out it came, fine with a few judicious cuts, but worth it to see a rare example of temper from John. It was delicious. I’ve threatened to embellish the story to his rellies, about how he made me eat my breakfast out of the bin.
Chemo went well, had a visit from John Hill in the afternoon. John drove me to Davina’s to spend time with Millie at dinner and bathtime, while he spent time with Charlie Bowers. He was more responsive, but can’t swallow or speak and is paralysed down one side. A very long road to recovery I think. Dragged a cooked dish out of the freezer for John tonight (love precooked meals in the freezer) and I just had a piece of Christmas cake and a cuppa.
January 12, 2017
Got some weed matting, coriander plants and potting mix to continue the herb garden makeover. Found a use for the big old cast iron boiler with a hole in its bum, as a planter for the coriander. By the time I got back from shopping it was too hot to garden, so I spent some time making chocolate walnut slices to take to Bronwyn and Michael’s dinner tomorrow night. Heather called in with 16 fresh sardines, after my telling her how much I enjoyed the grilled ones I had at Michelle’s Fish and Co luncheon. I baked them with garlic, parmesan, herbs and breadcrumbs and they were fabulous. She has been bringing seafood regularly since John got sick. Bless.
Gave John his Neulasta injection this afternoon and just for fun looked up the cost. It was $5752 per 0.6ml injection! Faaaaark, he is getting it for zip, zero, nix. I immediately looked up the US price, thinking of all those poor uninsured buggers and one woman was paying $7618 per injection with her insurance kicking in $3000 per time, for her this is once a month for 12 months on top of all her chemo drugs. The total came to $133,600 for one year, almost what she paid for her house. But some people were reporting costs up to $14,000 per dose. I guess if you are not insured you can simply die without it, as it is to replenish the white cells that the chemo kills, to help avoid infection. Pity those poor folk who get it there now, but may not under Trump, how terrifying. I will handle that ampoule with a lot more respect next time I give him the needle.
January 13, 2017 exactly midnight
Went out to Windsor today for a morale visit with my 90 year old friend whose pension has been drastically reduced due to a Centrelink computer in Canberra trumping common sense at the local office. He got the dreaded “Letter” just before Christmas to tell him that his block of land, which can’t be built on, as it is zoned as a future park, has pushed him over the new assets limit for the pension. It is valued on his official Land Titles Dept documents as worth $23,000, but Centrelink’s computer has valued it at $400,000, therefore his pension has already gone from $880 to $271 per fortnight. He also has documentation from the local Windsor office confirming the lower valuation has been confirmed and the fact that his pension will remain at the full rate. It is at least two hours to get through on the phone and he can’t use a computer. He is so stressed by it all and I can’t blame him. Economic rationalists be damned.
Tonight we went to Bronwyn and Michael’s for dinner and enjoyed an Ottolenghi meal, Bronwyn’s speciality. The chocolate nut slices I took were so-so said John, that is the problem when you cook things you don’t like yourself, you can’t taste test. Oh well, that’s one recipe I won’t be doing twice. Hot as hell here, at John’s tonight, but we may go for a swim tomorrow.
January 14, 2017
I think they said it was the hottest Sydney night on record? A stinker. Went to Balmoral about 9am and had a wonderful swim, water was beautiful, milk shake on the beach, yes.
Came home to Baulko and laid the weed matting on half the herb garden, planted coriander in the big old cast iron pot. John well and cheery, all is right with the world.
Both of my girls independently decided to help Brian in his Centrelink fight. Davina contacted Legal Aid and Welfare Rights for him, wrote a ripper of a letter to Turnbull and will send B. a food hamper. Carly asked for the phone number and address to contact him with similar intent. They make me so proud.
January 15, 2017
Aaah, a bit cooler today. Did a very short stint in the herb garden (only up for short stints these days!). Sent off my six pages of application as a volunteer at Hawkesbury Helping Hands. It included the sentence “I understand that my time with HHH may in some situations involve inherently dangerous activities” and that I release HHH from all liability for my injury or death. Everything is so damned legalistic these days but I suppose we litigious folks have forced this development.
Went to Michelle and Kev’s for a cuppa this arv to say farewell to her sister Charlotte and husband John as they leave our oppressive heat and return to freezing England. Kenneth rang me from Halifax tonight and says the weather there is dire. Would love to be there with him debating climate change, Trump, Putin and more but for now it must be by phone. Who knows when we will get together again.
January 16, 2017
Made a great curry last night, enough to freeze three more meals. It was Cochin First Class Railway Curry out of Rick Stein’s book India. Apart from the terrific flavour it had emotional resonance as John and I took a first class journey on that very train with Terry and Rob, but didn’t eat in the diner. Still recall the shock of seeing those travelling in cattle class, well named in this case, when we got off at our destination. Aaaah, India.
Made an almond and mandarin tart today out of a book I must have had for more than 40 years yet I had never tried it, the recipe is a keeper, delicious.
Went to see Sonia and George in the afternoon, diverting via Beautiful Blooms to pick up the flowers that the book group is buying for her after the death of her best friend Hilda. Heather did a wonderful job as usual. Her skill lies not only in the floristry but in being able to match an arrangement with a person, in this she succeeded completely. Sonia talked about her friendship with Hilda and about how they communicated daily for 51 years, even going back to pre-internet days when they wrote each day. That is a huge hole to fill. John said it was probably the worst day he has had since starting chemo.
January 17, 2017
John feeling better today so he was able to stick to plan and go into town to have elevenses with his seminary mates, driving to a friend’s house at Naremburn and going with him. Terry Quinn is over from WA to see Charlie, their friend in St Vincents, who responded by recovering some speech yesterday, which is both surprising and very pleasing.
Brian rang to say that a courier had delivered a box to his door and it was a food hamper full of treats, from Davina. He was blown away and I was a proud mum.
Spent the day on shop paperwork tying up the loose ends ie bills that had to be paid after the shop closed and the proceeds of the auction. Trying job, but it is nearly done and won’t ever need doing again. Looked up my Centrelink file online and there was a note saying my pension is going down about $48 per fortnight later this month. Why?? No idea, the Jan. 1 drop in pay was supposed to be a one off. Groan……………… now I need to sort out yet another thing with them. I think they have fined me for slagging them off in this blog!
January 18, 2017
Set off to mind Millie at 8.30am via Victoria Rd and arrived there at 10. I had decided to check if this way or the M2 was the furthest. Interestingly and surprisingly, the trip meter proved that the M2 is 5.9 km further, but it took me only an hour to get home that way. Millie was a happy camper and she was quite fine waking up from her sleep to grandma rather than mum. She has been saying dada for a while but I heard a few mamas today.
John was unwell today, he went back to bed as soon as I left and slept again in the afternoon, only waking when I accidentally tooted the horn getting out of the car at 4pm, but he still enjoyed the green apple macaron Dav sent home for him. His pulse was just 38 today, so just as well he rested.
January 19, 2017
Today we went to Parramatta to have a look at the two new tower buildings I have been watching on the horizon from my bedroom window (I also see the red light on top of the crane at night when I am sitting on the loo). They have intrigued me for months.
We went up to the 14th floor display unit of the taller one, Altitude, and saw a very small 2 bedroom unit which sold for $1.175 m a week ago. In fact almost all of the 2 bedders are sold, most off the plan, there are over 300 in total over 50-odd floors. Across the river I could see the building I lived in during part of the 60s, when it was lauded as the ‘tallest residential tower in Parramatta’. I lived on the top floor, the sixth, with panoramic views, so I thought. Friends used to come to watch fireworks on the river once a year and I walked over a footbridge to David Jones for my groceries. That is now the site of Altitude.
Then we went to the Parramatta campus of Western Sydney University to an art exhibition by my friend Greg Hansell. It has been on since October and ends tomorrow, but I only found out about it when we were talking on the phone a few days ago, so I hadn’t been able to advertise it amongst friends. He is a genius in drawing, painting and especially pastels, he is one of my favourite artists. This exhibition didn’t disappoint.
John isn’t great at the moment, now he has a mouthful of blood blisters, the worst so far, and today he got exhausted just bending down to pick up a fan he had knocked over. His breathlessness is worse and his pulse rate today was just 38 again. Not good, but he insisted he still wanted to go out and do things today, level walking seems ok.
January 20, 2017
John still not too well. I am trying to organise sight-seeing trips in Sydney since we can’t go away or even plan to for a while. So we went to another art exhibition, this time at Campbelltown, of the paintings of Myuran Sukumaran. I don’t know how many there were, certainly many dozens, 12 painted in the 72 hours before he was executed with Andrew Chan in Indonesia. One of the most arresting exhibits was a room with a large blown up video of each of them, just sitting staring at the camera, calm, just breathing. It is too tragic for words, the waste of these souls, for what?
Then we walked down the main street, luckily flat, and took in the historic buildings mixed up with the 2 dollar shops and charity shops. Had a good lunch at Essen, we share meals now when we go out and it seems to work well, guilt free on the calorie front and very cheeep. No word from Centrelink for either Brian nor myself by the way.
January 21, 2017
Trump Day One, how terrifying. He is everything I loathe, but I am not alone there.
John is a bit better today, but we are having an at home day anyway, as we have a few commitments next week. I did some more gardening, getting rid of the overgrowth of fishbone ferns around the herb garden. Went up to the cake decorating shop looking for inspiration for Millie’s first birthday cake. I fancy fuchsia colours, red with mauve and purple, but we shall see. There is a class on for a wonderful two-tier cake with a birdhouse and bird on top in icing, but the class is on the day of the party. Drat, I would have done it.
January 22, 2017
Had a surprise call from my old friend Nicholas Shalavin whom I have known since my teens. He was down from his home in a village north of Grafton and came over with his mum Tanya to spend the day. Had a simple salad lunch but I was glad I made a Victoria sandwich yesterday, which was ready to fill with raspberry jam and cream for afters. Nick and I talked of friends past, many of whom died in the AIDS crisis, but are still fondly remembered. As usual we argued politics, it is a change to debate someone from the other side instead of just reinforcing each other’s views. Michelle popped in for a while and backed our team and we had a long talk with Steve in the late afternoon.
January 23, 2017
Went up to Windsor to pick up an ordered library book. Saw the All Dressed Up exhibition at the gallery there but was underwhelmed by it. Still haven’t heard back from Centrelink……. Went to Roseville Cinema to see Lion. It was very affecting, so much so that I don’t want to write any more about it tonight.
January 24, 2017
Went to see John’s cardiologist Prof Gemma Figtree. Nada had sent him because of his frequent and extreme breathlessness. Gemma put him on a 24 hour heart monitor to see exactly what’s going on. But she is sure it is neither his low haemoglobin nor a ‘plumbing issue’ that is causing it. She will do an ultrasound /echocardiogram in a couple of weeks. I asked Gemma the same question I had asked Nada a couple of weeks ago. ‘Could the chemo, particularly the doxorubicin, have weakened his heart muscle?’ ‘That’s a real possibility’ said Gemma. Which is very interesting as Nada had answered the same question with ‘No, nothing to do with the chemo at all, you need to see your cardiologist as it isnt anything we are doing here that is causing it’. I trust Gemma’s opinion implicitly. So where does that leave us with Nada? Confused as per usual.
Went to Balmoral as planned but John couldn’t swim due to the monitor. I had two long swims in the blissful water and we ate seafood and chips by the water. Late in the day we went to see the movie Jackie at Cremorne on the way home. Didn’t think much of it and couldn’t understand the good reviews.
January 25, 2017
Went to Royal North Shore for John to have his heart monitor removed, then over the bridge to Kinghorn for his blood tests. This made us very early for Nada’s appointment, so we walked through Kings Cross to Potts Point to have lunch at Zinc. Lovely food as usual and as cheap as chips, well in fact much cheaper than the fish and chips we had yesterday, $12 per meal of slow roasted lamb salad and vegetarian fritters with feta and salad. They can’t do a bad meal there.
Nada was running quite late and surprised us by suggesting John have a blood transfusion to help his breathlessness. Odd seeing that Gemma said yesterday that it wasn’t caused by low haemoglobin. I mentioned that to Nada and she said ‘Oh I agree, we might do a transfusion if it drops below 80’, which it hasn’t done at all since chemo started. We shall see what it is on Monday’s blood test, but hopefully it will be unnecessary. I didn’t rock the boat by repeating Gemma’s opinion that the chemo itself is causing the problem. Keep that powder dry I think. Stopped in at John’s for dinner to let the heavy traffic pass.
January 26, 2017
The next door neighbours, or their son more likely, held a party last night. Unusually there was no music but they woke us up at 1.45am with singing? hammering? god only knows what. It ceased after 2.15 so perhaps the bobbies came, I have no idea, but we slept in today as a result. Australia Day isn’t an event on our personal calendars any more we’ve discovered, we didn’t even give it a thought this morning. Perhaps we have fully accepted the Invasion Day alternative or else it is that there seems so little to celebrate in our current divisive flag-waving yobbo culture.
Thinking back on the last couple of days I realise that we have an expert technician as John’s doctor, but certainly not a philosophical medico in the shoes of Atul Gawande, Ranjana Srivastava, Sherwin Nuland or more latterly Paul Kalanithi. Mmm, is it relevant that three out of four examples are of Indian extraction? We are thankful for the technical expertise but still at times rue the lack of someone who can put it all into a perspective that includes empathy, wise counsel and emotional intelligence. If we need that in future we will need to find another source.
January 27, 2017
Prepared the makings of an Asianish salad to take to our book group lunch at Sue’s. Picked Carol up and had a good run up to Killcare. As usual the views of bush and ocean were divine, a great backdrop to our meeting. Sue did a tomatoey prawn dish which was yum and others brought varying delicious contributions. An amazing looking boysenberry cake turned out to be full of chocolate mousse so I wasn’t a partaker, but it got 10 points for beauty. The book The Moon and Sixpence provoked good discussion, with a few of us disliking it for various reasons and others finding it more to their taste, though I don’t think there were many who rated it as among our best finds.
Robert took folks on tours of the house and ‘the farm’ though those who came back from the latter reported dense swarms of mozzies and brought many back with them! I was still swatting one as we neared Sydney on the way home. A successful meeting in both the social and literary senses.
January 28, 2017
Talked to Martha yesterday about a paragraph in Maxina Beneba Clarke’s book about West Indian/African members of the First Fleet who lived in and around Pennant Hills, which became known as Dixieland. She had never heard of this and is editing a history of Pennant Hills for a friend. I checked it on the net tonight and there is plenty on there confirming the story so I’ve sent a link to Martha. Amazing what we were never told.
Met up with David and Mary Bogan, our dear NZ friends, at Green Peppercorn restaurant in lower Pitt St in the city. It was so great to see them again, the first time since John got sick. I wish they were closer (not that I would wish Australia on anyone at the moment). I felt sad when we parted. The restaurant turned out to be a good pick, the fruity shakes we started with were divine, mine was mango, custard apple and coconut. As David said, it was worth going just for them. But the food was extra good too, Lao and Thai, though I passed on deep fried chicken feet and raw tripe, for something less adventurous. Full marks for authenticity and flavour. We will be back for sure.
Went to see the film Moonlight afterwards, one of the few films I have seen without a single white character. It left me with a lot to think about, though I missed much of the African American patois, but realised it was the feel of the film rather than every word which was important.
January 29, 2017
Last night as we were coming home from the city we decided to treat ourselves with a sweet tart each in lieu of dinner, after our big lunch. Stopped at Zumbo in the QVB and they were just closing, our desired lemon and passionfruit tarts were still visible on a trolley though, other leftovers were in black bags. Do you think I could talk the young man into selling those tarts to me? Not on your Nellie. The till is closed, he said. Yes, but the ones we want are just there, on a trolley, (waiting to go to the pigs I was thinking). The till is closed, he said. I lust after those tarts still, 24 hours later. My staff would have served us, even long after closing, it was a rule that we always kept open till the customers were satisfied, even if they were ‘just looking’, but I guess the pigs were well fed last night at least.
Baked some cheese and satay cookies today, but the only brand of satay sauce I could buy the other day wasn’t Asian, so they weren’t as good as they should have been. Next time I will wait till I can get to an Asian store for a decent one. Also did a muesli and dried apricot slice, though it turned out a bit crumbly, not my day in the kitchen. Robert called in unexpectedly and I gave him part of it still warm to take home, before realising it was crumby, haha. Going into the last chemo week, I need to have supplies on hand as cooking time will be limited. God, last chemo week, how scary is that? What comes after?
January 30, 2017
I girded my loins and went to Centrelink this morning after waiting two weeks for a reply to an email I sent which promised a reply in 2-3 days. Met a lovely man in the queue who said he had been here 40 years and had only been abused on the street in the last 5 or so. Thanks for that John Howard, you were the one who reintroduced flagrant racism to the country and it has gradually grown ever since. He had lived happily in NZ ‘where that would never happen’ and somewhat regrets coming here, as well he might. As usual the Centrelink person was helpful and very pleasant. She apologised that a letter that should have arrived from them never did (my man friend in the queue spoke of their letters that never arrive). So my pension has gone as low as it is going, which is a relief. At least until they tamper with the rates next time.
John is a filmaholic so it was with great surprise that I heard the words ‘I think it is too hot to go to the 4.30 session today, let’s just stay here in the aircon till later tonight and then go on to my place’. Early start for chemo tomorrow so we need to stay at Lane Cove (no aircon, groan). It was only 43 degrees in the shade here today, he is getting to be a softie.
January 31, 2017
Funny old day today. We were at chemo at 8.30 after a terribly hot night. But for some reason we were there till 6.30 tonight, they must have set the drips a bit slower than usual. John’s haemoglobin was 99 so no talk of a transfusion, gladly.
Decided to take a wander down to the Medich murder trial at the Supreme Court. I pressed the button to cross King St and more than a dozen photographers came hurtling towards me, snapping madly. Then I realised that just behind me was Ron Medich himself, surrounded by his barristers, led by Winston Terracini. We all crossed together and in the subsequent melee I took a glancing blow to the head from a press camera, whose owner kindly apologised. I was approached by Phillipa McDonald, the ABC reporter, who asked if I was a relative of Medich, presumably wanting a comment if I were! Anyway, the court procedings were fascinating, as most criminal matters are, and some hours passed in thrall. I fear I could become addicted to this trial, with the plot of an exciting book. Multimillionaire property developer makes good from a Westie beginning and at the peak of his career is charged with the murder of Michael McGurk, an alleged standover man, fixer and debt collector, a lender of last resort, a property developer and the director of 28 deregistered companies. It is so Sydney.
February 1, 2017
Well, I felt the last day of chemo came more quickly than I had expected. Six cycles seemed to be such a long time, but it is all over now. Said goodbye to our favourite nurses, but really John is a sausage in the system and there are plenty more coming along. Now we wait for a PET scan in about 8 weeks to see if any visible cancer remains though a scan can’t pick it up at a miniscule level. Nada has said it is unlikely to be totally killed off, but we can’t afford to dwell on those words. We shall wait and see and just hope she is wrong on that prediction.
I am told yesterday’s court melee was on all three commercial TV channels last night, with me clearly visible in the middle of it. Perhaps the ABC had it too but we were late home and didn’t see the news. I took the opportunity to feed my addiction again today and spent three hours in court listening to Lucky Gattelari giving evidence. He was a convincing, careful witness, by no means a dummy, despite his values being just a tad questionable. Phone intercepts proved interesting listening but I had disciplined myself to leave at lunch so I missed many. Unlike ICAC hearings the transcripts are not available online or in hard copy so what you miss, you miss. Maybe a good thing as I was sometimes reading particularly fascinating ICAC transcripts at 2am! Cheaper than ice, I say.
February 2, 2017
Morning appointment with my dentist who tells me my assiduous teeth cleaning, which he always praises, has exposed the roots, so they will need filling as they don’t have protective enamel. Sometimes you can’t do right for doing wrong. Off with John then to see our doctor Bob for a routine visit, all ok there. Bought monkfish (or stargazer) for dinner, used to seeing this in restaurants but never seem to be able to get it in a fish market, so that was a nice change. Visited the cake decorating shop and bought some candles for Millie’s 1st birthday cake, now I just need to work out a design I can pull off with a reasonable result.
February 3, 2017
It is 5am and I have been awake since 2, so I might as well be doing something. Have already answered many emails, checked Facebook and read the Australian and US papers. I don’t know if anyone else in the world wakes in the middle of the night in fear of Trump and what he is capable of, but I do. Destroying most of the planet would just be another feather in his maniacal cap. This on top of my many concerns about John is enough to ensure the night ended at 2, of course needing to get up to the loo from 3 to 6 times a night doesn’t help. I sometimes feel like a bladder with a person attached and after three urologists over 20 years, two of them professors, one major operation, too many tests to count and enough GP visits to bankrupt Medicare, I have to accept that there is no answer this side of the grave. Whinge over.
In John’s visit with Bob yesterday, my instinct to advise him not to accept the offered blood transfusion was proved valid. As Bob said, every time you have one it adds more antibodies and makes it harder to get a match when you really need a transfusion to save your life. Not to mention all the things that can go wrong with the procedure itself. I was so glad I insisted on storing my own blood for surgery years ago, despite the mocking of the horrible misogynist surgeon, who called it ‘totally unnecessary and a waste of time’. In the event I needed three litres!! A slip of the scalpel perhaps?
Went for a long lunch today at Ken and Janine Oates’ house in Balmain, lovely to spend all day there as we hadn’t seen them for a while. We may have called in to Zumbo in Balmain afterwards to pick up a passionfruit tart for the weekend or is that just an evil rumour?
February 4, 2017
Spoke to my dear friends from the south coast who have been tormented by the neighbours from hell (read painted graffiti, eggs thrown and windows and screens smashed with rocks at 1.30am). They are selling their lovely retirement house at the beach as a result. The one good thing is that they will try to buy in Sydney and we will see more of them. Had a good long conversation with Carly.
Worked out a design and colour scheme for Millie’s birthday cake, now I just need a skill injection to do a good job of it and also some nice cool weather at the end of the month. She is a leap year baby.
We always argue about the shopping, as in who will pay, both insisting we be the benefactor. Today we did the fruit and veg at Harris Farm first, John paid and it was $64, then Woolies, Maureen paid and it was $64. No room for argument today I guess.
February 5, 2017
We went to an early session of the new film Manchester by the Sea this morning and I am still overwhelmed by it. We both agreed it is one of the best films we have ever seen, every reaction in it is just so real, the acting is superb.
Had Martha and Phil over for dinner, lovely to sit around and chew the fat. It ‘was come over for dinner’ rather than a dinner party, just what we normally eat and paper serviettes rather than damask. Martha asked me to join the monthly sewing/craft circle but apart from sewing on the odd button I don’t do anything like that any more.
For the last three days I have had a bright white light flashing in my peripheral vision in one eye. At first I thought it was a reflection off a bevelled mirror or something. Last night I was a bit shocked to discover that it is there even in the dark and even when my eyes are closed. Spooky, I think I had better try to bring my March ophthalmologist’s appointment forward if I can to see what it is.
February 6, 2017
Went out to Windsor to go to the library and to visit Brian. It was horrendously hot, so I didn’t stay past late morning. John my gardener turned up and we discussed a few things that need doing. It is a very informal arrangement, he comes when he feels like it, stays as long as he likes, does what he thinks needs doing and lets me know when I need to give him some more money. Works for us both, I have always hated being a boss, I feel much happier with loose unstructured collaboration.
I started my new Herman Koch novel, Summer House with Swimming Pool, which I want to ration into small reads as this is my last unread novel of his. His other 5 novels have yet to be translated from the Dutch. He does bad characters so well, the first couple of chapters in this one feature a doctor who hates exposed human bodies and the descriptions of his medical practice are quite excruciating as he tries not to look at his undressed patients. Bizarre, but he makes you sit on the edge of your seat the whole time, I forget to breathe when I am reading him sometimes.
February 7, 2017
What a day. First to John’s news. He had an echocardiogram and then saw Gemma, his cardiologist at RNSH. Her summation of his tests was that the chemo has damaged his heart muscle and that is the cause of his breathlessness. You read it here first folks, I suggested that as the cause from the beginning, but Nada wouldn’t have it. She has sent a letter to Nada to this effect and prescribed a drug which will assist the heart muscle to heal. We go back in May and will ask then about the long term effects, I am not sure if this can be fixed or nay. I wasn’t with John to ask that question as I was at the time indisposed in the Emergency Department of the same hospital!
I have been experiencing white light flashes in one eye since last Friday, also I had something in my vision, like a floater, but static and larger. So on the way to John’s appointment today I rang my ophthalmologist’s office to ask if they could bring my next appointment in March forward due to the light flashes. It was like shouting ‘Fire’ and she asked me to come in immediately. I explained I could not, but I could come Wednesday. No, she said, you must be seen today, but I had a long-standing hearing test appointment at 1.45 at Macquarie Uni. Eventually I was advised to go straight to casualty, do not pass go, nor collect the $200. The triage nurse put me in at the head of the queue and I saw an emergency doctor who said I may have a torn retina and not to eat or drink as I could need surgery.
Eventually I was sent to an eye specialist within the hospital who decided I had Posterior Vitreous Detachment, where the jelly inside the eye shrinks and pulls away from the retina and sometimes tears it in the process. The thing I can see he described as ‘a piece of the glue which holds the vitreous to the retina’ ugh. The good news is there was no tear ‘yet’ but I need to go to my ophtho in the coming weeks to make sure that situation continues. He gave me a list of things that could happen which would require an immediate return to the hospital. So between us we have used a goodly amount of the tax dollars today. Needless to say this took all day and I didn’t make the hearing test.
February 8, 2017
John is feeling pretty flat, middle week blues plus feeling off colour. He went back to bed for a lie down and decided on an easy day at home. I went out for a bit in the morning, but spent the rest of the day at home.
Millie was due to start child care on Monday but came down with a gastro bug on Sunday. Louis took time off to look after her as it was Dav’s first week back at work after a year off. Today she was fine but tonight she got suddenly sick again and as I type this I am waiting for a call from the children’s hospital where they have taken her, fearing dehydration from all her vomiting.
February 9, 2017
Millie was at hospital till after 1am and is slowly recovering.
John has been diagnosed with cardiomyopathy, caused by one of the chemo drugs, Doxorubicin. I have suspected this for quite a while as his heart symptoms started immediately after the first chemo and have got gradually worse. His lymphoma specialist denied the possibility when I raised it with her a month ago and said ‘you need to see your own cardiologist as it is nothing to do with what I am giving you’.
The cardiologist has now finished her tests and told John ‘the chemo is responsible for damaging your heart muscle, the tests show there can be no other cause’. So there we are. The chemo was never optional really, however it would have been good to be informed of the risks of this happening. Apparently the risk of this with Doxorubicin is around 11%, not insubstantial. He is feeling pretty unwell today, as usual in the middle week, but the breathlessness is worse too. Here’s hoping the new medications Gemma added to the mix will help with the heart issues. We plan to go to stay in Gerringong next week, Carol and Jack’s gift for John’s 75th, and that location satisfies the recommendation not to be more than half an hour’s drive from a major hospital, Wollongong in this case.
February 10, 2017
John is still feeling a bit low and his breathlessness is worse so we stayed in today. He sometimes does the washing but that involves a flight of stairs to the laundry and line that he can’t manage at the moment. Now there is no more chemo we should get a sense of whether this heart problem will improve or not.
I can’t seem to get any enthusiasm for putting some odds and ends on ebay, it is always tomorrow, the same applies to the rest of the paperwork for my accountant in finalising the business….. I guess I will wake up one morning with some zeal to begin. Maybe.
February 11, 2017
Had a bad sleep, but not due to the weather. I seem to remain positive during the day, but at 3am I can only see negatives. Sat up on the lounge and talked myself into ‘one day at a time’ mode and eventually got back to sleep, at dawn as is often the case lately.
Went to Carol and Jack’s to collect the keys for Gerringong, then on to Martha and Phil’s to pick up the book group novel to read while I am away. John struggled with walking to the door at each place, his heart is pretty crook at the moment. Gerringong will do us both good, but we will need to drive everywhere.
February 12, 2017
Left Baulkham Hills in heatwave conditions and arrived in Berry to cooool and misty rain. Wandered the main street and got a beautiful pie at the bakery followed by one of the local Kiama Dairy icecreams. (We are on a health kick). There are two bakeries in Berry, a very ordinary one and an excellent well known one. The basic one has a sign in the window ‘Yes this is the famous Berry Bakery’, cheeky. There are also two icecream shops, one has artificial mega brightly coloured stuff and the other has locally made natural icecream from Kiama Dairy with flavours like Cinnamon with Rhubarb and Ginger Jam or White Chocolate with Raspberry and Rose. Strangely the two shops seem to be equally popular, which is another of life’s little mysteries. Did a bit of grocery shopping, though we brought some of our own food such as a curry already cooked and other bits and bobs, and were ensconced in The Stationmasters Cottage by about 3pm. Had a good talk to Sue in the evening and now I am writing this as a document because we can’t work out how to access the internet and have already bothered our hosts twice just to work the TV. Not very techelogical us.
John is somewhat better today. Is it going away that has helped? Or is he getting over the chemo effects? Or is the new heart medication working? Who knows, but whatever it is, we are happy.
February 13, 2017
We worked out the internet this morning, hurrah! I saw a cable on the floor not attached to anything and told John to plug it in to something, that was my contribution, and he plugged it into something (I need not know what) and bingo. He is a genius.
I finished the William Faulkner novel As I Lay Dying last night. I nearly gave it away early on, stream of consciousness is not my thang, to use the idiom of the novel. But the further I went the more engrossed I became and now will read the 250 pages of literary criticism that follows, including university interviews with Faulkner from the 50s, discussing the book. It is bizarre, inventive, cruel, almost like a film in its imagery, but also difficult, obscure and at times intensely annoying when I couldn’t fathom a paragraph. I am glad I persevered. The Southern American dialogue is wonderfully done, you can almost hear it and it reminded me in some small ways of my Yorkshire grandmother telling me to put on my dressinggownd, in the book they refer to someone wearing a nightgownd. Apparently some of this Southern dialect harks back to the Scottish early immigrants, not too far north of my grandmother’s Yorkshire origins.
I did a walkthrough of Gerringong today while John stayed here. I love going into all the little shops in a town, not to buy anything, but just to see what is being offered in a particular place. We drove down to the ocean baths at dusk and had a short walk. John is feeling quite a bit better today so we may get in a swim tomorrow.
February 14, 2017
After that heatwave I will not complain about cool weather. But I make the point yet again that each and every time we go away to the beach the weather turns from hot to cool/wet on day one and then turns hot again on the day we leave. Today I am in my thick fluffy cardigan which I luckily threw in at the last minute.
This morning I rang our Callala Beach friends in the hope we could team up today or later in the week, but D. is suffering serious anxiety and depression after their home was attacked by ‘neighbours’ and peppered with eggs, paint and rocks, doing considerable damage. He is in no state to visit here or to be visited.
We took a drive down to Kangaroo Valley for the day, lovely views on the way and a charming village atmosphere once you arrive. Spent time at the 110 year old stone Hampden Suspension Bridge and wandered the town looking at some of the old buildings there. Bought a couple of books for Millie at one of the shops there and fell in love with a carved wooden rabbit in a shop window, luckily that shop was closed, but I see his lovely face still. Had a late lunch at Berry on the way home, again at the Milkwood Bakery, a spinach and feta roll for me and then a Pines banana and coconut icecream across the road, just a single Blowing a very cool southerly now but cosy indoors. We shall have our curry for dinner, good weather for it. Shall I pop my piccolo of bubbly with it? Thinking.
February 15, 2017
Another perfect day in paradise! The best way to get the weather to be more beachy is to threaten to swim regardless, and voila, swimming weather. Went down to the ocean pool in Cooke Park this morning and while on my swim cum wildlife expedition I discovered a strange looking lump of sand in waist deep water. I decided to poke it with my foot and it turned, as if by magic, into an octopus. It ogled me with its big eyes and decided it would return to its home, a nearby cave between two rocks, allowing me to follow its progress and marvel at its graceful locomotion. I kept swimming back and having a stare off with him as he peered out of his safe house. Note to self, buy a snorkel and mask.
After lunch we went into Kiama to do a bit of shopping. So we descended on Kiama Farmers Market and spent way too much as usual, there and at Flour, Water, Salt. Oh, and Pines Icecream had a stall at the market………….Honey, Cinnamon and Macadamia today and, well, I couldn’t let that pass could I?
Tonight we had a (very little) walk on Werri Beach and ate barramundi and salad at the fish shop by the beach. On the way home we had an outside look at the old house which is up for auction in Fern St, the oldest house in the town apparently, it looks lovely. I will ask the agent for the estimate out of curiosity. One never knows when one might inherit from a mysteriously reclusive relative, it happens. Needs to happen quickly to snap this one up though.
February 16, 2017
Down to the pool early for another good swim, John sat it out doing puzzles while I searched for my octopus friend unsuccessfully. I love a feed of char-grilled octopus but am mortified by the prospect of someone killing this guy who is well big enough to spear and eat. Such is the dilemma of the guilty carnivore. The surf beach looks a bit dangerous to me when not patrolled, I am happiest in the pool, not scanning the water for dark objects or wondering if there is a rip.
Had a visit in the afternoon from Michael and Jane from Robertson and Paul and Margaret from Jervis Bay, it was great to see each of them. Passed the afternoon chatting, with the obligatory house and garden tour included.
February 17, 2017
There is a very large 2-storey surf shop in Gerringong, so I was confident when I went in there this morning to buy a pair of goggles and a snorkel. My confidence was misplaced however, amazingly no such items were in stock, so my plan to search for the octopus was thwarted. Despite that we both enjoyed a swim in the ocean pool, swimming doesn’t bother John’s heart like walking, or even bending over, always does.
After a fridge raid on salad leftovers for lunch I suggested a trip to Gerroa as I was itching for another swim. John rested in the car as I walked around the estuary in the water and, seeing a thunderstorm approaching, decided on a quick dip in the surf, breaking the rule about swimming alone and living to tell the tale. Why exactly do I live an hour from the beach when I love it so much? I would happily go to the beach every day, to walk all through winter and to swim all summer. I didn’t fully realise when I was young that this is not a rehearsal for life, you only get one chance at it. So you need to plan a life that includes doing the little things that you really love every day, not just for 2 weeks a year.
February 18, 2017
We were just about to start packing up this morning to leave Gerringong when Rachel rang to say that the dinner party at her house tonight is off (or at least our part in it) due to her John waking up with a cold. We will be seeing them in two weeks for another social occasion.
So we discussed the possibility of our staying here another day and I rang Carol who was happy to give us that opportunity. We decided to go to the markets in the town which are on once a month and found them buzzing with people, in fact the bank had a long queue at the ATM. Bought sets of lovely locally produced cards, John’s with drawings of insects on them and mine with designs from antique Chinese porcelain. I also got a beautiful dusky pink woollen cardigan for Millie from two ladies who specialise in baby and child hand knits, it matches the reversible pinafore I got at The Collective at Kiama. So a successful market, for me and for the stallholders both I think.
Back at 12 noon just before a ferocious storm, rendering our previous watering unnecessary. We didn’t swim today, not because of the cool temperatures, but because of the lightning which continued on and off all afternoon. Coming back from the swim at Gerroa yesterday I saw a vertical bolt from sky to earth slightly to the west of here which was so dramatic it reminded me of the little girl who was killed by lightning when I was at primary school, it hit her hairclip and killed her instantly. Not as much of a rarity as we like to imagine.
February 19, 2017
After my comments on lightning strikes, it was on the news that three women had been stuck at Bowral, just over the mountain from where we were staying. Not sure what time it happened but it set me thinking about that massive bolt I saw. Today we went again to Gerroa, walked along Crooked River in the shallow water and then back to the estuary and along the sand bar to the river’s mouth, then a little way along Seven Mile Beach. John was fine with it as it was all level and we walked very slowly.
Last night he commented that he wondered when he could go back to table tennis, this after becoming breathless just getting into bed. I hope he sees some improvement soon, as he is severely limited at present. We packed up all our goods and chattels at the house and ferried them into the car, I am sure we are taking home more than we brought. Had a good trip home listening to classical music, which always makes time pass agreeably.
February 20, 2017
Went up to see Dr Bob and John asked if/when he could get back to table tennis. Bob didn’t look too hopeful and said he didn’t know. In relation to John’s difficulty bending over at all, he hypothesised that the chemo which damaged his heart may have also damaged his diaphragm and intercostal muscles, resulting in a lack of oxygen to the lungs due to compression if he bends, compounding the already severe deficit of the heart plus low haemoglobin. Might be quicker to talk about what he doesn’t have in the heart department.
The other very interesting comments were about the report the cardiologist sent to Nada re the heart damage, which she describes as cardiomyopathy with global hypokinesis. The letter appeared very civil to us, but the way Bob interpreted it there was a strong undertone to it, even though we hadn’t indicated to Gemma any of the communication problems we have had. “Obviously, I would be interested to know your opinion about chemo related changes.” “I would be grateful if you could take this into consideration obviously with his future treatment” amongst other things. This without being told that Nada had denied chemo as a possible cause. Looking forward to hearing her response on Thursday, but will be unsurprised if it is totally ignored, at least to us.
On a more mundane level, I am trying to get some action on a dead tree branch which is leaning on the incoming power line to the house, the energy company’s tree people Asplundh came but can only do street trees unless authorised otherwise and tree people won’t do it as it is on the power line. I rang Endeavour Energy who said it is a safety issue and they are sending someone to look asap, but wouldn’t guarantee action. A conundrum.
My gardener John just came with a plate of coconut and raspberry cakes made by his wife Judy and seeing my John hates coconut I have the solitary task of eating them. Luckily I adore both raspberries and coconut. You can get lucky.
February 21, 2017
Three cheers for Endeavour Energy, hip hip hooray. Last night about 9pm I was conscious of a man in the front garden. I shot out to investigate and discovered an Endeavour man making short work of the errant branch on my power line. I don’t even know how he got it down, but it was already on the ground and he was preparing to leave, saying that it had been a safety issue so they dealt with it immediately. I didn’t tell him it was like that for the last three weeks. Relieved.
Today I struck lucky again. Went to Macquarie University Hearing Hub (where they train audiologists) for hearing tests. Had extensive tests and then he asked why I don’t want hearing aids. I said: 1. I don’t want to find I don’t like them and they sit in a drawer like so many other people I know. 2. I am not sure if they will help as some people say the sound is just louder but not clearer. 3. It is a big financial outlay. Then he came up with an offer I couldn’t refuse: I get the hearing aids for a 1 month trial, plus three appointments to learn how to use them and iron out any problems and at the end I decide to either keep them or give them back and the cost will be ………………….. nix, nothing, zip. Can’t argue with that I said and the deal was done, I pick them up in three weeks. John was all smiles, “I will be able to talk to you from another room now” he said.
Getting back into the swing of things at home with three loads of holiday washing done. Made vanilla icecream and a sultana madeira cake, plus a great Jamie Oliver dish for dinner, barramundi on top of a garlicky tomatoey anchovy-rich green bean stew. Yummo.
February 22, 2017
My project today was to make Millie’s birthday cake but it wasn’t all smooth sailing. I chose a chocolate mud cake which I hadn’t made before and because I wanted the top flat to ice, it rose like Vesuvius with crevasses you could abseil into. So now I have two choices, cut the top off and reduce its depth considerably or start again. I guess I could also ice it as a spinning top, seeing that is its current shape. Will decide on that tomorrow after I remove it from the tin. John says he could Spakfilla the craters but I am dubious.
My local cake decorating shop is having a demo night next week for $10 a head, redeemable for $10 worth of goods instore, can’t argue with that so I will go along I think.
We then went to see the 5 star movie “Tony Erdmann”, a German film nominated for the Oscars. Just about 10 of us in the cinema which is how we like it. Well it had its moments but I would give it half of that score I’m afraid. Had dinner later at Minskys pub opposite the Orpheum cinema as we are staying at John’s tonight for Nada tomorrow.
February 23, 2017
Well, no surprises today. Nada said she didn’t think the chemo has caused John’s cardiomyopathy, she said there is less than a 1% chance that it has, so she doesn’t accept the cardiologist’s opinion basically. In the end what matters more is whether or not it is permanent, but still the disagreement rankles. Nada said when asked this question that she didn’t know, as she doesn’t know what the cause was. We will ask Gemma that question in May and hopefully get an answer.
We visited Charlie in St Vincents and it was well timed as I was able to feed him his lunch. He will be moved to a nursing home in Waverley tomorrow, but it is 2 months now since his accident and he has only improved enough to sit up, to speak and to eat if fed. No mobility at all and unable to self feed, I hope the nursing is adequate where he is going.
I managed to level ‘the cake’ quite well, without losing too much height. I will attack the decoration tomorrow. Baked ‘3 Chocolate Brownies’ for book group, not 3 individual brownies, but 3 types of chocolate, dark, white and cocoa.
February 24, 2017
Attacked Millie’s cake decoration first thing but hit a snag, the dark chocolate cake underneath made the white icing look grey, so I had to apply another coat over the top to get it Persil white. Got it decorated with no problems after that and pretty pleased with the result.
Picked up Michelle for book group in the evening, everyone enjoyed the book My Brilliant Friend and the food, drink and hospitality were great as always. It made me sad to see all the men go off for their dinner while John wouldn’t even be able to cope with the walk up the driveway. I can only hope that time gives him more energy and puff, though he is quite happy just doing what he is able to do, so I should be as accepting as he is I suppose.
February 25, 2017
Took me an hour and a half to drive to Dav’s for Millie’s party, Sydney traffic is getting too bad for words. Due to rain the venue was changed to their unit instead of the park, but it made for an easy and comfortable party. Millie was given such beautiful clothes and books she will be a very stylish and well read little girl. A funny moment was when she had her first ever taste of cake (and loved it), later when her mum got up off the floor to do something, Millie crawled over, grabbed Dav’s piece of birthday cake and devoured that too.
Had a call from the auctioneer David Barsby thanking me for recommending him to handle the estate of Brian Jones, the Windsor artist, florist, antique collector and man of many parts. David told of his amazement as he opened up Brian’s cabinets, full of fleets of Waterford Crystal, sterling silver and early and rare porcelain. Not to mention the Georgian furniture and art. It all seems another world to me now sadly, but I am glad the family accepted my recommendation as he is an honest auctioneer and a nice man to boot.
February 26, 2017
A trip up to Castle Hill Library saved the day when I suddenly realised I didn’t have a new novel to start. Not having non-fiction is a shame but not having a novel is a disaster. Got four books from my long list of ‘must reads’ so it was a very successful trip.
Went to Carol’s fund-raising dinner to support the family, currently in a camp in Quetta, of an Afghani refugee to Australia. About 70 people turned up to be served wonderful finger food and wine on the deck and to join in some singing as well. Lots of friends there, good to catch up with them all.
When I got home there were numerous missed calls on my mobile from Davina and Carly. I rang straight away and found that Millie had had a seizure and been taken to hospital this afternoon. She had a cold yesterday and apparently it was worse today and she had a febrile fit, which isn’t dangerous, but is very scary. The ambos decided to take her in for observation. That poor baby can’t win a trick in the health department lately. Naturally her parents are upset, but it all seems ok now.
February 27, 2017
John and Kev went for a drive up to Killcare today to get the lowdown on Sue and Robert’s house. They leave for Antarctica on Sunday and have offered us a holiday in their cliff-top home overlooking the sea. This was a techno briefing to find out how the place works. I don’t need to know but will be happy to be the beneficiary of the information. We are very spoiled coming on top of a week in beautiful Gerringong.
I took the bus into town to go to the Medich trial and ha ha, one juryman was sick so it was called off. I crossed the road to the Law Courts to attend the Gordon Wood case instead, he is suing the government for wrongful imprisonment after being gaoled for murdering his girlfriend. I literally could not hear a word of it, so after half an hour of wanting to scream ‘speak up’ I left, but discovered that there is an assisted hearing service available which I will partake of next time. But by then the new hearing aids will have arrived. It occurs to me that watching court proceedings is like seeing a novelist develop a fascinating character with so many shades of light and darkness, but this is shown in court in real life. Lucky Gattelari is a classic case in point, such an amenable helpful fellow in court, dare I say charming, yet with the morals of a sewer rat.
Sadly I am unable to go near Millie when she is ill for fear of bringing it home to John after successfully preventing infection since last September when he got sick. She has an ear infection on top of her cold and is on antibiotics again. Not much of a grandma at the moment but I am caught really.
February 28, 2017
Feeling off last night and today but nothing that can’t be helped with my usual drugs and some patience. Bob goes to Japan tomorrow so I will need to muddle through for 3 weeks if it gets worse. Too complicated to explain all the ins and outs and drug interactions to a new doctor. My next visit to the Prof is during the time we will be at Killcare next month, so it won’t need the usual day trip to Gosford, just an easy drive.
I was able to sort out my enrolment in the First Aid and CPR Course for next month, which had been problematic due to computer problems at their end. There is 8 hours of study and a workbook to be filled in, then an 8 hour prac course.
Martha came for an early dinner, I did fish on a green bean and tomato stew, followed by a chocolate brownie as we were going to a cake decoration demo at Cake Decorating Central. It cost us $10 each and we got a $10 discount each on any supplies, so I bought a silicone macaron mould and some coloured cake sprinkles of various types with no artificial colourings in them. Certainly a worthwhile night, even though some of the techniques I doubt I will use, but others I will have a go at.
March 1, 2017
We went on a mission this morning as John has been wanting to do some architectural photography and today was the day. Stopped at Terry and Jude’s on the way to see their nearly finished new kitchen which John designed early last year. They had a huge wait for the installer, but it is finally coming together. I thought at first that Jude had bopped Terry on the forehead but it was ash for Ash Wednesday.
We spent all day on the project but made a big mistake leaving at 4pm and it took us two full hours in rotten traffic to get home from the southern suburbs. We should have stayed out for dinner and breezed home later. John needed to go up a ramp at one stage and couldn’t make it, I was able to complete that task, but it shows his breathlessness isn’t improving despite the new drug.
Had a good long talk to Steve later, but had to ask him to repeat things frequently and guessed what he was saying a few times in between. My ears are crap, old age is crap, until you spent some time contemplating the alternative that is.
March 2, 2017
Not feeling well again so all my goodly plans for the day have fallen in a heap. John went to Lane Cove this arv as he is keen to get his new printer set up there, it has been here in use since he bought it months ago. He will ask Anne to help him get it upstairs from the car. Trying to motivate myself to get some jobs done, there are plenty here to do, but it isn’t happening. I use cooking or reading as a reward for getting boring things done, but even the normally enticing thought of making some macarons for the first time hasn’t worked, though the ingredients are sitting there happily waiting for me to start.
Spoke to two mechanics today re my long-standing car oil leak, which I have been told previously is underneath the motor and would cost more than the car is worth to fix. It has now increased dramatically and I’ve used 5 litres in under 2 weeks. First mechanic: if the leak is under the motor, trade the car in for parts and get a new one. Second mechanic: unless you can buy a brand new car, get it fixed, otherwise you are buying someone else’s problems. So what to do? First I need to be 100% sure it is the same leak, so I will take it to mechanic two on Monday. As Joan Baez used to say ‘Some days are diamonds and some days are rust’.
March 3, 2017
Huzzah!!! I am back in the world of the well and everything looks different. But the last week has reinforced the fact that I need to talk to the Prof about a few things when I see him on the 16th. It ends up almost being a social call sometimes as I like him a lot and we spend time talking about non-medical matters a fair bit.
Went over to Martha’s to go through my chapter in her upcoming book When I Was Ten. It brought back many memories as I hadn’t looked over it critically for quite a few years, back when she interviewed me for the chapter initially. We are considering doing cake decorating classes for a couple of months, starting on May 1 at Hornsby, after our first foray last week.
Kenneth rang and asked when he would see me next, I was unable to even guess. A trip to England seems as easy as one to the moon right now. I am so torn, wanting to see him yet wanting and needing to be here with John, please don’t let anything happen to either of them. To whom this request is being made I have no idea, but I hope whoever is in charge reads this blog.
March 4, 2017
Lovely wet day, so happy to be pottering. John was pottering alongside so all good. Had Jenny and Chris from Narromine along with Rachel, John and Jack for dinner. Everyone seemed happy with the food, a slow roasted leg of lamb cooked with butter beans and tomatoes, along with vegies. Followed this with the mango, lychee, icecream and lychee granita dessert that I made at Christmas. Somehow the food wasn’t quite up to scratch for me, lamb cooked all day yet not falling off the bone and the icecream seemed to melt a bit too quickly into the fruit, perhaps because it was home made and that made a difference. Anyway it was all eaten happily, so I can’t ask for more than that.
March 5, 2017
Went early to Rachel and John’s house for brunch with Jenny and Chris and a good proportion of the Geraghtys, 11 adults and 3 kids I think. Wonderful spread of eggs, bacon, smoked salmon, feta cheese, baked tomatoes on the vine, roasted potatoes and guacamole, served with champagne of course. Loved their newly landscaped garden with sandstone steps and pillars. Later we had a beautiful mango cake with tea and coffee.
Stayed there till 3pm and visited Martha on the way home to deliver photos for our chapters in When I Was Ten. Now we have to sum up our lives since the age of 10 in 100 words, that’s less 2 words per year! I left the portrait photo of my mother with her, the only time, bar holidays, that it has been out of my possession since 1950 when she posted it to me.
March 6, 2017
We were up at the new mechanic’s workshop at 8am. He promised to look into the oil leaks and phone me later in the day. Then we set off again on John’s photography expedition and spent most of the day on that. He has it complete now and is happy with it. The mechanic rang to say that I need a new oil pump, which is leaking badly, as well as a sump leak and a timing chain leak and and and……………… He wanted me to physically see the leaks so we ended up back there under the hoist with me saying ‘ooh’ and ‘yes, I see’, when in reality I couldn’t see much at all. The bottom line is it will cost $2200 as the motor needs pulling out to do it. The other alternative is to buy another car and that will cost me a lot more, but really I don’t have the mental space to contemplate a new car right now. New? Secondhand? Auction? Private? Dealer? Brand? Model? Sedan? Wagon? No, just fix the bloody thing thanks, I can’t be arsed.
Buggared after all that, we bought takeaway sushi for lunch at 4pm and John has crashed. I am now planning lunch for tomorrow, some of his clerical mates meet at a ghastly club once a month, but John isn’t up to the place so for the moment they come here. I like to do a hot lunch for them and a sweet to follow. They all drink beer at the club but here they all go for wine, funny. I keep well out of the discussion, not because I am uninterested, but I think it is really about them commiserating regarding how awful the church was/is and how badly they were treated, so I serve and leave them to it.
March 7, 2017
Made a moussaka and salad for ‘the boys’ for lunch and topped a cinnamon cake with sliced plums, grapes and raspberries before baking as a dessert. One of John’s ex-priest friends made the point just recently that they were given a wonderful education in the seminary, wonderful if you were a priest in mediaeval times that is, he said.
Got a phone call last night from a friend in rural Victoria to say that her husband had died unexpectedly from an aortic aneurysm. JanBert and I knew each other from when he was a PhD student in Agriculture and I was working at Sydney Uni in the 60s and 70s. We hit it off immediately and spent a fair bit of time together eating out, looking at old houses and going to antique shops, well before I owned one. It is sobering to think that John and I had discussed a trip to Horsham to visit them just after I closed the shop but before he got sick, without even a thought that it would never happen.
March 8, 2017
Funny old day. We set off in John’s car (as mine is in the mechanic’s) to go to Windsor Library about 10am and he complained of the steering being stiff. By the time we were just outside Windsor the car was boiling so we pulled into Bunnings carpark and called the NRMA. The man took till 1.30 to arrive but picked up that the alternator belt had gone and sent John to the Repco shop across the carpark for a new one, saying it was very unlikely to be in stock for that model and that we would then need a tow. Our luck was in and he came back with the beast, which was fitted by our pal and our trip ended at 3pm back home. Could have been a lot worse.
This brought to mind the old NRMA where the servicemen came in half an hour, before Nicholas Whitlam (aka Nick the Prick) conned the members into demutualising it. Paid off with a handful of shares, the stupid members fell for it and service slid almost immediately. Don’t get me started on how he had the wonderful Art Deco marble board room at the State Bank jack-hammered and replaced with a boring modern décor. I wish I hadn’t started down this track, now I am angry all over again.
March 9, 2017
Actually did some gardening in the front, pulling out fishbone fern which was dead easy after the rain, filled a Sulo bin and felt virtuous. Had an appointment in the afternoon with Dr Myers to check my eye after the recent flashing lights incident. Took a long time, lots of tests and the result was he doesn’t think the vitreous humour has finished detaching yet, so I have to go back again in 3 weeks. Grrr, good that it is looking ok but I hope it won’t cost another $270, very little of it claimable, miserable impecunious old pensioner that I am.
Was all spruced to go to Martha and Phil’s for dinner when I got yet another pain in the chest, which I have been getting increasingly of late. We went anyway, but I had to ask John to park in their street and wait half an hour in the hope it would recede. It lasted an hour and a half before disappearing as suddenly as it arrived. Felt bad arriving for dinner under par, but the experience has goaded me into action and I made a doc’s appointment for 9am tomorrow, just in case it is angina. Had a good evening once I felt ok again.
March 10, 2017
Well this is a turnup for the books! I am writing this in hospital, RNSH to be precise. I went to Dr Hay in Bob’s practice as he is in Japan. He said almost immediately that I needed to go to emergency and should have done so last night in fact, when I had the chest pain. He did an ECG which was normal but sent me off anyway. We stopped briefly to grab a bag ‘just in case’ and lucky that we did as I am now an inpatient after being in emergency all day. At 4pm the doc said I could go home till Monday and come back to see a cardiologist then, so I got dressed to go but when he tried to book the appointment the cardio said he wasn’t happy for me to go home today. Further enquires about when I will go home have been met with ‘when the cardiologist says so’. So here we are, I haven’t had a heart attack they’ve decided, perhaps unstable angina, who knows, but I need to stay here till they know for sure what’s going on. I told John that the gods were paying him back for the days I have sat here and at St. Vs, he says he is happy to return the favour.
March 11, 2017
I am in a 4 bed ward with 2 other women and a man, all very friendly but respectful of privacy and not too overpowering. I have the best bed in the ward, on the 6th floor with a view over the city and Darling Harbour, out to Anzac Bridge and beyond. Mine is the only bed with a direct view and a good outlook is all important at any time, but particularly here. I have discovered a sitting room at the end of the floor with an even better view which takes in the Harbour Bridge, so I spend a bit of time there reading. I can’t leave the floor to go to the cafe or newsagent in the foyer as my wireless heart monitor won’t transmit that far.
I had a visit mid-morning from Dr Choong, who was so lovely that I was reluctant to ask for a change to Gemma Figtree as I had intended. He said my ECG is on the border of normal and not normal, so he decided I need to be here in case I am ‘trying to have a heart attack’. He will do a CAT scan of the heart on Monday, plus an echo ultrasound, but not a stress test in case it ‘forces you into a heart attack’. Always glad to avoid any sweaty bike-riding, so good. If that all comes out sweet he will suggest where we go then. Lucky I went to the library on Wednesday, though I have knocked over one of the three books already, but the Herald, The Saturday Paper and The Monthly still await detailed attention.
John picked up my car from the mechanic this morning for $2470.73, gulp. The mechanic gave it a wash, bless him, though my policy is to wait for heavy rain, which we had recently so it should have been ok by my standards. Now I need 3 tiny collisions that are not my fault, one each to repair a ding on the back mudguard, the scratched driver’s door and a broken headlight glass, then the car will be fully swish.
I do not have wi-fi here so I am writing this as a document and John will publish it on my computer tonight, good to have a secretary. I will have a ton of emails waiting before I get out of here, I will really need a secretary then.
March 12, 2017
I have been told I have low potassium, not sure why, but a doctor woke me at 12.30 am to take blood so it must be somewhat important. Now on tablets to correct that, as well as all the usual ones and Clexane the blood thinner. Apart from that there is no medical news.
Loved breakfast of porridge followed by pancake and maple syrup. John had better lift his game in the breakfast department, none of the endless toast and jam from now on. He is breakfast chef and I do the other meals, cook rather than chef I should say he is, considering the limited menu, but now I am sure things will improve. He came to see me this morning then went to Baulko to clear out my fridge of prawns, veges, milk, lemon tart, cake etc which won’t keep. No point letting it waste, my pet hate. He is staying at Lane Cove for proximity to the hospital.
Dav, Louis and Millie came to visit, bringing a big box of home made fruit salad, enough that I was able to share with my fellow prisoners, plus some rose Turkish Delight (which I did not share) and a Baking Heaven magazine. I could quite get used to this, perhaps I will speak to the lovely Dr Choong about a longer stay, slipping him a quick fifty if necessary.
Tim rang, knowing I had been feeling unwell he had been ringing round hospitals to find me when I didn’t answer my home phone. He said he had taken his mother to the GP for chest pain on a Monday, was told it was nothing and she dropped dead of a heart attack on the Friday at 68. When he next saw the doc, he said ‘well she had MS, would you really have wanted to keep her going?’ Mmmm, I think the patient needs to have some input in that decision maybe, euthanasia is meant to be voluntary after all. Anyway I told John that if I fall off the twig, Martha gets my cake icing tools to do the course we planned, perhaps toss in the big bag of icing sugar as a bonus.
March 13, 2017
Last night I discovered what happens if you have a ‘cardiac event’ while on a monitor, which all of us are on in this ward. There was a massive ringing of sirens and the staff, as one, raced for a room down the hall. Then women in civvies came running followed by male doctors. No suspicious trolley went past during the evening, so my room mate Steven and I decided he or she had survived, though Steven suggested there may be a special lift for such cases. I surmised that perhaps it was more like a garbage chute direct to the mortuary where the unlucky are disposed of feet first, Steven and I then riffed on the design and use of such a thing and passed the evening happy. Sadly Steven has gone over to the private hospital today, so now I have no pal with a similar sense of humour.
Another big day. Up at 6am reading in the lounge, then off to Mohammed in the Cardiac Ultrasound Department where I had a very interesting, long ultrasound with Doppler, it was weird watching my heart valves working. My session took well over an hour, while in the adjoining booth two patients were done in about 15 minutes each. Seeing I was quite enjoying the pictures and occasional explanation, I am not complaining, but it did make me wonder why he did sooooo many photos and measurements, 200 would hardly be an exaggeration.
After lunch I had medication to slow my heart for a CT scan of the arteries but all for nought. The technician had problems getting the heart traces to work and despite numerous tries and some ‘test scans’ he said the machine wasn’t working and we needed to use another in a different room. Traipse in there, go through it all again, do ‘test scans’, before he said ‘I am aborting the session, we will try again tomorrow’. Umm, did I just get CT scanned for nothing I asked, yes was the reply but it can’t be helped. They also had to throw out 2 lots of radioactive medium that had been attached to my cannula but not infused. So, I asked, do you have to cancel everyone for the afternoon? No, he said other CTs of the heart don’t need the traces, yours is a complex one. So I pressed on, will a TV technician come tonight and fix it? (It was a Philips after all). Unamused and sullen, he said no, when I finish my workload I will ‘tinker with the machine and get it going’ !!! I don’t quite know what to make of all this, but not happy that I have been twice irradiated for nothing and will be again tomorrow. Perhaps I can entertain at children’s parties as the Glowing Woman?
March 14, 2017
Wow, where to start? Martha and Phil visited last night and it was great to see them, I have so many good friends. Up from 5am so I could be breakfasted and showered before the CT scan, then went into the first morning slot and quizzed Cameron from yesterday about the competency of the machine. Like everyone who works with radiation, he was blase about it and scoffed at the idea that I had had too much. But the machine worked ok until such time as they put in the radioactive contrast infusion and realised that it wasn’t flowing properly. Overnight the catheter had blocked up and the juice was going into my arm instead of into the vein. ‘What else can go wrong with this one?’, he asked his pal. They turned if off quick smart and called a doctor to put in a new catheter in the other arm, the fourth one. ‘Do we need to do a report?’ he asked an invisible colleague, who enquired how much had leaked, ‘only about 20ml’ said Cameron, and between the two they decided a report wasn’t necessary. ‘You will have a big bruise’ he said bandaging it up with an icepack. Radi-o-active is all I have to say.
From then things went smoothly and the scan was completed, during which time a strange but not unpleasant warmth suffused me from top to toes as expected. I bid Cameron goodbye and they wheeled me back in a bed rather than the usual wheelchair. I soon found out why when I got a decent headache and became nauseous and dizzy. Back in 6D a doctor was called and he prescribed Panadol, telling me that those three symptoms are common after this test, but many people get none at all. The rest of the day was spent in bed, with dearest John holding my hand, feeling very under-par, but late in the afternoon the doc came back with good news. My heart is ‘good for my age’ (no doubt from a lifetime of rich sweets and an aversion to exercise) but I have a hernia in the diaphragm through which part of my stomach has extruded, hence the pain. John asked ‘does this mean surgery?’ to which he replied ‘it can be done but it is rarely successful’. He suggests I see a gastroenterologist for further drug management, but no rush. Now home, wanting an early night and to wake up well. Goodbye Steven in bed 5, goodbye lovely Armenian lady in bed 7 who farewelled me to the CT scan today with ‘my god goes with you’. I am blessed by beautiful people wherever I go.
March 15, 2017
This blog is called Lymph Notes but it has turned into Hospital Notes these last five days. John is well but still suffering from his weak heart, which makes walking on even a mild slope difficult. Today he drove me to the local doc who put me in hospital last week and I got a referral to a gastro specialist in April. No surgery I intend to say.
Left for Killcare mid afternoon, only 3 days later than planned, and discovered we had come without the keys to Robert and Sue’s cliff top home. Forlorn at the prospect of returning home, John rang Kev and worked out a very easy Plan B, so we were saved that long drive. Made a dinner of barramundi with wasabi cream sauce, mash and broccoli and even risked a half glass of wine. It will probably rain the whole time we are here, but we care not a jot.
March 16, 2017
Lovely wet day looking out over the ocean. Had a luxurious hot breakfast and then headed out to Gosford to see Prof Glenn Reeves. He was his usual knowledgeable, caring, funny, obliging self and suggested a few tweaks to the medication regime and added another test for the gastro to do, for ‘silent coeliac disease’. Lordy, all I need is to be forced onto a gluten-free diet on top of everything else right now. Glenn just loves writing to any other doctor I ever see, even the eye doctor and my dentist! Now he has written to the gastro before I’ve even seen him, which seems slightly embarrassing somehow, sort of like your mother asking for special treatment for you in advance. On a brighter note, I went to my favourite second hand clothing store, Rhonda’s Boutique, which has heaps of once-worn clothes from fashion parades. I got four pairs of jeans for a total of $57, two with brand new tags on them with high prices. Also got two lovely blouses for $46. Lurve that little shop which I go to each six months when I see Prof Reeves at Gosford.
Met Deborah and Steve just off the train and they did some (a heap) of grocery shopping while I was in the doc’s. Headed out to Killcare and after a scrappy lunch, a very scrappy one in retrospect to be giving arriving visitors, we walked down to Marie Byles Lookout just down the road, a walk John could manage well. On a clear day you can see Bondi Junction and North Head, but not today. Deborah cooked a roast lamb dinner which was just the ticket. Spent a relaxing evening catching up.
March 17, 2017
Quite misty and occasionally raining, but lovely views all the same. Had a lazy breakfast, then took a short drive to Hardys Bay, Pretty Beach and Wagstaffe, then drove up to McMasters Beach, unusual in that the place is divided by a lagoon and it is called Copacabana on the other side, but the two have no road connection, though on the same beach. All the beaches are closed today. Home for a fridge raid of salads for lunch. Later in the day Deborah, Steve and I went into Bouddi National Park, the entrance is just up the road, and walked to the end of the Bullimah Spur with great views over the teaming ocean, it was blowing a gale. We scrambled up the cliff to the house as the track passes right beneath it. Steve and John are happily ensconsed watching the football.
March 18, 2017
Lazy morning before driving Stephen and Deborah down to the bus stop. I am so glad they decided to stay an extra night as we don’t get to see them often. Still alternately pouring and fine, though constantly windy, absolutely gale force during the night, yet the house was quiet and felt safe. We did a little shopping in the tiny village centre of half a dozen shops, two of which are real estate agents and one a hairdresser. I read the menu at Yum Yum restaurant, it sounded yum yum to me, but perhaps a bit too shellfishy for John to get excited. I have picked what I am having just in case he suddenly decides he wants to go, tempura oysters followed by twice-baked cheese soufflé, one of my faves
Filled in part of my First Aid Course workbook on the computer for most of the afternoon. The content is not a problem but remembering it all for the exam on Thursday might be. What was the treatment for a box jellyfish sting again?? John spent his time working alongside on his computer. Made salmon fishcakes, greens and coleslaw for dinner with half a lemon meringue tart from the local patisserie for afters. Top notch.
March 19, 2017
Off to The Fat Goose, which I keep calling The Loose Goose, to pick up two loaves of wonderful La Tartine organic bread. The place was packed and buzzing before 9am. Avocado on rye and 7 grains toast for breakie at home, then a trip down to Putty Beach to have a stroll on the wooden walkway along the edge of the ocean in the Bouddi National Park. We went with no money and discovered there was an $8 charge to park, so we drove back to the house and got our $8, but then discovered that the machine doesn’t take notes. So there we were begging for change in the carpark till a man offered to pay the money on his card for us and we gave him the 8 bucks.
John couldn’t manage the stairs up to the walkway so he sat on the rocks while I did part of the walk to Bullimah Beach, straight under the lookout we walked to yesterday. I would love to do the full walk round to Maitland Bay. If the weather is fine tomorrow I might swim at Putty Beach, which is more protected and a bit safer. Took a drive to Wamberal to visit John’s cousin Anne Perry and then on to visit friends David and Jill Simpson on their acreage just up the road. Dinner of leftovers completed our day and I spent time studying my first aid manual.
March 20, 2017
Had a swim first thing at Killcare Beach and then came home for brunch. The water was beautiful, but the waves were going every which way, making it like a washing machine. John found it a bit exhausting but enjoyed the swim for a short while, while I ended up sitting down and just letting the water wash over me after a while as there was quite a sandbar there. He had a rest after the swim but later in the afternoon we took a drive to Copacabana to check out Cockrone Lagoon which is mostly cut off from the ocean but occasionally a big storm opens it, often killing the animals which are accustomed to fresh water.
Sadly this is our last day here, tomorrow we head home to our usual routine, but we have loved the break. We haven’t gone out a lot or eaten out at all, but that was a choice that we were happy with.
March 21, 2017
Simple jambo toast so we can head off asap. Packed up all our stuff and attempted to reverse entropy and to leave the house as good as it looked when we arrived. The landscaper arrived to continue work on a dry stone wall he is building. When we got home John called the NRMA for his car which had boiled before we went away, the result was it is now in the same mechanic’s as mine was last week, needing a radiator repair/ replacement.
Went to movie group at Roseville, eight of us were there tonight. We ate early at the Lebanese place El Karim, sharing a dip and a main, excellent as usual. Saw ‘Alone in Berlin’ and I rated it jokingly at 3.75, though others gave it up to 4.5. A reminder of the courage it takes to defy totalitarianism in even the smallest ways. We went to Salt Pepper Nutmeg afterwards, a place where they don’t know how to make a bad meal, to toss around our opinions of the movie, some of our group having dinner there and others a dessert or coffee. Good to see everyone enjoying themselves.
March 22, 2017
Down to Macquarie Hearing Hub to have my new hearing aids fitted. Andrew had two students helping and it was really all about their technical deliberations, I just sat and said yes or no as asked. It all seemed pretty simple and I go back in two weeks to discuss any problems I may have. The world is very loud I’ve discovered. Not only speaking, but shoes on the floor, birds, car noises I didn’t remember, plastic bags crunching, rain falling and my goodness the exhaust fan on my stove is almost too loud to believe, sounds like being in the engine room of the Queen Mary.
Spent some time in the late afternoon on my first aid manual for tomorrow, realising that acronyms don’t help if you can’t remember what the letters stand for. Took a break and made a glace cherry cake, during which time the phone line went down due to a storm, no blackout but no phone, burglar alarm, or internet. Sooo, it is now after 11pm, it is still down and I haven’t been able to go back to my manual which is all online. I love paper, if it were on paper I could be studying it now, as it is I will fail and it won’t be because the dog ate my homework, but that the internet ate my manual. Do you treat a drug overdose with vinegar, a sweet lolly or a bandage? The pass level is 90%, I will be lucky to get 50% I think. It’s CPR for a broken leg, I’m sure I’ve got that one right.
March 23, 2017
Getting the 7.10am bus to town does not equate to my usual morning routine, evening person that I am. But the first aid course progressed pretty well. Why do I always stress that I will fail miserably at anything new and then end up doing much better than expected? I don’t have my results yet of course, they will come by email, but I am feeling pretty positive. I even remembered how to treat an irukandji sting or what to do if someone is stung by a stone fish or a stingray, vale poor old Steve Irwin, apparently he shouldn’t have pulled out the barb, but seeing it went into his heart I doubt it would have made a difference. In the CPR and Defibrillator section the trainer only made one comment on my 8 minutes each of adult and child CPR and defib (I use the lingo now) and that was “excellent technique Maureen”. I take that as a pass and shake my head at my anxiety of last night.
Finished in time to meet Davina at Millie’s childcare at 5.15, the playground overlooks the QVB, to pick up the little sausage at the end of her day. It looks a lovely small place with a high ratio of workers to children, just 8 kids in her group.
March 24, 2017
Ha! Just got the email, I nailed First Aid and CPR. Now I shall pack my folding chair and a book and sit at a busy intersection waiting for victims, ahem I mean casualties. Ready for the blue ring octopus any time he wants to invade Baulkham Hills.
Went with Brigitte to her famed German bread and deli shop, Brot und Wurst, at North Narrabeen. We got lost as a nearby landmark had been pulled down, so she rang Telstra who assured her twice that here is no such listing in the Sydney phone book, and yes she did spell it out. Finally found it by chance and we lunched there, then bought up on such things as dark rye bread with pumpkin seeds and gold strength gelatine sheets (which are often mentioned in recipes but are not easily found). The return home was startling, two hours from Narrabeen at 2.30 to Baulko at 4.30. Sydney traffic is getting so bad that on Friday afternoons you need to leave the coastal suburbs by 1.30 to get home in any reasonable time and Saturdays are not much better. Good day out though, we will go again.
March 26, 2017
John has decamped to Lane Cove for the day to continue setting up his fandangle new printer before the mooted visit by a computer tech to help him iron out the changes to his system. Family is in Canberra so this left me a day to tick some things off my long ‘to do’ list. Hand washing done, tick. House insurance adjusted and paid, tick. Centrelink assets recalibrated, tick. (I wish they were as efficient with me as I am with them, my new calculations will cost me $12 a fortnight in pension, but I can sleep at night). Banana and walnut cake baked, tick. Blue cheese biscuits made, tick. Icecream made, tick. Gifts for daughters’ birthdays organised, tick. Phone calls to neglected friends made, tick. Guilt for the Day, realising late in the day that the March in March was on today and I didn’t go, oops. No points for good intentions.
March 27, 2017
Up until now I have shown restraint in not commenting on John’s lack of any communication from his daughters since he got sick last September, or in the years prior to that in effect. But forebearance has its limits. Yesterday John got an abusive email from one of them, who has previously demanded no more contact, ever. It was a missive asking, no demanding, that he write his will in their favour and ‘be kind to your blood relations’. It used phrases like ‘we would appreciate a smooth transition’, ‘this will be your last opportunity’, ‘please do not delay’ and ‘demonstrate swift action’ so they obviously think he hasn’t got long. Clearly the penny has dropped that appalling behaviour may perhaps result in consequences. I am so gobsmacked I am not sure whether to laugh or cry. John has chosen to ignore, but it is an unforgiveable smack in the face for him in this already fraught and stressful week when he finds out if his chemo has worked or not, the timing is exquisite. I told him to live to 100 and leave them only debts and I sincerely hope he will.
March 27, 2017
Took my car back to the mechanic early for a small residual oil leak after he did a job on the motor replacing many of the gaskets, this shouldn’t cost me anything hopefully. Braved Centrelink on the way home over an issue that has lagged since early November and hasn’t been resolved. The kind staff threw up their hands again and organised a call to my mobile with a manager who could deal with it. I waited 10 mins in the office, came home with phone still held aloft, then waited 50 mins more with the phone on speaker………and lo and behold a person answered, in Tasmania. She didn’t attempt to explain the delay of months but after many questions said ‘I am going to resolve this right now while you are on the phone’ and did so. Hurrah! Now I don’t need to check the mail anxiously every day, nor look at my emails for a reply to messages sent last year. The staff are fine, it is the 5000 job losses there due to Tony Abbott (hawk, spit) that are the problem.
We had a celebratory pot of Russian Caravan with our favourite cups and some glace cherry cake to celebrate the win. John is determined not to give in to the harassment he has suffered and has been quite perky today. A good long talk with Steve and Deborah helped him I think and I had a couple of calls from Michelle. As I started writing this John said ‘I am going for a walk up to the main road, so don’t worry about me’, the first time he has gone for a walk from here in 6 months. Now he is home and sitting on the back verandah admiring the stars. Things are starting to look up with him I think and not before time. Robert rang tonight and we had a long talk, will catch up with Sue soon, glad they are safely home from the wilds of Antarctica.
March 28, 2017
Had visits from Michelle and then Robert (now nicknamed Shack) this arv, then we tootled off to North Manly to my hairdresser Martin, I know, I know, but he is such a great cutter and he makes me laugh with his Scottish brogue. Went for a walk along the beachfront, John’s idea, he really is improving, two walks in two days. To celebrate the good news we are expecting this week we had dinner at Garfish at Manly, Whole Wood-fired Trout, Beurre blanc, Mash and Spinach for Sir and Swordfish with a Beetroot, Walnut and Fennel Slaw for Madam. Gorgeous food as always there. Eating out will be cheaper now that I need to have small helpings, but I will enjoy finding tasty entrees or small mains.
March 29, 2017
Left John’s at 7.15 to get to St. Vincents on time for his PET scan. Unusual prep for this one, keep warm and don’t do any exercise for 24 hours beforehand. Yeah, I could handle that instruction no problems. We will get Nada’s report on the tests tomorrow. I have my fingers, toes and eyes crossed. The whole thing took two hours and I waited in The Kinghorn Cancer Centre down the road reading the book for Friday night’s meeting as I wasn’t allowed in to the prep room with John. The ambience is so much nicer there than at St. Vs.
Asked about volunteering in the centre and was told to ring Nelune Rajapakse, who is the founder of the Nelune Foundation, where all the chemotherapy is done, and the principal fundraiser, she has raised $18 million over the last 16 years. Apparently one needs to go to the top to volunteer, which seems a bit odd, I would have thought they’d have lackies to deal with that sort of enquiry. Perhaps they thought I was volunteering money, ha ha. Coincidentally I got my approval through tonight to work with Hawkesbury Helping Hands, looking after the homeless and underprivileged in Windsor.
March 30, 2017
Happy Birthday to my darling daughters! Thirty-something years young.
We went to Kinghorn early for John’s blood tests and while waiting I had a chat with a priest, there on his own to see a doctor. He wanted to talk and volunteered that he had had his stomach taken out and can only eat tiny portions cut up very small and still has problems eating. It brought home what a lonely life these people have, no one to support you when you are ill and instead talking to strangers. When we saw him later he said ‘god go with you’ and I guess this is his support person.
Then we saw Nada! She was smiling from ear to ear so I knew the news was good immediately. She said John is IN REMISSION, not cured, but in remission, no trace of active cancer. She is going to apply to the PBS for him to keep on the rituximab part of his chemo treatment every 2 months for 2 years. Normally they only approve it for active cancer, but she feels he needs it as an insurance policy against it coming back, so she will put the case. If they refused and we were responsible for funding it, my research indicates it would be about $4500 PER DOSE, not that Nada has suggested this would be necessary. Here’s hoping it will be funded. We were going to have a celebratory lunch but the rain was torrential and we hadn’t brought a brolly, so I took John to Kinn, our excellent local Thai, for dinner instead. He celebrated with a lychee daiquiri mocktail and I with a champagne. We can breathe again.
March 31, 2017
My first words to John this morning were ‘hands up anyone who is in remission’ and he shot up his hand. There was a lot of silliness in the house today. He took me to the eye doctor this morning to check on my detached aqueous humour and as I expected it has finished pulling away, but with no retinal detachment, so I don’t need to go back. Good, as I find the doctor lacking in humour, he has had his humour detached, ha ha, boom tish.
Got a few messages from other volunteers at HHH, welcoming me aboard, which is embarrassing as I have done absolutely nothing so far and I am busy for at least the next 10 days so I won’t be doing anything till after that. A bit daunting when I see what cooking needs to be done, ie volunteers wanted for soup for 50, or roast chicken for 50, or dessert for 50, yikes, quantity has never been my forte. I remember once making a salmon loaf moulded in a butter dish when I lived alone, I am used to cooking for 2 or 4 or 6, but 50? Steep learning curve.
Had a good talk to Steve just before leaving for book group. I made Masala Carrot Cake cupcakes to take and made the mistake of telling John for simplicity that they were Indian cupcakes and when he tried one he wasn’t too keen, as he said they tasted like curry, which was a fault in my description more than in the recipe. Ground cloves, cinnamon and cardamom do not constitute a curry in my book. Had a good night at The Grail House, where Ruth and Alison live, everyone liked the book, A Fortunate Life, and found the author inspiring. John was able to go out for dinner with ‘the men’ now his immune system is stronger.
April 1, 2017
It is just after midnight so actually April 2, just got home after minding Millie while Dav and Louis went out for her birthday to have a 7 course degustation dinner at The Gantry on Pier 1, which they thought excellent. Millie stood up alone for the first time tonight while they were out, which was special to see, she knew she had done something clever.
I made Davina a birthday cake this morning, a Date and Almond Meringue Torte, three meringue layers baked with dates and almonds, sandwiched together with Cointreau flavoured cream and with a chocolate ganache on top. It sounds pretty good, but looked somewhat clumsy, John referred to it as an ‘ugly duckling of a cake’ with which I agreed. However the sparklers in the top looked purdy when lit.
Just had a comment on the blog from someone I don’t know who found it on Google, has been following it lately and wrote ‘Your positivity in the face of change inspires me to be a better person. Today reading John’s news, I did a little happy dance for you both’. I just did a little happy dance for you, whoever you are. You never know where the ripples land when you throw that little pebble.
April 2, 2017
My kitchen clock had stopped this morning, I think it got so confused about whether to go back or forward to adjust for daylight saving and after repeated attempts it gave up the ghost. John on the other hand says it is just the battery, however I like my story and am sticking to it.
I had a go at Turkish Delight today for the first time and it turned out a treat, but later became a bit wet and absorbed the icing sugar. Mr Google says it is syneresis, which can happen in high humidity or when it is refrigerated, apparently TD is a tricky little number to make. My New Year’s Resolutions included making preserves, confectionery and doing cake decorating this year.
Went to Carol and Jack’s for dinner and it was a lovely relaxed evening with their overseas visitor Priscilla from Belgium. We feasted on a whole baked stuffed pumpkin plus a Jamie Oliver vegetarian lasagne, Jamie never lets you down, his dishes are always full of flavour and he is a sweetie to boot. Carol did a date and coffee cake for dessert. John managed well, he really is improving.
April 3, 2017
Went to see the gastroenterologist this morning and I am booked for gastroscopy with biopsies of the oesophagus, stomach and duodenum on April 21. He wanted to do it this Friday which I was fine with, except we have visitors from Queensland coming for lunch and it would mess with their schedule too much to change it. He agreed wholeheartedly with the RNSH doctors’ views that surgery is a very unwise choice for this problem, phew.
I asked John his impressions of the doc and his replies were interesting. 1. He didn’t greet John until I belatedly introduced them, true, though one of his doctors had ignored me totally. 2. He thought his ‘presentation of self’ was offputting ie his fancy suit, fancy office with big leather chair, huge pseudo-antique wrap-around desk, fancy side table with world globe etc. It is true that he has gone upmarket since last I saw him three years ago when this problem first began, but he still does procedures for Medicare fees only, as does his anaesthetist, so his impressive décor doesn’t worry me too much. I do have concerns about the anaesthetic, ‘twilight anaesthesia’ is a euphemism that does not appeal to me at all, as I have read that it means ‘it may be awful but you won’t remember a thing’ due to the amnesiac properties of the drugs. Nightmarish thought to me, but I must bite the bullet.
Drove up to Windsor and visited Brian in the afternoon, helped him choose some photos to use in Martha’s book chapter on him and went to the library. Bumped into two clients which always feels awkward, as if I have done a runner with something of theirs, ie my shop.
April 4, 2017
Mad cooking morning, lunch for 8 for John’s ex-priest and priest friends who used to meet at a club every month but have met here since John became ill. Made a sort of Mexican beef and bean and corn dish (that I made up) with sides of olives, avocado, cheese, chili and pickled cucumber. Followed up with Masala Carrot Cake with cream cheese frosting.
By the time clearing up was finished it was almost time for Martha to arrive for our Cake Tribe class. I don’t think I will use the moulding and stamping techniques we learned but at least I know how to do it. Got the $20 fee back in goods, so chose a new cake tin, some cupcake baking cups and ingredients, a worthwhile exercise.
April 5, 2017
Decided I chose too small a cake tin last night so went up first thing to change it and they didn’t have the next size up. Rats, had to put it on order, the price of being a Libran. Picked up my 50,000 unit compounded Vitamin D tablets from the pharmacy for $60, ouch. Cost $103 all up with the other drugs I needed, drugs are costing me more than food some weeks. Prof Reeves says there is a strong link between low Vitamin D and autoimmune symptoms flaring so he gives me a megadose for a year at a time to keep the flares down, last time I got four months of greatly reduced symptoms out of it, so why not.
Went to John’s in the afternoon, he is at home working on a project on the computer and his tech helper was there from 7 last night to nearly 1 this morning. Luckily he had paid in advance at a set fee! We went to the Orpheum in the evening to see Denial, on tickets John won in a Historic Houses Trust lottery. It is the story of the famous London court case about Holocaust denial. Enjoyed it, Tom Wilkinson was very good and Timothy Spall was superb, as the hugely intelligent but slightly mad David Irving. It is informative, but somehow lacks passion, surprisingly so for one who delights in court goings-on.
April 6, 2017
It is 13 years today since I found my brother Kenneth in Halifax UK, after searching for relatives on and off since my 20s. I remember the day vividly, sitting as had become my Tuesday habit, at the microfiche in the basement of the State Library of NSW and finally discovering my father’s death certificate. I rang Britain’s BMD Registry in London as soon as I got home and pleaded with someone to send my father’s death certificate by airmail immediately ‘not tomorrow, right now’ and she did! There I found that the notifier of my father’s death was ‘Kenneth Raymond Doughty, son’ and so my brother was ‘born’ when I was 56. It was May before I tracked him down by ringing a few people with his name every evening, courtesy of British Telecom’s white pages on line. Eventually I found him and still can’t believe my luck. I soon got on a plane and we met at Manchester Airport, an unforgettable coming together of two people who bonded from their first conversation. “I want to go back and play on the beach with you and teach you how to make sandcastles” he said, tears streaming down his face. Love you big brother.
Cooked this morning for guests tomorrow, made an Upsidedown Pear, Almond and Maple Syrup Cake to be served warm with a Maple Syrup Sauce on the side. I want to cut a piece right now but I have already eaten more than I am allowed at dinner at the Royal Sydney Yacht Squadron, though I passed on dessert as by then it was getting late and I need to eat much earlier. It was an afternoon and evening farewell of 20 people for an old associate of John’s who is moving back to Canada after 48 years in Australia. Interesting crowd of people including Mick Mundine, long famous in the Redfern Block and uncle of the even more famous boxer Anthony. Got talking to Don Perlgut, who is a well known film and book reviewer and blogger, with more connections than I can remember, ex-ABC, ex-ASIC, prolific writer, the list goes on. Looking forward to reading his blog more now that I have met him in person (and liked him an awful lot). He saw Denial last night too and will be writing his review tomorrow, I await it with great interest.
April 7, 2017
Had a wonderful day entertaining my ex sister-in-law Merryl and her husband Mike from Toowoomba who were in Sydney on a road trip. It was our first face to face contact in over 25 years. We decided we will dispense with the ex and become sisters-in-law again as we were always very fond of one another and why should an ex-husband interfere with that?
Couldn’t get to sleep till 4am this morning so I am beat now, too much stimulation last night and too much thinking. But I woke up to this message today from my darling brother, only he of all the people I know would record an incoming phone conversation!
My wonderful bro rang tonight and all the reminiscences and ‘I love yous’ got a bit much and I ended up having a good howl. Probably did me the world of good, what a huge day.
April 8, 2017 (WordPress in their wisdom have deleted the underline option, dopey)
So, I have changed the title of this section of the blog and here is the reason. It was set up to record John’s illness and road to recovery, hence Lymph Notes, but we are back to our old lives again in many respects, so it is now Life Notes. Long may that title continue.
More communication with my sister-in-law last night reinforces both my pleasure in the value of our relationship and regret at the 25 + year hiatus in seeing each other. It was my fault that I assumed too quickly that because my marriage ended, I also had to end communication with my ex-husband’s sisters, feeling sure I would be unwelcome. Thanks to Facebook (and at their instigation) over the last couple of years I have got back in contact with the three of them and I am tickled pink about that.
Had my first shift at Hawkesbury’s Helping Hands tonight, just as a server, not cooking. We served around 30 patrons, aged from about 8 to about 60 with beef and vegetable soup, curried sausages and rice then pavlova with strawberries, kiwi fruit and pineapple, plus icecream and custard. I showed great restraint, the first time ever I have served up a pav without having at least two helpings, in fact I didn’t even dip my thumb into it ‘accidentally’. There were also loaves of bread and fruit and veges donated by Coles for take-homes for the patrons, so a pretty good service on what was apparently a quiet night.
April 9, 2017 (still shitting me that they’ve taken away the underline option and I have to use bold, grrrr)
I have been thinking about the HHH experience last night. There were lots of free fruits and veges there but very little was taken. I can understand the homeless folks not wanting them but many there would have homes, yet they opted for the bread, doughnuts or takeaways of the meal we served, but not the makings to cook with. The only exception was a sweet lady near as old as me who took leeks and spuds and said she was going to make a stew.
I turned on the TV at lunch time today (which I would never normally do) and immediately got the opening of the BBC’s Songs of Praise. I was about to turn it off when I realised it was Aled Jones in Halifax Minster, so I watched a bit and it turned out to be a doco of the Calderdale area around Halifax inbetween the songs. I had been to every place with the bro, Todmorden, Hebden Bridge, the moors and Halifax centre. Funny coincidence for it to be on this week, just after our 13th anniversary, so thanks Aled, love your work incidentally.
April 10, 2017
Minded Millie today as she has been sick since last week and Dav hadn’t been in to the office since last Tuesday, though she was working from home. She only had rusks and Hydrolite so won’t be putting on any weight this last week. We had a lovely day though, but by 4.15 I had run out of ideas and we watched cartoons on ABC Kids, I voted for ‘Postman Pat’, probably due to the northern England accents, but Millie seemed equally impressed with anything they cared to put on.
Travelling by train and bus makes me wonder why on earth we keep building new roads instead of new public transport, I suppose individualism always trumps community, in a nutshell.
April 11, 2017
Went up to the hardware to get paint swatches for Terry and Jude’s kitchen colour. I had recommended a couple of colours from the Dulux website, luckily they didn’t go with them, they were so wrong in real life, I won’t make the mistake of suggesting colours from a website again. Anyway I now have some nice samples of the colour that was in my head to show them later in the week.
The globe in my fridge died and one needs to remove every shelf to get the diffuser and globe out. So I emptied the fridge totally, raced up to Castle Hill to the lighting shop and …….they were out of stock. Grrr, raced home, washed all the interior and shelves and put everything back till next week. It is now clean enough to eat out of, hang on, I have been eating out of it, anyway it will look super once it gets a light inside. I’ll need sunglasses to open the door.
I have put my name down for the HHH Easter dinner on Sunday, looking forward to serving this special meal for the patrons, soup, a roast dinner, dessert and Easter eggs. Although I felt a bit odd last week, being the outsider, not knowing quite what to do and not really being told, I must just push forward and remember it is all about the clients, how I feel is irrelevant.
April 12, 2017
Started my day by making Simnel Cake as I do every Easter, the old English recipe is a light fruit cake with a thin central layer of marzipan baked into it, topped after cooking with another layer of marzipan and traditionally mounted with 11 balls of marzipan, one for each disciple bar Judas, but I have decided 2000+ years is too long to hold a grudge, so I decorated mine with 12 items this year. As might be inferred, I adore marzipan but sadly it often comes coated with chocolate these days.
Had a call from the gastro’s office to say the promised letter from Prof Reeves still hadn’t arrived and would I chase it up. Problematic, as it was written weeks ago and I have already rung his office about it twice before. ‘I have already told you I have emailed it’, she said last time. But I girded my loins and rang again. ‘I sent it again by fax after you rang last time’, she said grittily. But they didn’t get it I said meekly, could you try just once more? She didn’t quite say ‘you are a pest’ but it was close. But eureka, a call from the pleasant Angela from the gastro’s a few minutes later confirmed it had arrived, by both fax and email. Phew. It dents my theory that the best docs have the nicest receptionists, but this is just an exception to the rule.
So, the mongrels of Macquarie Street have succeeded in selling the Land Titles Office, a hugely profitable government service will now be in private hands. I despair of these people and their shortsightedness. I may have forgiven Judas, but I won’t forgive them as they count their 30 pieces of silver.
April 13, 2007
Left early for a trip to Jude and Terry’s house in Rockdale, it took well over an hour from John’s place to get there, but always worth the drive to spend time with them. Terry was all fired up because he had met a steeplejack working on the local church. I think we are very alike, we get excited over similar things, we both need to give minutely detailed explanations and our inability to make small decisions is legendary in both families. Both Librans if that means anything. Had a lovely morning tea, they have a bakery close so we had various Lebanese sweets and I took some of my Turkish Delight. They were very keen on the colour swatches and settled on Dulux Marsh Fog, a soft green with a touch of blue/grey, it should look super.
I did a last read over John’s project on the computer and picked up a few minor errors, so close to completion now. Headed home to have a 3.30 lunch and make some food decisions: dinner for Carly and her friend Fahad who will visit for a day over Easter and looking for a recipe for the apple sauce for 50 people for Sunday’s HHH service, I am starting with the simple cooking there and building up as my confidence improves!
April 14, 2017
Faaarrk! I feared the Medich murder trial would end with a hung jury and so it has come to pass. On the days I went I was unconvinced by Winston Terracini’s defence, but clearly a few of the jury were more impressed. So now we have four people who have been convicted for their parts in the murder, some with full confessions, yet the alleged mastermind has walked free, for now at least. Bearing in mind Medich was known by the nickname ‘Cottee’s’ after their sauce ‘Thick’n’Rich’, mastermind could be a generous epithet. One of the bumbling murderers burned his clothes afterwards with some of the money still in the pockets and sent a text straight after saying ‘job’s done’, they were a pretty hapless crew all round, but all as amoral as they come. UnLucky Gattelari must be livid. I will be queueing for a seat at the sequel if the DPP decides on a retrial, surely they must.
This morning I decided to go to the Maritime Museum and walked to the end of the street for the city bus, then along came one marked Royal Easter Show so I decided this must be a sign. I have never been on my own before, but it is to be recommended. I spent literally hours in the Arts and Crafts Pavilion, looking at every painting, every cake and piece of craft, marvelling at the incredible patience and talent of some items, but wondering why some were done at all. I found a painting, which had sold, by a friend and the First in the icing flower arrangements was won by the lady who taught the last Cake Tribe demo, so two personal connections as well. Add to this some woodchopping, a few dairy cows, the alpacas, the cat pavilion of course (I could have snaffled a few Birmans and Ragdolls happily) and a good stint in the food hall and the day was complete. I tramped back to the bus wrecked but happy, compliments to the government (did I really say that??) for the ease and efficiency of the transport, the bus was free and virtually door to door.
April 15, 2017
Spent a fair bit of the day listening to my Leonard Cohen 3 CD set and preparing for Carly and Fahad’s visit. They did the Bondi to Coogee walk today and arrived early evening. We ate lamb, slow-cooked all day, with roast veges and a Raw Zucchini, Pea and Mint Salad, followed by Walnut Tart and Turkish Date Icecream. I forgot to serve the Simnel Cake, a Freudian slip perhaps, seeing it is my fave. Fahad, an aeronautical avionics engineer with Qantas, who did part of his training in the US, is an interesting and easy conversationalist and I think the evening went well.
Poor Millie is sick again with a double ear infection, now they can’t fly back from Queensland on Monday as planned, mega expensive to change the flights at Easter I’m guessing and means they can’t go back to work on Tuesday, so more time off.
April 16, 2017
Good to see John pottering around here now he is feeling better. I spent the morning making a big batch of apple sauce for HHH tonight, to go with the roast pork for Easter service. The mobile shower bus was there ‘Restoring dignity one hot shower at a time’ and it was used by some men, women and children alike. It all went smoothly apart from a fellow getting hot under the collar when the food was a little behind schedule. His complaint was peppered with some very cross language but he settled when promised a big second helping. It is hard to guess at the circumstances of some of these people, ie a couple who drove up in a quite expensive 4WD vehicle who had the meal and used the shower service, but of course no questions are asked. One lady told me the brownies for dessert were too hard ‘a lot of us don’t have teeth you know’. Good to be home, thankful of my own teeth and hot shower.
April 17, 2017
Tootled off on the bus to the QVB and gave in to the desire for elevenses at Palace Tea Room there. John had a Devonshire Tea while I had one of the best Pavlovas ever, served with poached summer fruits, think rhubarb, plum etc, in a lovely pink syrup, spooned over the pav and cream. Good surroundings and service, lovely Wedgwood china, 29 types of tea, what’s not to like?
Got the bus up to the Art Gallery where we had a look at the ArtExpress exhibit, the work of 2016 HSC students. Amazing as usual, much better in fact than much of the New Australian Art exhibit, which we also had a look at. It is so restful going in on the bus, enjoyed the journey as well as the destination, but the pav won.
April 18, 2017
I feel exceedingly virtuous this evening as today I returned emails to two friends and a cousin, emailed my bro to ask if he will come over here for a visit, scrubbed the dirty marks off my front porch, cleaned out my handbag, got a new globe for my fridge and installed it, checked the oil on my car, picked up some globes and printer cartridges for John and both returned and borrowed from the library, not to mention researching dessert recipes for 50 people on the net. Whew, if Trump pushes North Korea into sending us a missile tonight at least I can say I was up to date with my chores when I was turned into a pillar of ash. Next week we might have Marine le Pen on top of everything else to worry about, the world is getting too scary by half, so attention to domestic trivia seems as good a pastime as any.
Managed to pick up the third in Elena Ferrante’s Neapolitan novel series today, along with Tom Keneally’s latest, Crimes of the Father. I will enjoy plunging back into that outer Naples village of the 60s, catching up with all the gossip and seeing whose business is thriving and whose marriage has problems. The author immerses you so deeply into the surroundings that you can ‘see’ the landscape and ‘know’ the characters strolling down the stradone, most struggling economically and carrying their fatalistic worldview on their shoulders, truly a wonderful series of books.
April 19, 2017
Davina flew back to Sydney from the Sunshine Coast today sans Millie, who is still too ill to fly. Louis may hopefully be able to bring her home tomorrow if her ear infections improve. Carly is in Melbourne supporting her Minister at a meeting, and I am happy not to be flying anywhere. I just love planes, as long as I am not on them, a bit like horses.
I had my final appointment at The Hearing Hub, which I can highly recommend, and am now the official owner of hearing aids as up to now they were on approval. A final test involved listening to 20 sentences played over a noisy background, today I could repeat 64% of them correctly without the hearing aids and 98% with them, a pretty convincing improvement. Then we went to lunch at The Tramshed in Glebe, an interesting restoration of the building, with many different places to eat. Had calls from the hospital admin re Friday’s procedure, as well as a call from the anaesthetist, who had just come back yesterday from a holiday in China and was very relaxed, chatty and approachable.
I had a light bulb moment today. If a government wanted to privatise Sydney Trains it would have a huge fight on its hands, but if it set up lots of smaller light and metro rail services it could pick them off like ducks on a wall, selling them singly as the political circumstances allowed. Is this their long term plan? I wouldn’t mind betting it is.
April 20, 2017
So, we are back to debating questions for the new Citizenship Quiz. Totally naïve to think that people would give their real views if they were in favour of genital mutilation or beating their wives, just for example. I have sent 10 suggested questions to our beloved Immigration Minister for his perusal, including ‘how many properties may a citizen negatively gear?’ and who said ‘People have a right to be bigots?’. I am leaving the computer on 24/7 as I’m sure he will want to take me up on at least a few, gosh the papers will all be on the phone too, I’ll be busy. I’m not charging him, by the way.
Trying to keep up a variety in the meals department and tonight it is a vegetable tarty quichy thing with cavolo nero, leek, zucchini, tomatoes and parmesan, but the correctly sized flan tin has disappeared, odd that a burglar would steal just that, but there you are. The hospital rang to tell me the time for my persecution, ahem I mean procedure, tomorrow. The doc has kindly made it first after lunch so I can have tea and toast for breaky, bless his cotton socks. I have bought trout for dinner tomorrow night and will leave out a simple but tasty new recipe for John, whether I will partake of it remains to be seen, but leftovers are highly prized in this house.
April 21, 2017
The morning went quite quickly despite a lack of food and more importantly, water. Baked Banana Bread to fill in the time and to get rid of the fruit fly hovering around the kitchen. Smooth transition from lady in civvies to patient in a fairly luxe environment, think marble counters in the admissions office. I commented on this to the admissions officer and he gave me the fascinating story, it wasn’t built as a hospital at all, but as the grand multi-storey offices of a pharmaceutical company, which went bankrupt………. I found this amazing, apparently when they (the co-operative of doctors) bought the building it was full, computers, counters, office furniture, even used coffee cups on the desks, perhaps it was a bargain if the company was in that sort of bother. It was then converted to a hospital and voila Hills Hospital for Specialist Surgery.
Anyway the gastroscopy went to plan with the lovely Pran and the lovely Edwin and later the doc gave me a print-out of the results, six problems found varying from oesophagitis (surprised I am not) to a gastric ulcer (surprised I am, as was he). Now I wait for 2 weeks to see him again for the results of numerous biopsies and then apparently go through it all again in 6-8 weeks, after medication, to see if the ulcer has healed. I’ve always joked that I could eat ground glass because I have such a strong stomach, but apparently no more. I am tempted to repeat Spike Milligan’s famous epitaph “I told you I was ill”.
John picked me up tonight and made a delicious meal of Baked Orange-Glazed Trout, filling the ‘light food only’ instruction to perfection. Thankyou darling.
April 22, 2017
Had a bit of a lay day today, which I frankly didn’t need, but we were both in sloth mode. Went to Rachel and John’s for dinner as long planned. The other couple present were both architects, but the man, Pen, had given up architecture after his practice failed in the financial crisis, to take up bush regeneration. Pen and John are both sons of diplomats who changed schools (and countries) frequently when young, so they had plenty to say. His wife Julia still works as an architect. It was a lovely evening with beautiful food and wine and the conversation was such that we all left at 1.30 am, and then only after I made numerous noises about the time.
April 23, 2017
A lazy morning, followed by a trip to the National Maritime Museum for the Pompeii exhibition. It was fascinating, even though I have spent a steaming hot day wandering Pompeii there is so much more to know. There was some focus on the rescue of some people by boat, organised by Pliny the Elder from the opposite side of the bay when he saw the eruption beginning. It cost him his life when he collapsed from the fumes, likely from asthma, though others with him survived. Seeing film of the body casts was sobering and an animated display of the eruption of Vesuvius from 8am on the day till the next morning gave an idea of how it all unfolded. We wandered around crowded Darling Harbour on a beautiful sunny afternoon. Wouldn’t be dead for quids.
April 24, 2017
The morning was swallowed by John’s doctor’s appointment, he was running an hour late, then John had to wait for a flu jab and before we knew it lunchtime had arrived, so lucky there was some leftover quiche in the fridge. While browsing the always appalling magazine selection at this surgery I found a real estate magazine with a full page ad for a man who tried years ago to make me believe he was selling two properties adjoining mine for townhouses and tried to brow-beat me when I wouldn’t play ball and list with him. It turned out he did the same thing with the other two owners who weren’t selling at all. I researched him on the net back then, as I had such bad vibes about his aggressive behaviour towards me in my house and discovered he had previously changed his name after being convicted of a murder! Now he is back it seems.
I finally got around to trying my new silicone macaron mat and while they are far from perfect, I think they will pass the eatability test. I refuse to dye them in neon colours, I can’t see the point of making beautiful food look like cheap lollies, despite the fact that Zumbo does it. Made an appointment to see the lovely Pran to get test results, geez between us we are trying to sink Medicare this last seven months.
April 25, 2017
AM: Anzac Day was always the worst day of the year in my shop, watching groups of drunken young men pass, going from pub to pub, noisy, senseless. I have never understood why we are so obsessed with celebrating war in this country, rather than doing all we can to prevent a repetition. I have never been to an Anzac March and never will, because by extolling the virtues of the fighting, even in totally unjustifiable wars, we are just softening up young people to accept the next battle, something that is cynically encouraged by governments of all persuasions. I want none of it. My father who served for all of WWII, largely in France, refused to march or attend for similar reasons and would never join an RSL, the only issue over which I ever saw him take a ‘political’ stance. Wars kill civilians in the main, before we even get to the combatants, willing or conscripted. They will end when men refuse to fight and I for one choose to grieve equally (and privately) for those on our side and those we killed, all are victims.
PM: Well my macaron making career is currently in tatters. I have now made three batches over two days, so far unfilled, and I haven’t got one I would be happy to take to book group on Friday, which was the aim. I knew they were tricky but…….. There are hosts of ‘why did my macarons fail’ websites and after consultation it appears mine were ‘overmixed’, which makes them thin and collapsed and the tops were cracked due to ‘batter was not uniform’ which is surely the opposite? So I am leaving it to another day and I am thinking the next dessert I make for Hawkesbury’s Helping Hands will have lots of decorative macaron shells on top, all at jaunty angles so they look intended, trifle for 50 may be the best option to get rid of the little blighters.
April 26, 2017
Went with Martha and Phil to Aldi as they had cake decorating stuff on sale, I could almost carry all that I bought Got some tins, a good set of piping tubes, a big spatula and some fondant moulds for hearts and snowflakes. But I still can’t do macarons
We worked on my chapter for Martha’s book before I headed off for John’s. We dined tonight at Nur Mohammed, a Malaysian restaurant in Pyrmont. Had one serve of lamb satays, a roti, a small curry, plus paprick vegetables, I also had an unusual rose and grass jelly drink. The bill was $21, not per dish, not per person, the total bill with the drink was $21. Amazing, we will go back again before they go broke.
April 27, 2017
Went food shopping and wondered how I have a constantly full fridge and freezer, but as nothing gets wasted, I must be doing something right. Decided to replace this week’s three failed batches of macarons with one successful batch of Peppermint Creams, made using my new cutters. I tried to do snowflakes, it is cooler today after all, but they were a failure too, they wouldn’t cut through the ‘dough’ and it just got caught in the design. Woe is me, so I tried the hearts and they worked fine, a little detective worked showed that the springs weren’t working properly on the snowflake cutters, so a trip up to Aldi ensued and a replacement set were happily provided. I weakened and bought a fondant smoother and an icing wheel to cut in various designs, but as all this stuff is on special for $2.99 I don’t even feel buyer’s remorse.
The tree-lopper came, paid for by my next door neighbours, to cut down a tree on my property, as it drops seeds into their pool. I am all in favour of my gardening being done at their expense as in this case it was knocking down the fence and I wanted it gone anyway. It slightly recompenses me for their branch that fell on my roof, requiring an insurance repair and adding to my premium. If ever I need a tree man I would call Jimmy in, he did a great job.
April 28, 2017
Decided I really needed another fancy cake tin from the Aldi sale and picked up the remaining shapes in the fondant cutter series. Stop woman, it’s insane, but the total spend was only $20 odd.
I got a call in the afternoon from Dr Yoganathan’s office (aka the lovely Pran) to see him at 3.45. It was nearly 5pm by the time I saw him, he was running way late as he had been to Camden, Blacktown and Mt Druitt hospitals and looked worn out. I had some questions prepared, but he hit me with his, querying if I had taken Voltaren, Indocid etc etc etc. I had taken none of them and he said he is concerned about how I came to have an ulcer after 3 years on Somac which should have prevented one in all normal circumstances. I tested negative for Heliobacter pylori so that cause is out. Anyway, he is going to repeat the gastroscopy on July 10 to see if it has healed. If not, he wants to do a subsequent ultrasound with a camera passed into the stomach as there is a slight possibility that the ulcer is actually a cancer, even though all the biopsies came back ok. I was a bit taken aback by the discussion as he seemed both puzzled and concerned.
All this made me a bit late getting ready for book group but I got there ok. Varied opinions on the book The Illuminations, Brigitte didn’t like it, Rosanna was lukewarm, and the rest of us liked it I think. Wonderful meal of empanadas and salad followed by a beautiful cake topped with berries.
April 29, 2017
Plans are always fluid. I thought I had a busy weekend but Davina rang early to say that tomorrow’s lunch is off as Millie and Dav have colds again. So the three of them plus Beth and Andre will come next Sunday hopefully. Sue also rang early to say they could come over before going back to Killcare, so I raced up and did my food shopping for tonight’s service at HHH and got back to have morning tea here with them.
Got my food finished just in time to head for Windsor. Service went well with over 30 patrons served soup, sausages and mash with gravy, lasagne, chicken pasta and salad. This was followed by 2 amazingly decorated birthday cakes for patrons turning 5 and 8, plus dessert. Generous gifts went to the kids as well. Pretty satisfying night.
April 30, 2017
Was able to watch Insiders for a change. I love Laura Tingle, a pity she is a journalist and not high in the government. She, Megalogenis, Marr, Cassidy, I could make up a wonderful cabinet from that lot and the heaps more like them, such as Tony Windsor whom I would drag out of retirement, but I guess most would start ducking and weaving over time too. Made a Tuscan Apple Cake which involved whisking the eggs and sugar for more than half an hour over simmering water, which was fine, but the result didn’t seem to reflect the effort put in, just a nice light apple cake in the end, but my neighbour Jean from down the road happily took some slices so it was worth doing.
I went with John to see Carol and Jack to present them with the first two copies of the book he has written about their Stationmaster’s Cottage and its restoration, he has worked on it from when he first got sick. It was a surprise for them and it was great that he has finally completed something from his bucket list written last September.
May 1, 2017
Shivers it’s May already! On Anzac Day I was going to go to the new Koi Dessert Kitchen in Ryde but they were closed, so I planned to go today, but I found they close Mondays. I will get there soon to try the delicacies and check on when their cooking classes start, really looking forward to that. So I was reduced to weeding the herb garden and making a Raspberry Tart instead.
Also I finally sat down and looked through the Writer’s Festival talks and Historic Houses Association upcoming events. Booked for Moriarty, Dessaix and (be still my beating heart) John Safran at the festival. His book Murder in Mississippi was one of the best I read last year, his style is unique. Also booked with HHA for a tour of the Woodriff property at Penrith plus separate talks on Interwar Architecture and one on the Lane Cove River in history. So, a useful morning. I have long wanted to see the Woodriff property as I once bought many antiques from Captain Woodriff’s family and some were purchased by the trustees to put into this house.
May 2, 2017
Decided it was time to go back to ICAC after an interregnum dating back to when John got sick. Since then we have lost the delightful and super smart David Ipp and the extremely competent Megan Latham and today we had, umm, Reginald Blanch. He looks bored, he yawns, he constantly examines his fingernails, all the things you would do if you wanted to be somewhere else. He did lose the thread once, in a straightforward part of the proceedings. But what concerned me a bit was that there were references to Mandaeans in the documents and he asked the witness ‘what part of the world do they come from?’, she answered ‘Iraq and Iran’, his reply was ‘oh so that’s a geographic region of Iraq’. It wasn’t a question so the witness didn’t correct him, but jeez Louise if it is all over the documents it might be an idea to Google it beforehand? Perhaps he was having an off day, so I reserve judgment, but I think I’ve been spoiled by Ippy who was such a sweetie but as sharp as a scalpel.
Millie had to come home early today due to a high temp so I may be doing grandma duty on Thursday, she sees an ENT doc tomorrow so hopefully he can help her ears. I treated myself to two Zumbarons to bring home as I waited for the bus, just a reminder how macarons should taste and look, I won’t let those little blighters beat me. Cooked Spaghetti Strascicata with cauliflower, olives, chili, capers, anchovies, breadcrumbs and parmesan, a yummy vege meal with lemon squeezed over.
May 3, 2017
Millie went to the ENT today and her hearing is a little affected by all the ear infections, 4 in 5 months and perhaps another looming. It could affect her speech development, so she goes to hospital later this month to get grommets put in before flying over to see her grandad in England. Imagine testing a one year old’s hearing accurately, the wonders of technology.
We went up to Wentworth Falls for the day to visit my dear friend Sheila in her beautiful old weatherboard cottage, full of superb antiques. As a bonus we got to have a marvellous lunch of her steak and mushroom pie with buttery mash and three other veges, followed by a choice of either treacle or jam individual steamed puddings with fresh made custard. Mmmm, England on a plate. I couldn’t think of eating dinner. Steve rang me as we were leaving to come home and we talked on speaker all the way down the mountains and onto the M4, giving him occasional updates on our progress, the wonders of technology.
May 4, 2017
Went in to Erskineville today to mind Millie, she seems fine now and was repeating back to me, in her baby talk, parts of songs I sang her. We read ‘That’s not my Penguin’ about 30 times, it has textures on the penguin on each page so she loves to ‘feel’ the story.
Last night I was reading the transcripts of the Sharobeem case at ICAC to catch up on what I’ve missed and it is amazing to me that someone could think that their employees, a receptionist, 2 bookkeepers and numerous facilitators would keep quiet forever when they are seeing invoices paid for massive spending on nail salons, hairdressers, clothes, furniture, bogus employees, a Mercedes deposit and more at a non-profit migrant women’s service. The only explanation I can see is fear for their jobs, what a horrible position for them, though they have spoken up now and justice will be done in this case I think.
May 5, 2017
My science guru sent me a new study showing that researchers are having good results (on rats) in treating auto-immune diseases with fasting. Shriek, I needed a sugar hit before the Prof gets wind of this, so I went straight to KOI at Ryde to sit over a pot of tea and a dessert to think over the implications. I had a dish served in a jam jar with caramel in the base, then custard, then rum jelly, then mandarin with a raspberry and some dill, oh lordy. Reynold’s brand new dessert kitchen brings top quality food a little closer to poor old Baulko, where they just don’t geddit. We love to go to C’est Bon in Rozelle and Renaissance in The Rocks but they are both a long way off. However there is a much bigger focus on chocolate at KOI so my choices are somewhat limited. You can see into the kitchen where the many staff are beavering away creating masterpieces, I could work the odd day for free Reynold, just sweeping the floor very slowly while feasting on the technique? I have enrolled for the upcoming dessert classes in lieu.
My opinion of yesterday that justice will be done in the Sharobeem case may have been premature when I remembered sitting through Arthur Sinodinos’s evidence at ICAC a couple of years ago. I thought he’d get 5 years in Long Bay as a minimum, but no, he got a post in Turnbull’s cabinet instead. So could she be dropped into a safe seat, seeing her ability as a cynical financial fraudster is being unveiled, and end up an assistant to Sinodinos perhaps? He could at least show her how to get away with it.
I’ve been reading the ICAC transcripts again tonight and poor old Mr Blanch is still confused about the Mandaeans, bless him. A witness from that community was on the stand and he queried her as to whether the community is called Mandaean or Mandanian. (Read the bloody notes man). Oh it is on the border between Iran and Iraq, he confidently said, equipped with knowledge he mistakenly thought he had gained earlier in the week. It is a small religion, she corrected him. He very, very rarely asks a question, unlike Mr Ipp, and when he does it is rarely beneficial. We can only hope he isn’t promoted to Commissioner.
May 6, 2017
Davina had to cancel the family and friends gathering tomorrow as she is still sick with her cold. I decided to go ahead and make the Hummingbird Cupcakes I was doing for afternoon tea, but luckily I hadn’t started the main or dessert yet. I discovered my hands don’t like piping cream cheese icing any more, just couldn’t squeeze hard enough, so I emptied the bag and added some milk to thin it down and even then it was a struggle. My icing career is looking grim.
Went to HHH in the evening after dropping a few cupcakes off to Brian on the way. We had a busy service of 46 people from age 5 to about 70. One man came back for seconds on the icecream and when there was a bit left out of the 4 litres at the end, I gave it to him. He said ‘thanks darlin, I have most of what I need sleeping in the bush down there (pointing to the river) but I haven’t got a fridge for icecream’. A notice went out from HHH this week saying that there are 41 volunteers in total and each needs to reply listing what work they can do each week. Ok, so far so good, but shortly after another message came saying that unless a person is away they will be classed as inactive if they haven’t responded within 48 hours ’41 volunteers, 41 replies needed’ it said. A later post listed the names of the recalcitrants who hadn’t responded by hour 48. How to attract volunteers, not. Anyway, I decided I want to be there for the clients and I will let the internal politics wash over me.
May 7, 2017
This morning I had ideas about going to the much acclaimed horror movie (yes, I said horror movie) Get Out, which is playing to great reviews. Needless to say John is not interested. It is set in post-Obama USA and uses a horror genre to explore the mess that is American race relations. Anyway, I got into gardening instead, so I am not in a position to review it, however I do have a big bin packed full of jasmine and fishbone fern, horrors of a different sort. Also I was cleverly able to hook the spade handle over a dead branch on the Eucalyptus nicholii and pull, it was either the handle or the branch and luckily the branch gave way, so lots of dead wood for the bin too.
I got onto finalising my bookwork for the shop and discovered that the cheque book is missing, how can it be? I have emailed the accountant in desperation but no reply as yet. This was more horror than I could cope with and cemented my decision to garden rather than paying to see a movie while thinking about a missing chequebook. It is almost that I CANNOT do anything to do with the shop, the facebook page and website are still online, I am just unable to close them, but losing the chequebook takes the cake.
May 8, 2017
It is sooo long since we had a picnic so today we drove to Mt Wilson and had a wonderful long day up there armed with sandwiches, cupcakes, beautiful apples and a thermos. I climbed down from a lookout, on the advice of a couple who had done so, and found amazing Aboriginal paintings and rock carvings, the paintings were the biggest and most impressive I have ever seen. Took photos for John who waited at the top. Next we walked around Merry Garth garden and I bought some jonquil bulbs and a pot of columbines (there has to be a reward for all this gardening). After lunch in the park, we walked around Bebeah garden and marvelled at the dry stone walls and statuary in this superb 20 acres. There are two cottages nestled in the gardens and we plan to rent one in the spring for a couple of nights. The autumn leaves and sunny but brisk weather were just what we needed. It is wonderful to be in a place with no shops, no advertising, no ugliness, just beauty everywhere you look.
On the drive home John got a call from Nada to say that her application to the PBS to fund him to have rituximab every two months for the next two years has failed. They won’t fund it unless he has active cancer and at $4000 a dose he won’t be able to fund himself. Nada couldn’t resist going on to say that he didn’t really need it and she has no concerns about his not having it. This of course is the direct opposite of what she said when she put in the application “I think you need to have it for two more years as an insurance against it coming back because this cancer is so aggressive”. Why can’t she just say “sorry, I did my best, but didn’t succeed”? It shits me every time, we are big people, we don’t need platitudes.
May 9, 2017
It is amazing what you hear if you are just open to strangers who want to start a conversation. I bussed in to ICAC today for the evidence of Eman Sharobeem and was approached at morning tea break by a chatty retired school principal who “lives two doors from Prof. Gonski”. She commented that he and Malcolm Turnbull know each other from both being on the board of Sydney Grammar and “Malcolm has taken advantage of that to press Gonski into this MkII business and it is sooo embarrassing for him (Gonski)”. This led to her telling the tale of Turnbull’s son and her son being classmates at Grammar and both being in a debate with Riverview, whose team won. Turnbull “verbally abused the Riverview team and when their young teacher intervened he abused him too” until my new found friend spoke up and told him “he was setting a bad example and the boys needed to learn to be gracious losers”. I contributed little except that I missed Commissioner Ipp and preferred him to Reg, “no-one wants the job after the disgraceful way they treated Megan Latham”, she said, “this fellow is renowned here for not being able to make up his mind and taking forever to write his reports, but we are stuck with him for now”. She had weekended with one of the legal staff two weeks ago and knew all the goss. Goodness, morning tea was over already, toodle-oo, nice to talk to you.
I am in two minds about Sharobeem’s evidence, she is either a compulsive liar or completely self-delusional, I can’t make up my mind which at this point. She talks way too much, answers questions with a thesis instead of yes/no and was almost driving counsel assisting (and everyone else) towards some serious headbanging with her repeated circuitous answers, “by the way…..” she kept saying as if she were talking over the back fence. “I did not have sexual relations with that woman” was my new friend’s sotto voce comment as we headed to the lift.
May 10, 2017
Sometimes in your life you can be blown away by the kindness of friends, yesterday was one of those days.
Today I luxuriated in spending the entire day at ICAC instead of scurrying home before the buses get too full. I am no closer to understanding Ms Sharobeem, but I suspect some serious mental illness in there somewhere, whether pre-dating or post-dating her being called before the commission, I am not sure. She had to step down weeping this afternoon and a cynic would say it was to regroup and think her way around some curly questions, like how your set of six dining chairs worth nearly $3000 happens to get charged to the charity you lead. But I was sitting near the room to which she went with her lawyers to recover and she was hysterical, I think she is in quite a fragile mental state and the evidence is only going to get worse. As Reg said to the accused “If you are shocked by this, there are a few more shocks coming.” Her physical appearance has deteriorated so much in the last year that she is barely recognisable from the buxom, coiffured, made up, glamorous woman to a gaunt shadow of herself, aged by ten years at least. No joy in seeing her suffer.
I met up with John in town to go to the Historic Houses Association discussion on inter-war red brick apartment buildings of Sydney. Even though this is not a period I am particularly fond of, some of the Art Deco examples were pleasing. Apparently flat living was a middle class aspiration then, the working class preferring the small terrace houses of Chippendale. Too tired to even sup the complimentary wine, but the bus trip home was a record, 45 minutes from step-on in the city to lights-on in Baulko, good one.
May 11, 2017
I resisted the temptation to go to ICAC today, a girl needs to do some work sometimes. I love the random conversations that happen when I am out and about. Yesterday I was passing Sydney Fire Station No. 1, across the road from ICAC, when a firey emerged and crossed my path. I nodded, he nodded, he said hello, I said hello and next thing there was a 10 minute conversation on the footpath about firies vs ambos vs police and the different personality types and motivations that are attracted to each. We were both on the same page on that one. He was on a break, I was in no hurry, so we just chin-wagged and parted, I love those little ‘passing ships’ moments.
Got some gardening, washing and grocery shopping off the agenda today (but I did manage to scroll through the ICAC transcripts late in the day). Made a cherry pie, canned cherries at this time of the year, but it still tastes good. Kenneth rang this evening and confirmed that he won’t be flying here again. I thought that was the case but it was worth a try, I miss him.
May 12, 2017
Today I finally followed up on my promise to take Brian to lunch, at Entrata in Kenthurst. He turns 91 next week, I can’t believe it, I remember when he was coy about having turned 60. Someone gave him a ’60’ keyring and he didn’t want to use it for vanity’s sake. Enjoyed our lunch, though the portion size of the main prevented my ordering a dessert, which is unusual for me. We agreed to go to Dural for lunch soon, in these areas we meet about half way between our homes. Brian is still very politically savvy and it is hard to bring up a political or social issue that he hasn’t considered and formed an opinion on.
I was up till after 1am today mesmerised by a book that I had been vaguely aware of for years, but had never got around to reading. I had thought Tirra Lirra by the River, written in 1978, was an Aboriginal themed book, but that was a year I was incubating two babies so the world of literature passed me by altogether, then and for many years after. This story of a woman trying to escape, first her small town and then her husband, is so beautifully written that I spend a lot of time thinking about it when I am not actually reading it. It reminds me of Elizabeth Harrower’s work in both style and content and has the same ability to transmute the reader into its plot. The depiction of her marriage as a cage, not even gilded, from which she views the outside world between the bars, resonates for me as a depiction of psychological immurement. As with Harrower it is difficult to imagine that she hasn’t lived the experience.
May 13, 2017
Got my aquilegia seeds sown in pots for the front garden, I may come to regret not lashing out on plants if my seeds don’t come up, but hopefully they will. Trying to buy Bergenia seeds too, but so far I have only found them on line, not in a nursery. Trying to have some thing to actually plant instead of just pulling out weeds.
Went to HHH in the afternoon. We had over 40 for service tonight. I was nonplussed when we unloaded the van with the Coles ‘just out of date’ food and some of the clients pounced on all the doughnuts and cakes, eating them in a flash before we had time to even set up the tables to serve the meal. Usually we keep those till last, after the dessert, but they were too quick tonight. I shouldn’t be surprised at 3 or 4 doughnuts each for entrée when I see how much tomato sauce gets poured over meals that someone has carefully cooked. John had fish and three veg ready when I got home, no tomato sauce thankfully.
May 14, 2017
Had a good run in to Erskineville with John to see the fam for mother’s day. We then set off to COOH restaurant on Burke St for lunch. Louis’s mum Sue was down from Queensland for a few days and we all enjoyed a lovely lunch there before heading back to their house for Davina’s Caramelised Apple Upsidedown Cake and cream for afters. Millie was exceptionally good and wore her new dress, looking quite the Victorian baby in black and white checks with grey tights.
We decided to try a movie at Newtown at random and Berlin Syndrome was on, we knew nothing about it but were very pleasantly surprised. It was a well done, very scary Australian drama set in Berlin and I can’t say more in case I spoil it for someone else.
If anyone has been wondering why the blog disappeared a couple of days ago, and I know at least two people are in that boat, here is the story. I tried repeatedly to log on over two days on two computers. Then I had the brainwave to text Mark in Canberra who set it up for me originally. His reply was basically that ‘oh, sorry I havent paid the fees for it’. ‘Fees, what fees?’, I replied. It turns out he has been paying for the setup and the maintenance for years and now refuses all offers of reimbursement, but hey bingo, this morning the blog is back on line. Thankyou.
May 15, 2017 (written in Word while the blog was down, I am too lazy to retype it and too ignorant to work out how to change the font and colour)
John is always telling me to trust my instincts. He accepted an invitation from his next door neighbour to be part of her trivia quiz team ‘because we are a couple short’. My instincts told me to avoid it like Ebola but, for reasons I always have trouble explaining, even to myself, I went against them and turned up after saying no a few times. My meal was hot smoked trout tacos, light and fresh I thought. But they were just wraps with lettuce and some smoked trout bits you could smell but barely see without a magnifying glass. I put the meal down on the table of ten and encouraged them to share it, but sadly it went out late in the night squashed under another plate and two empty beer glasses, there were no takers. We came second, I got some answers right, I should be pleased, but I realise that I prefer my own company to something like a pub and unless I am in a corner with someone interesting it just doesn’t work for me. Trust your instincts girl, that is three hours of my life I can’t get back.
May 16, 2017
Off early on the train to Erskineville to mind Millie, along with her other grandma Sue who is on holidays from Queensland. We had tea and a natter while Millie was sleeping, she had a little op to put grommets in her ears on Monday and needed another day off ‘baby school’ to make sure she was doing ok. Later we all went to the Blackbird Cafe for lunch and took a short walk to the L’Oreal remainder shop, entry to members only, which is housed in unmarked premises nearby. This was news to me but Sue is a member. I discovered that the lipstick I wear, MAC, must have come under the L’Oreal umbrella at some time and I got two remaindered colours for $5 each. I am miserable about paying for makeup and MAC lippie is my only splurge, so I felt pretty good about finding it for 5 bucks.
Got the train to Roseville at night to meet with our movie group and see the French film Things to Come, which garnered scores varying from 1 to 4, out of 5, from our group. It was aesthetically delightful, but not to everyone’s taste. I enjoyed sharing the languid pace and very French attitudes, but I understand those who weren’t keen. We went to Salt, Pepper, Nutmeg for a bite afterwards and I had a Green Tea Pannacotta with Lychees, understated, not too sweet, but yum.
May 17, 2017
HHH has introduced a Wednesday lunch service from today for a one month trial. We will be assisted each week by four inmates from the John Moroney Centre in Windsor who are nearing the end of their sentences. I volunteered last week for cooking/service but due to some confusion I was only informed I was on at 9.30 am when I was at John’s still in my jamies and they wanted me at Windsor by 11.30. They had enough vollies there, so I got the day free, however I would have liked to be part of the first lunch and didn’t much like waiting around checking emails for days to see what was happening.
We ended up going to Manly so I could get a haircut from the lovely Martin with his Scottish brogue and offbeat sense of humour, for example the floating Lego men in his water spray bottle who all face down and swish around looking like drowning souls. Ended up briefly at Newport for a quick walk along the beach and a late snack at a newish café there. Good to see the sea.
May 18, 2017
I needed to tidy up a few loose ends today like ordering seeds for my new rockery, finishing something I was writing, rereading the book for our group next week……. god it sounds so mundane when you write it down. My love/hate relationship to computers went into hate mode when I was deleting passages I had written and inadvertently pressed delete when the cursor was hovering over the files icon, that sweet little one that looks like manila folders. The icon disappeared and now I can’t click on it to find files, photos etc. I am sure they are still in there but the icon to get to them has gone…………grrrrrr.
Also made Passionfruit Icecream, a Chocolate Fudge Cake to ice as a gift for someone and a curry for dinner tomorrow night, they are always best the next day, but those successes are overshadowed by a stupid missing icon. More frustrating than a failed cake by far as I don’t know how to correct it, but I could always make another cake……….grrrrrr.
May 19, 2017
I am an idiot, what’s more I know I am an idiot, but can’t seem to change this particular idiocy. Last night I couldn’t sleep because of a missing icon on my computer. Donald Trump has ‘the code’, Syria is at war, the world is going to hell in a handbasket for more reasons than I can count and I am still deeply stressed because I deleted an icon accidentally. I once had an Indian friend who said the key to not stressing was to list all your worries on paper, regardless of their importance, so a pesky fly would get the same ranking as Trump. Then he said rule out all the ones you can’t control, so out Trump and you are left with the fly for example. Then deal with the fly or its equivalent and all your problems are solved. It actually works if you do it seriously. But the icon is still missing…….
I iced a cake today as planned and boy, do I have a lot to learn about cake decorating. I used a brand new silicone bag and metal pipe and as soon as I applied any pressure the pipe shot out of the end like a bullet, well a slow bullet. I had to revert to my mother’s old bag where the pipes screw on. Buttercream Icing Class 101 required. I know the result is not anything like the masterpiece I envisaged, but the recipient in this case will think it is divine.
May 20, 2017
Today we were at Penrith by 9am with other members of the Historic Houses Association to inspect two historic homes there, one of which is still occupied by the descendants of the original owner. Unfortunately every one of our party of 35 people was over 60 and most a lot more, all except the young Frenchman who heads the group. There isn’t much interest in heritage among the young in Australia sadly. Both houses now look out to views of project homes and high rise under construction in Penrith. Both owners recalled tales of having to sleep in their houses years ago, with no electricity, to try to keep vandals away. But as soon as they weren’t there people would break in and do things like smashing the marble fireplaces or spraying graffiti on the walls, the houses are lucky to have survived the Philistines at all. What did I say about the young and heritage?
Home in time to get ready for HHH service. One of the clients asked me out tonight and I had to do some delicate side-stepping. His reaction to my refusal to go out next Sunday was ‘don’t worry, we can go another time’, oh dear, refusal is not my strong suit. I have suspected this might be coming as he waits for me to turn up each weekend to tell me what he has been doing during the week, a privilege he doesn’t bestow on the other volunteers. Apart from one fellow losing it totally because someone touched his belongings (or he thought they did) tonight went well with about 40 people served including 6 children and 2 pregnant women. Doctor Dan was in attendance doing blood glucose tests and blood pressure checks. John had dinner nearly ready when I got home and guffawed when I said I had been asked out, humph.
May 21, 2017
John has been collecting fine china figurines for the last 18 months or so but one has eluded him, a tall Lladro figure of a Deco look woman called ‘Afternoon Tea’. I have been telling him to watch the auctions as everything comes up eventually…..and this week it did. We went along this morning to my old colleaugue David Barsby’s auction and he got it for a very good price, $220 as against the usual $450-475 US that he has seen it for on ebay. He is now a happy chappy rearranging his cabinet to make her the star, they all have names incidentally, which is just slightly weird, but seeing I named my marble bust, I can’t talk.
Then we raced into El Karim at Roseville to see if mine host could rustle up some food in 15 minutes, it was on the table in 5, a pile of Lebanese bread with hommous and some delicious zucchini chips with a pot of garlic sauce. We were in a hurry to get to a movie next door, Viceroy’s House. It was a strange blend of historic accuracy and Hollywood ending, which was very satisfying in that the story of India’s partition needs to be more widely known, but surely ‘Hindu boy manages to find Muslim girl’ was an unnecessary Romeo and Juliet ending. Britain has a lot to answer for, current problems in Afghanistan, Palestine, Iraq, India and Pakistan and so many others hark back to Britain’s interventions. Don’t even start on Africa. Surely Britain was the USA of its times.
May 22, 2017
Funny old day of things looking wrong and turning out right. We were at the National Trust at 9.30am for a talk but soon discovered that John had written it into his diary for the wrong month, it is in June, but better than being April I guess. Then we decided to see if we could track down some of the super sausages made for Sydney restaurants by Chrissy, Carol’s son’s partner. It didn’t look promising so we headed for Rozelle to The Essential Ingredient to pick up a couple of things. Of course we had to have elevenses at C’Est Bon first, but were dismayed to find the owners we have known for about eight years have sold out. Wrong turned to right when we discovered the cakes are exactly as they always were, a rare achievement when a good place changes hands. The new female owner has an MBA in technology, but wanted a change so she went to Le Cordon Bleu to learn pastry skills.
Just pouring my tea there when I got a call from Chrissy’s Cuts to say we could go over to the sausage factory, knock on the papered-up windows and buy some of their amazing produce, with a lesson on how to cook them included. Back from there to Rozelle to drool over cooking equipment, ah bliss, I could spend thousands there but got out today for under $25.
John can’t understand why I am naturally so frugal, ‘If you want it, buy it’ he always says, shaking his head, but when you were brought up with no money, it is instinctual to ask ‘Can I manage without this?’ and I doubt I would change much if I won Lotto. I still buy packets of dye every winter to dye my skivvies (from David Jones 20 years ago) and my thick winter stockings back to black and my favourite skirt back to orange. It is rare for me to buy clothes new. We got home at 4pm but unfortunately the day ended with another wrong: lovely, cuddly, funny, clever Bryan got sent home from Masterchef. If he had cried, and he almost did, I would have too.
May 23, 2017
Two doc’s appointments for John this week, the first today with Gemma his cardiologist who gave him good news, his heart has improved and she suggests moderate exercise now he has got to this stage. She is direct, clear, unhurried, compassionate, professional, a super doctor in every respect.
We spent the afternoon at John’s where I finished rereading the book for our group on Friday and wrote my introduction. As the book, Those Who Come After, is largely autobiographical, my review features more about the story and less about the writing than is usual, but that was what caught my interest, the crossover between novel and autobiography.
At night we went to see the first of this year’s Writers Festival offerings, Liane Moriarty at The Concourse in Chatswood. Was it interesting? a little bit, was it inspirational? no, would I have gone if I’d seen her interviewed before? no. I am sure she is a lovely lady and I have recently enjoyed two of her books but a Dessaix or a Franzen or a Sedaris she is not. Frankly I would have preferred to start the next of her novels than to hear her speak, but it is easy to be wise after the event.
May 24, 2017
Did some of my shopping for our book group dinner on Friday night and then got the sausage rolls cooked. John, the man who is helping me in the garden, arrived unexpectedly, so we spent a bit of time out there making plans and discussing what needs to be done to realise them on a very tight budget. He just comes now and then and stays for however long he has free, but I have missed him a few times lately and we needed to catch up.
Went to the doc in the afternoon and he said I may need to go on low dose antibiotics permanently. We knew it would come to this sooner or later, so it is not a huge surprise, but it is still disappointing as I wanted to stave it off as long as possible. A month or so ago the gastroenterologist had to take me off two regular medications that were working to hold back a chronic condition and it has now worsened considerably. You fix one thing and thereby jigger another. That’s life at nearly three score years and ten, yikes am I really at that biblical endpoint? Must be a calculation error surely. Better have that 70th party after all.
May 25, 2017
We had John’s blood tests then an appointment with Dr Hamad today and it was as interesting as usual. Firstly, she looked gorgeous, she is a very beautiful woman but today she was glowing. I asked if she had had a holiday, she said no but she was seeing a few success stories today and John was one. His blood tests were bang on normal and she said he was free to ‘do whatever you want, travel, whatever’ but he needs to see her every two months for two years. Which brings us back to her failed application to the PBS for rituximab treatment for that same period. She said there is no proof that it would be effective, but it might be, however with two monthly check-ups she can get him onto the drug immediately if there is any recurrence. I asked ‘what if he were James Packer, would you recommend he spend the $48,000 and have it?’ No she said, I wouldn’t stop him but I wouldn’t recommend it. Which of course makes you question why she was so keen before and wanted the government to pay for it?? But Nada is Nada and that is as close as we will get to an answer.
Did some more food shopping on the way home, for the umpteenth time this week it seemed. Everything has coalesced into one week, two major doctors’ appointments and some tests for John, one doctor’s appointment and tests for me, three Writer’s Festival talks, two Historic Houses talks (one of which we had the wrong date for), book group dinner here tomorrow, then dinner and overnight stay for five on Saturday and breakfast on Sunday for seven. I might get some caterers in for my birthday party, if it goes ahead…..
May 26, 2017
Busy today cooking for book group tonight. By 5pm I was pretty worn out, but a bubble bath did wonders for my constitution and I was happy to see the guests arrive at 6.30. Made Ottolenghi’s Caramelised Garlic and Goat Cheese Tart with a salad (6 heads, not cloves, of garlic in the 2 tarts, the French and I are at one on garlic). Probably 10,000 calories per slice, but I would happily do it again once in a while. Also did a Pear and Maple Syrup Upside Down Cake. Lots and lots of food brought as well, including sushi, haloumi, corn fritters, a casserole, an amazing cake and more. The book was well received, I didn’t mind a bit reading it a second time. As usual it was a great night of friendship, literary discussion, food and wine.
May 27, 2017
Saw Robert Dessaix for the umpteenth time at the Writer’s Festival. He is more gaunt than ever but so, so impressive. He spoke on Hugging, Kissing and Saying I Love You and at first seemed to be saying how overused all these things are and how in mediaeval times one only kissed someone of equal rank, for example a knight kissed a knight but not anyone below, but now ‘people you’ve barely met kiss you on the lips’. But nearing the end of the talk he became quite emotional, once when reading a poem by Pushkin in English and then in Russian and again when answering a question and in reply said that he knew it was silly, but he needed to hear his partner verbalise his love more often. This is really what the piece is about, he said. He pretended to blow his nose a couple of times to disguise the fact that he was struggling not to cry. I have never seen him anything but tightly controlled, it was a revelation. It seemed as if a crack opened momentarily and I saw deep into the soul of this most private man, it closed quickly but it was a moment I will remember.
John Safran was great, I love his willingness to face difficult (and dangerous) people so directly, to really try to see what makes them tick. I can’t wait to read his new book Depends What You Mean By Extremist: Going Rogue with Australian Deplorables. Love him to bits.
Got home in time to beat the family’s arrival and after dinner enjoyed playing around on the computer looking at party invitations with the girls. Louis located my missing file icon in 2 minutes, so much grief for nothing.
May 28, 2017
Breakfast of Shakshuka and Sausages was a hit, thankyou Mr Ottolenghi. Millie is walking if held by one hand, understands what we say and gabbles constantly in her own little language.
Well the party is on, October 1st it is! The girls are keen to help and Davina has started a list of food, lists are very important in this house and in hers. I have a tentative guest list which would double if there were more space, so hard decisions need to be made. ‘Save the Dates’ will go out soon as it is on a long weekend and I will do invitations later. I had hesitated until Nada said to John this week that he could do whatever he wanted now. Lots of fun planning ahead.
May 29, 2017
Went up to Windsor this morning to take Brian for sushi. On the way I went to Windsor Library and, blow me down, ran into the client from HHH who asked me out 2 weeks ago. He is just lonely but he is damned hard to get away from. He promised to bring me in some press cuttings about when he got line honours in the Gladstone to Brisbane Yacht Race years ago, sorting of proving he is worth going out with I guess. Oh dear………he is a nice person, doing no harm, but it just makes life difficult.
Got home and went onto my pooter to check my emails as the HHH roster is due to arrive, but my anti-virus wouldn’t let me access Hotmail, every other site was fine. I rang the anti-virus people and they did an update which apparently went ok, after which my computer wouldn’t work at all. He accepted their update was the cause, ‘it’s corrupted something’, and spent from 3pm to 5.30pm on the phone getting me to press every frigging button in existence until he conceded defeat. He says he can fix it if only I can get the computer started again, ha bloody ha. I am now at the library, doing the blog and feeling sorry for myself. Shit day all round.
May 30, 2017
I particularly wanted the computer yesterday to do some price research for an old client who has been after me for months to value some small pieces she has inherited so she can decide what to keep, perhaps what to sell. After putting her off for so long I could hardly do it again, so she arrived with a big box of silver, jewellery, lace etc for me to go through. Luckily I was on top of most of the things so the lack of the computer didn’t cause a problem. She was pleasantly surprised when her teapot came in at $500, but other things she thought would be worth more. I baked a Sponge with Threeberry Jam and Cream for morning tea afterwards, you can’t beat a nice sponge fresh out of the oven.
Michelle rang and then came over after lunch and we spent a relaxed couple of hours discussing travel, politics, books and swear words, as you do. The sponge came into second service with a pot of my favourite Rangitoto Blend tea from New Zealand, I will need to go back soon to buy more. I wish.
I got up the courage to ring Chris from ESET, the anti-virus company, to say that I thought they should help to get my computer working and to my great pleasure they agreed to let me take it to them in Neutral Bay tomorrow morning to see if they can fix it. What would be the chances if it were not an Australian company? Luckily they had relocated from Queensland to Sydney. I can’t fault their service, whether they can fix it or not. He did say that in the many years he has worked there it is the first time this problem has occurred and the first time anyone has asked to bring their actual computer in, hands on technical support, I am all for it. Can’t do lunch service at HHH tomorrow, but I need to have the computer working as requests for help come in from them almost every day, so it is in their interest too.
May 31, 2017
So, am I on the library computer? No, I am not! I took mine down to Neutral Bay this morning and the lovely Chris had it all day. We went to a movie, had a snack, did grocery shopping, wandered the streets, periodically ringing Chris who said ‘just want to do one more thing, give me another hour”. Fix it he did, but he went well beyond the call of duty and did much other techie stuff that I can’t describe. Three cheers for ESET NOD32, my anti-virus provider ever since I’ve had a computer and now for life.
Yesterday when I was making the sponge, my old Sunbeam Mixmaster stopped suddenly. It has been in my mind for a while to ponder who will survive the longer, the Mixmaster or moi. I began cooking on it when I was 6, so I guess it was bought about 1952 and has never been serviced. I use it at least 5 times a week, most weeks much more than that. I was very sad at its loss, till I discovered I had no power in the kitchen, then reset the safety switch and off she went again, I had just overheated her with a 12 minute beat on full speed. Smiling.
I couldn’t cook for HHH today as I went to the city, but Hawkesbury Racing Club donated all the leftovers from a function yesterday which formed the full meal for today. This is great, but if someone had worked all morning on cooking and arrived to find their food superfluous to requirements it would be disappointing. Co-ordination is difficult when you are getting sudden large donations, not sure of the answer.
June 1, 2017
June! How can it be? Like sand through an hourglass, these are the days of our lives. Now where have I heard that before? Well, I got my birthday party ‘mark the calendar’ notes away and within a minute many of them were opened, just showing how we sit on our computers these days. I did briefly consider hiring a premise for the party so I could invite the full complement of people on my wish list, including long-time clients of the shop, but it is so much more personal to have it at home, though space is limited. Perhaps two parties was the answer, I don’t know. Jack called over to retrieve his jacket and we sat over a fridge raid lunch and chewed the fat. About 4pm I retired for the day and started a Lionel Shriver book, The New Republic. In 1998 she couldn’t get any American publisher interested in a novel about terrorism, a “foreigners’ boring problem”, now she says Americans are “too interested in terrorism” and it came out in 2012.
June 2, 2017
Went to Erko to mind Millie today. She is still talking her head off in her own language but she understands what you say. She didn’t want the tuna and avo sandwich I made her and because she can’t manage ‘no thanks grandma I’m not hungry right now’ she over reacts mightily, pushing it away strenuously and talking 20 to the dozen while shaking her head for no. An hour later she happily eats the same sandwich, all smiles. The hit game of the day was head butting, she laughed madly each time and never tired of it. The New Republic book is not grabbing me sadly. Tempted to speed read it to the end tonight so I can start another. There is a new book about (and called) Anaesthesia which I am tempted to get, but the author is a journalist, not a doctor, this puts me off a little bit. Will wait for some reviews.
June 3, 2017
Bad sleep last night, I would never have survived as a doctor or nurse, my body clock is set in cement and always has been. So I woke up feeling like I had a hangover and anxious about unimportant shit (how come you can always sleep when it is nearly morning by the way? when I am elected god, these things will change). My cousin and her partner are coming tomorrow so I made a cake, the same one I did last week for the book group because I was still in zombie mode at 9am. Then did Macaroni Cheese for 50, but used leftover shakshuka sauce on top so it made a complete vegetarian meal, not that a single client is vege I might add, but we had spag bol as well. Making mornay sauce by the litre was interesting, I grizzed all the ingredients up in the blender which was efficient and tasted just as good once cooked.
Service tonight was peaceful, about 30+ people and we managed to avoid the threatening rain. I asked my friend Brian at Windsor if I could reheat my food in his oven just before service and this seems to be an excellent way to have it piping hot over winter. I asked two of the teenage boys to help me set up the folding tables but they were unwilling to help. If I were running the show they would learn how to help if they wanted to be fed, but I am not the boss lady so I just gave them ‘the look’. Quid pro quo fellas.
June 4, 2017
Cousin Angela and her partner Chris came for morning tea and stayed till 1.30. She brought quite a few jackets, some gloves and hats for HHH as well as a box full of canned and packet food, some of which she had collected amongst her friends. I will deliver them next week. I looked out some old family photos of her mum and dad, both of whom are now dead, so she has taken them to copy. We were surprised to find that Chris has known John’s nephew Simon very well for over five years so we will invite them both to dinner as a surprise sometime soon.
In the afternoon we went for a local walk in the bush at the very end of Cross St and eventually found ourselves under a bridge which spans the creek for the M2 freeway. It was a bit of a puzzle how to get up out of the valley there and what started as a short stroll ended up being a more than two hour walk, which John managed without problems so his heart has improved a lot.
June 5, 2017
Our loved ones climb Machu Picchu, cruise in Antarctica, do long walks in Japan or take photographic courses in Paris, but we are planning to use our pensioner freebie rail tickets to go for a few days to……drum roll……. Wagga Wagga. I want to see the National Art Glass Museum (which I have only just discovered exists) and John wants to see an exhibit at the art gallery there. I found out that they are next door to each other so then I knew it was meant to be. If we can get to Monte Christo Homestead as well I will be a happy chappy.
I went for another bushwalk in Cross St today, or tried to. There is a beautiful fern-filled gully nearby and I assumed there would be a way into it somehow. I scrambled down, no path, but couldn’t get right to the creek. Perhaps there is another way in, I need to get a map from the council. I like walking but hate passing boring residences when there is such lovely bush around.
My gas bill is 300 bucks. How can this be? I have only turned the fire on once, last week after they read the meter, so it is totally related to the oven, my only other gas appliance. I do use it a lot, I am an oven cook, but the last bill was $142. Something smells in the gas department, oh that’s right we are selling it all offshore so we can’t even bake a cake without running up a crazy bill. I haven’t made 300 cakes this quarter, nor 150 either, nor 75, so it must be multiple dollars every time I turn on the oven, ridiculous.
June 6, 2017
What a goose I am. I was thinking about the huge gas bill when it suddenly occurred to me that the oven is electric! It is just the gas top that has run up the $300 and I don’t do much on there, veges all go in the microwave, so I need to phone AGL and query it or better yet put a comment on their Facebook page. That has worked so well for me in the past with supermarkets, insurance, whatever, as others can see the complaint they are quick to answer it and the moderators are not just call centre jockeys who have no power.
Loving seeing Yotam Ottolenghi on Masterchef, always great when a talented person is damned nice as well, unlike a certain Aussie tennis player whom I could happily kick up the rear every time I see his ugly mush (we get to look like our personalities eventually, he does already). John bought me Yotam’s book Plenty a few years ago and it is well used. The 5 dish Mezze he did last night was so good I want to cook the whole five dishes together when I am having people over. So easy, 4 out of 5 are vegetarian, so delish I could have licked the TV screen.
Went up to get a pink slip for my car and my mechanic obliged but refused to charge me, no, this one’s on me, he said. What a sweetie he is, I am surrounded by lovely people and rarely have to deal with a tosspot. I guess we spend our lives filtering them out so by 69 and three-quarters we are in a bubble of good folks. Nice.
June 7, 2017
Well I was right about Facebook getting the best complaint response. AGL are all over it, but it is very weird. First they tell me “currently you have a credit of $117.02 in your gas account and $62.96 credit in your electricity account”. Excuse me, how did that happen? You mean you overcharged me before but are just fessing up? But it gets more interesting, further study of the bill shows that the graph for the year is naturally up and down on usage, except when it shot up at the end of Feb and stayed there, exactly the same usage for three months straight, but about double last winter’s usage when I had the fire on all the time. Something is rotten in the state of Denmark. I have expressed doubts that the metre was read at all, we shall see what happens. Is there an energy ombudsman I wonder?
I have come over all Ottolenghi (or am overcome with Ottolenghi, I’m not sure which). So tonight I did one of his recipes from the net for dinner and the flavours were a bit different to usual, very lemony, garlicky, with fennel seeds and cumin, using a whole celeriac, that beautifully ugly vegetable. The recipe was a keeper and plenty left for us tomorrow night.
June 8, 2017
No I am not obsessed, but I couldn’t help but make an Ottolenghi cake today, when it is promoted as ‘a slice of Provence’, how could I not? It is his Apricot, Walnut and Lavender Cake, haven’t tasted it yet but it looks damned good. Lavender in the garden is a bit off colour at this time of the year, but it smells as good as ever. A funny thing happened when I was making it, there is now no low speed on my Mixmaster, normally there are 12 settings, but now it starts at full speed and goes straight up to a scary, noisy rocket speed, sending cake mix all over the kitchen, so it is pretty much unusable. Obviously when it set off the safety switch last week something blew in the motor. Sooooo I got on to the Kenwood Chef direct website, then spoke to them on the phone, their top of the range model worth $880 is on special for $449, though the lower ranking models were still $400-750. It is arriving delivery free from Kenwood in the next few days, am I excited? You bloody betcha!
I was planning to work for HHH tomorrow sorting coats for the day, after a huge collection was picked up from St Ives Shopping Village, but it has just been postponed. Our boss lady Linda is spending today going to the ‘secret’ camping places of our clients, offering them dry clothes, tarps, blankets etc so perhaps she is overwhelmed with work. Great that they trust her with their locations, makes it easier for them as it is too wet to walk long distances to collect in the rain, defeats the purpose.
June 9, 2016
John and I went first thing to Porters Paints, who should have me on their payroll as I am always spouting their products, to look at chalk and lime style finishes for the two tier table he has just finished making. It is a gift for a friend who couldn’t find one she liked to put her pot plants on. It will look smashing I think. Not just a pretty face my John.
Seeing my anticipated coat-sorting day for HHH was cancelled, I have spent today sorting the photographs on my computer instead. I have deleted literally thousands, only keeping important ones and putting them in folders by subject. I have spent about 8 hours on it, boring but necessary. Simultaneously cooking the 8 litres of soup I need for HHH tomorrow night. It tastes like….well that’s the problem, it doesn’t taste at all, despite the pack of dried peas plus potatoes, carrots, capsicum, onion. Will need to add a ham hock or something to get some flavour into it I fear, though straight vege was the plan, it is dishwater soup at the moment I’m afraid.
June 10, 2017
Dav, Louis and Millie are in Dubai en route to Birmingham to see Louis’s dad, then spend time in the Lakes District, one of my favourite parts of Britain. They managed the 14 hour flight without too many problems, could be a nightmare with a small child but she slept quite a bit.
Managed to tease my soup into some sort of acceptability with another packet of split peas and some bacon. It went over gang busters at service tonight, many lining up for seconds and one lady asking for some in a plastic container to take home. Somehow it is as satisfying as winning a First for cooking at the Easter Show. I had asked Brian if I could heat the soup again at his house just before service. Yes he said happily but when I got there he wasn’t home! So I was carrying 8 litres of soup in search of a stove top and luckily found his next door neighbours home and heated it there. I took up a box full of cans and packets of food tonight to bolster the HHH stores of food for hampers, my cousin had collected most of it and I just added a few things.
June 11, 2017
We had an amazing lunch at Sean’s Panaroma at Bondi today to celebrate John’s birthday. I had two entrees, Clear Fish Broth with Prawn and Scallop Dumplings and Marine Greens and then Jimmy Ruff (an Australian fish like mackerel) Stuffed with Farro and Currants, Wrapped in Radicchio and Panfried with a Fennel and Finger Lime Salad. Dessert was Parsnip and Ginger Pudding with Plums. John had a quail entrée and King George Whiting for main then an amazing trifle. Pricy, but worth every cent, our go-to celebration restaurant and John’s favourite.
I reread the old story of the Two Wolves and it means even more to me now than when I first stumbled on it. It fits my personal theory that there is no-one wholly good (that blows the idea of saints out of the water) and no-one wholly bad (so you can never accept capital punishment which kills the good person with the bad). I love the image of waking up each day and feeding the good wolf.
An old Cherokee is teaching his grandson about life. “A fight is going on inside me,” he said to the boy.
“It is a terrible fight and it is between two wolves. One is evil – he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.” He continued, “The other is good – he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith. The same fight is going on inside you – and inside every other person, too.”
The grandson thought about it for a minute and then asked his grandfather, “Which wolf will win?”
The old Cherokee simply replied, “The one you feed.”
June 12, 2017
A lovely sunny day for John’s 76th birthday. We went in the morning to see the movie My Cousin Rachel at Castle Hill, after seeing a great performance from Richard Gere in Norman yesterday afternoon. Out of the two films it is the character of Norman that still intrigues me. We followed the movie with a short 2 kilometre bush walk in the nearby Excelsior Reserve in the afternoon. About 5pm Dan rang so the children could sing Happy Birthday to John, of course he was pleased about that. Unsurprising in the light of past experience that there were no calls from those closer. Barramundi for dinner, then as Monday is my TV night, Masterchef, Four Corners and so to bed.
June 13, 2017
Bussed into town first thing to go to ICAC, Iman Sharobeem is back on the stand. Counsel assisting is getting too sharp with her, badgering in tone, it is unnecessary. He has all the power and it doesn’t reflect well on him that he vents his frustration. Even though her constant denials would make anyone want to bang their head against a wall, he should know better than to give in to his emotions. Too young to have watched Perry Mason, that’s his problem. The Commissioner cut in a few times and asked her a question calmly, perhaps trying to show the counsel how it’s done, I am liking Reg a little more for that. How do you not notice that you have money amounting to $80,000 in your account that has been wrongly reimbursed to you over years in hundreds of transactions from $30 to $9000, that is the question. I suspect I know the answer.
I may have to go to the Energy Ombudsman after all. After telling me I have credits in both accounts, gas and electricity, they are now saying that was an error and I have none, despite the fact that they gave me amounts to the last cent and asked if they should send a cheque or do a bank transfer. Bizarre.
My attempt at growing aquilegias from seed appears to be fruitless, 21 days to come up they said but it is more than 28 and I have 4 more packets of various flowers to sow. Not happy at all, a gardener I am not.
June 14, 2017
I am stunned and feel sick in the guts at the sight of the London fire. Just seeing it on TV is deeply shocking, what it must have been like to see it in person is more than I can comprehend, before we even get to the victims. Obsessing with trivia is sometimes the only answer, so…..
Waited in all day for my Kenwood Chef to arrive by courier as promised yesterday. Tonight I discovered it was there at the depot, but someone read the note ‘deliver by Thursday’ and then held it back as they thought that meant ‘ deliver on Thursday’. I couldn’t convince the native English speaker that there was a difference, so now I am tied here tomorrow as well. Went to the accountant but she was late home so I spent an hour waiting, though as usual I was well early, so partly my own fault. Packed my bag for Wagga.
John has just phoned to say he feels sick and has a temperature, so maybe the bag for Wagga will be unpacked in the morning, let’s see. He’s not now on the regime of an emergency department trip for a temp, but it is concerning nonetheless. Oh, the fire, I can see it in my mind’s eye now, I can only hope some succumbed to the smoke before they were even aware of what was happening, too awful to imagine otherwise.
June 15, 2007
John is still ill so he came to my house and then on to see Bob in the late afternoon. Bob decided to run some blood tests and said to come back at noon tomorrow. John worsened and was still feeling cold so he went to bed at 6.30 with a hottie (a water bottle, not me). About 9pm we got a call from a doctor at the pathologists who said he needed to go to hospital NOW. His white blood cells and neutrophils were ‘through the roof’ and in his opinion John had either septicaemia or a ‘massive return of the lymphoma’. I didn’t want to take him to Westmead so I got him into the car and drove into town to St Vincent’s where all his records are available.
I parked in our usual spot when going to the hospital but when he got out of the car he was unable to walk due to pain and immobility in his knee. This was a totally new symptom, but at least it gave a hint as to where the infection originated. Had to drive him right to the doors of emergency, where he was admitted pretty quickly using the yellow card we were given by Nada’s office last year in order to jump the queue in the event of any infection. I left there at 1am, after they had done more blood tests and he had had a detailed examination from a doctor who said a few things could be going on, but the most urgent was a septic knee. This is the one that was replaced over two years ago, so whether this is due to low immunity to infection, signifying a return of the lymphoma, or just bad luck, remains to be seen.
June 16, 2017
This has been a pretty awful day. I rang John early and he was still in emergency but waiting on a bed soon after. Then I rang Dr Hamad’s office at the Kinghorn Centre but she is away, so I spoke to someone on the haematology team who asked if anyone from their department had seen John overnight. I told her they hadn’t, so she organised a visit which happened soon after. He has ended up in an orthopaedic ward (I was hoping it would be in a haematology one) where they took a fluid sample from his now badly swollen knee. They had him on antibiotics and morphine, but without a definite diagnosis.
He positively screams if they touch his knee, despite the morphine, yet the sample came back negative for bacteria. They are not sure quite what is going on, a virus was suggested by one doctor, but said to be unlikely by another. If they had found bacteria then the antibiotics would have been targeted rather than a scattergun approach. So, is it a bacterial infection, a viral one, some weird and wonderful byproduct of lymphoma or something else altogether? I don’t know, but when I left tonight his temp was 39 degrees, he had pain and no firm diagnosis has been made, all of which scares me shitless.
June 17, 2017
A big day. John rang me at 4am and said he was returning the call I had just made to him, nooo…….not me, morphine dose recently I wondered? Feeling pretty down about everything and after speaking to Carol decided to accept her invitation to go with her to a Film Festival screening at 2pm. I bumped into Terry and Jude at the festival but didn’t have time to chat, except to tell them that John was in hospital. It was an excellent film by a Palestinian which was funny enough to change my mood for the better. Bussed to St. V’s and was surprised to find Terry, Jude, Stephen and Deborah all at John’s bedside. He is the same, no better, no worse, whatever that means. I tried to see a doctor to ask about culture results but didn’t succeed, even though I was there a long time. No-one from haematology had been back to see him, sigh, I wish they were more involved.
Stephen, Deborah and I went for a meal after visiting at Eat Thai nearby and we were all happy with the food. Then on to try the new ice creamery up the road, I couldn’t resist the flavour on special, Impeach Him, a mix of amaretti biscuits and whisky through the icecream. Walked down to Kings Cross Station to the city and bussed home arriving about 10.30pm, wishing I had suggested that S and D come home with me and then in to see John again tomorrow, just not thinking.
June 18, 2017
Drove in to the hospital first thing after John told me he had had night sweats during last night. Every time we have been to Nada she asks first up ‘have you had any temperatures, shakes or night sweats?’ The answer has always been no, but now in the last few days he has had the trifecta. It is not a good sign.
John’s resting pain levels have decreased slightly, but he suffers from restless leg syndrome and his legs go into spasm regularly, increasing the pain level massively each time. At its worst it happens every 17 seconds, I know because I’ve timed it in the past. So it makes me very angry that a nurse told him yesterday that there is a drug that treats both nerve pain and restless legs and would be much better for him than the morphine he has been on since Thursday. Robert mentioned the same drug when he rang last Friday night but do you think I could get anyone to consider prescribing it? No, it was weekend and he hasn’t seen a doctor from either orthopaedics or haematology since Friday morning. The nurses can’t change the meds, though they want to, they suggested it! It is beyond cruel to leave someone in severe pain because it is a weekend. When I was in RNS recently I was visited by registrars on both weekend days, perhaps catholic hospitals have a different view of suffering, I can’t explain it.
I will be ringing Nada’s office at 8 am tomorrow to see what can be done and just hope I am there tomorrow when a doctor appears. If he can be moved to a haematology ward, so much the better.
June 19, 2017
It is actually 1.15am on the 20th and I am having a dinner of hot milk as I write this. Left here on the 7.30 am bus this morning to beat the doctors’ rounds but orthos must be early birds as they had been at 7 am. However I found the doc easily, it is like a different hospital today and he said John would be having surgery to clean out his knee this afternoon. I had rung Nada’s rooms but she is in Switzerland at a conference so I asked for a visit from her haematology registrar. The new drug for nerve pain will be prescribed from now on. It took two nurses and me 10 minutes today to get him out of the PJs he’s had on since last Thursday because the pain was so great if he moved and it shits me that he has suffered so much for days for lack of a doctor’s visit and a minute to write it up. Not good enough.
He went to surgery at 3pm for a 30 minute procedure so I wandered over to Darlinghurst Court to see if there was any action and listened in briefly on a sentencing hearing, but I was only there for 20 minutes as it ended prematurely for very interesting legal reasons that I can’t be bothered typing at 1 am. I then decided to read in an armchair near the lifts because one of his roommates has a voice like a chainsaw and I was in danger of ending up in the same courts for murder if he shrieked with laughter on the phone just one more time. I waited……….and waited………..and waited until hours later I asked the lovely night nurse Diane to ring recovery for me. They said he couldn’t come back to the ward yet as he had had atrial fibrillation and low blood pressure during the operation and a high temperature and severe pain after it, so 6 and a half hours after leaving he returned, on oxygen but somewhat improved. I couldn’t stay more than an hour as I needed to ensure I got the last bus home, but he was well looked after when I left and chuffed with the lovely bunch of flowers that had been delivered with a card from Carly, Davina, Louis and Millie. Now for some zzzzzzzzzzzzzzzzz.
June 20, 2017
John rang first thing to say the docs have said his knee may need to be washed out again if the infection continues and worst case scenario is replacing it with a new knee, aaagh. He has said before that if he had known how bad the pain and the rehab would be he wouldn’t have had it done at all, so the thought of having it redone is terrible. But let’s not think of the worst case at this stage.
I did myself a favour today, started later than usual and went to town by car via KOI Dessert Bar at Ryde. Seeing I was there I was forced to have a dessert, funny that. With a pot of tea I had a jam jar of Watermelon Jelly with Dehydrated Rose Petals and Chia Seeds. It was topped with a layer of cream, then a layer of crumble, then strawberries and a fresh flower, I hate giving a dish a 10 but I have to say I can’t see a way to improve it, so 9.9 perhaps. Reynold is a bloody genius, full stop.
John looked much better today, the physios got him into a chair so he sat up for the first time since last Thursday and ate his dinner in the chair too. The infection diseases doc came and said the bug is Staphylococcus aureus, good old Golden Staph, at least it is one that is responsive to the antibiotic he is getting intravenously. Here’s hoping it is all up from now on.
June 21, 2016
Well the up didn’t last long. This morning the team decided that John needed a PICC line put in, a more permanent option to the cannula in his arm for the antibiotics. It goes into a vein in his upper arm and threads in to above the heart. It was done this afternoon and was an obvious indication that this will not be a short process.
The infectious diseases doctor discovered a heart murmur yesterday and brought back a team today to listen to his heart. I watched his calm Buddha-like face as he listened and his eyes slowly closed in concentration and decision. Now he will be having an ultrasound to see if the Staph has spread there too, possibly to his heart valves. Later in the day he started to feel ill again, had a headache and felt cold. It was another temperature spike, they seem to happen randomly once every day or two.
Then he finally got a personal visit from the ortho, John Rooney, with his team. He is a comedian, but easy to talk to. I asked how long he will be there and he said ‘ask me in a week’ but he has been there a week now and it is the first time we have sighted him in the flesh. I then tried another tack ‘how long do you think he will be on the antibiotics via the PICC?’ Six weeks, he shot back unequivocally, but in that time we may need to operate again on his knee and do the equivalent of putting a gurney into the joint. At least he is not evasive, which is the worst thing in a doctor, assuming competence of course, you can handle the answers if you know they are honest ones. Tough times ahead for this beloved man who has suffered so much already and doesn’t deserve any more.
June 22, 2017
Had a later start today and went to John’s flat to tidy up and pick up a couple of things. He was out of bed in a chair and took a few steps on a walking frame, so that is a huge improvement. He had three visitors today, Rafe, then Jane and her sister Angela, who was over from West Australia. The only negative today was his usual 4pm high temperature. The driving gets to me as I seem to be coming home in the evening peak, must try to start and finish earlier. Will bus in tomorrow for a change.
June 23, 2017
The travelling times are hard to the hospital, the best time by car last Sunday was 40 mins, the worst at peak hour was an hour and 40 mins, which means sitting in traffic barely moving for an hour. Went on the bus today but it still took over 1 and a half hours to get home, the M2 is slow on a Friday afternoon, even for the bus. I seem inordinately tired this past couple of days, starting to think it is perhaps mental more than physical. Perhaps it is the realisation that we are in for a very long haul, at best. Can’t he just come home and we can have an Ottolenghi dinner and mooch in front of the fire with our books?
John asked the doc about his afternoon high temperatures and he said it is due to the drop in cortisol in the blood allowing the bug to gain temporary ascendancy, not comforting that it is sitting there just waiting to go back into battle as soon as his immune system flags even slightly. Also he said that they are watching his blood CRP levels every 2 days, if they keep falling we are sweet. If they plateau they must operate again, this time opening the knee up more fully.
He has a young man in the 4 bed room now for a change, hit by a car after watching a big rugby match last weekend. I told him my theory that sport isn’t good for you and got a bit of a laugh. Broken ribs 4, broken vertebrae 3, broken ankle 1, bleed on the brain and bruised spleen, apart from that and a bit of lost bark he is fine. The older man who went home was a chef who had worked behind the scenes on Masterchef and in Maxim’s in Paris. He told me Princess Margaret was very bitchy, difficult and a bit of a lush and King Farouk wanted something unusual so he cooked a veal escalope rolled with prosciutto and served with a cream cheese sauce. When he complimented Gino on the meal he asked if the pork had been a problem, Farouk winked and said “I’m in exile.” The things you learn.
June 24, 2017
John looked a lot better today. Doc came around (where were they all last weekend when he really needed them? grrrrr) and gave him a timeline. If CRP in his blood plateaus they do another op to wash out knee, if it plateaus again they take out the knee replacement and leave it out for 6 weeks while giving IV antibiotics 4 times a day, then they do a new knee replacement. He said getting it out is like separating two pieces of balsa wood stuck with superglue so they can’t help but damage the bone, therefore a second replacement is never as good as the first. If that fails, and there is a 10% chance it will in a healthy patient, then………….well John understandably didn’t ask the question, but he believes it will mean that he and the leg part company.
Jane and Boris came to the hospital on their way to lunch at Bennelong for their wedding anniversary, very envious as Peter Gilmore is chef there now which means it will be amazing. I have eaten his food at Quay twice and was stoked both times. Jane texted some shots of the meal and said they were suitable impressed.
June 25, 2017
Went in to the hospital early today and left late this evening to go to Ann’s birthday party at The Ranch Hotel in Epping on the way home. I made a chocolate cake with strawberries and cream and a raspberry sauce as our gift and carried it into town in the car packed in a mocked up cooler made of a milk crate and cooler bricks. I ponder why a top restaurant near the hospital, a Tavola, which has awards from Italy for its food has a top price of $37 for its mains while a pub in Epping can ask and get $39 for a steak and is packed? I had the $12 pensioner special as all the meals were huge, quantity trumps quality every time. The clients there would probably think a Tavola too expensive because it looks and is classy. One of life’s little mysteries.
John was pretty exhausted when I left, he had a big day, sitting out in the chair for a while and having visitors as well. He eats like a sparrow now, the middle out of a sandwich is his lunch. He is not himself in so many little ways.
June 26, 2017
An 8am bus into town got me to the hospital by 9.30, which was good going. John’s doctor canvassed the possibility of his going home at the end of the week if his CRP continues to fall. This is great news, but throws up lots of questions about equipment such as crutches, a wheelchair, raised toilet seat, shower chair etc etc as he can’t walk nor even get up out of a chair unaided. But the bigger issue is how he gets the IV antibiotics four times a day. The staff say that getting a community nurse to come in that often and exactly on time is impossible. I am capable of doing it and have done so many years ago, but I am not suggesting that as an option if other arrangements prove possible. The doctors said that John must impress on the nursing staff the importance of good sterile procedure each time it is done, perhaps they have scared me off, I don’t know. I think I was more confident all those years ago when I was dealing with a terminally ill person than I am now doing it for John when for him it is so critical. Still, I will do what needs to be done to get him home.
Walked down to meet Carol at 12.30 and went to Bodhi’s where she treated me to an unusual Buddhist vegan yum cha lunch sitting in the sun in the shadow of St Mary’s Cathedral. It was a lovely break from hospital duty and it was good to try dishes far from my usual experience, including many kinds of dumplings filled with pumpkin, beans, mushrooms and lots more. The outdoor setting under fig trees was delightful.
June 27, 2017
Late yesterday John’s physio Emma told him she would veto John’s release unless he could at least walk with a stick as she thinks it is too difficult and possibly dangerous to manage him at home when he can’t walk. But she did suggest he go to an orthopaedic rehab at Ryde till he can. But today the big doc, Rooney, came by and said he wants to avoid his going to rehab and will see how he is on Friday with a view to release. So who knows who will win this one? I suspect the doc will. This does not mean John is out of the woods, just that he would be monitored here instead of there, still checking his blood results regularly for deterioration and possibly another op in that case.
I have been thinking about the lovely young man I met at Ann’s party, only in his 20s but so warm and engaging. He is a harpist and harp maker, who plays professionally where he can and often busks as well. He had that amazing ability to relate to everyone from 7 to 70, literally, as that was the age range at the party. I think warmth trumps everything for me in listing the attributes of a person and he had it in spades.
June 28, 2017
I took my first day off from hospital duty today to catch up on a few things, including finalising a booking to go into hospital myself for the day on July 10 for a follow-up examination in the ulcer saga. I was going to cancel but we don’t know how long John will need care so I might as well get it out of the way. Also did a bit of a search for invalid aids needed when he comes home and discovered Baulkham Hills has a not-for-profit hiring service for such things, $10 deposit and $2 a week per item (if you can afford it, they say). That’s the sort of service we need for all sorts of things and I think we can afford it if we tighten our belts. Socialism lurks in the Hills, who knew?
The doc and the physio have called a truce this afternoon and he comes home Monday if the next two blood tests are ok. He also said that St Vincent’s uses a different type of knee replacement to RNS where his was done, so if it gets worse again and needs more surgery they think he should go back to the doctor who put it in, “it’s his knee” he said. We are fine with that as he did a good job originally. Then later the infectious diseases team came around and John asked what the chances were of the 6 weeks of antibiotics killing the Staph off. Virtually no chance, he said, as it is in the metal, but if that is the case he suggested he can give John drugs for the rest of his life to suppress the infection as an alternative to surgery. John is unsurprisingly excited by that prospect. Surgeons equal surgical solutions, medicos equal medical solutions.
June 29, 2017
Ha, realised I don’t need to do a stocktake of the shop tomorrow, that’s a relief. Angela asked me last week if I was getting used to retirement, but since all hell broke loose straight after I ‘retired’, I was a bit flummoxed for an answer. I don’t feel ‘retired’ yet, aren’t you supposed to get a toy boy or go on a cruise or learn Swahili? Perhaps I am more like a retired Lladro figurine, in the sense of withdrawn or disengaged.
We had a visit today from the exit team (no, no, not the team with a nitrogen canister in tow, that’s the Exit team) who came to plan John’s discharge. It comprised the coordinator, a social worker, a nurse, a physio, an occupational therapist and a doctor, phew. They decided he won’t be able to walk by Monday and are now talking about Wednesday, so Emma the physio won that contest in a lay-down misere. His nurse today who is very competent, has a motley variety of tattoos of things like a poison jar and other symbols with negative connotations. I don’t geddit, but then I don’t need to.
June 30, 2017
I arrived on the ward to find Giles talking to RNSH to organise ‘hospital in the home’. I explained again that he will be going to Baulkham Hills and that is way out of their area. Where is that? he asked. Near Castle Hill, I explained but he looked blankly, obviously an eastern suburbs boy. What is a big hospital out there? he said, as if we were in the red centre. Westmead, I replied and he then queried whether they would have such a service. Ahem, it is way over double the size of St Vincents at 975 beds. Sydney really is a city of villages, many unknown to the others.
Shortly after, the infectious diseases team came with the Zen-like calmness of Dr Ian Wong. He explained again about John hopefully avoiding surgery by going on antibiotics multiple times a day for the rest of his life to keep the bug in check, but probably not beaten, as it is in the metal of his knee. I asked if our GP would supervise that and he said no, to come to see him the day before the last IV treatment on July 27 and he will decide the drug and the dosage. He is a lovely caring person and we are very lucky to have him on our side. He looked at me and said ‘he’s had enough hasn’t he?’, I nodded and he said ‘I will do my best to save him any more suffering’. I could have hugged him.
Walked down to Elizabeth Bay to Fran’s new unit in the evening for our book group. It is a lovely space, designed by a gay architect, so not surprising. Very modern in some ways with a lot of mirroring, yet with classical touches in the light fittings and the marble in the kitchen and bathroom. It was a good meeting and I was very lucky to get a lift home to the door with Carol and Jack.
July 1, 2017
Went via John’s house to collect more stuff he will need here after Monday. He is improving every day and has mastered walking with just a stick, albeit with some support. He is determined to leave Monday and will do whatever needs to be done to make that happen.
His roommates have turned over a few times, with the current crop including a young man who fell from a third floor balcony onto concrete and a 60 year old farmer from Coffs Harbour way who took his wife to Fiji on their first overseas trip. After two days he fell ill with diverticulitis, returned to Sydney trying to mask the intense pain so he could be treated here. He went straight from the airport to St. V’s in an ambulance and insists he will never leave the country again. 100 patients, 100 stories.
July 2, 2017
The surety about Monday’s discharge has faded a bit. John complained of knee pain in the night and had to have Endone, so I managed to corral Jahan who came to see him immediately. ‘That’s interesting’, he said, ‘as John’s CRP went up today for the first time since he came to hospital’. It had been graphing downwards every two days when they do the blood tests. So now we are looking at release ‘maybe tomorrow or maybe in a day or two’. It is amazing that I could get a doctor today within minutes and last weekend when he really, really needed care, it was impossible to find one. In retrospect I think I should have thrown a mickey in the foyer, then demanded a doctor when security came.
I went to John’s flat yesterday and then again this morning to look for a list of things he wanted. Tonight he remembered a few more, so I went twice today. A random assortment, Sorbolene, The Saturday Paper, his superannuation papers, a book by Seneca……….like what you grab when fire is on the horizon. At least he has started to show interest in reading again, to some extent anyway.
July 3, 2017
Well the discharge didn’t happen. It was decided that another blood test tomorrow was needed to decide if the desired downward trend of the CRP results is happening. Then it was discovered that the Baxter bottles of antibiotic had not arrived, so that was the end of going home. Westmead Hospital rang this afternoon to confirm that a nurse would come tonight……….no point in that as he ain’t here, so obviously St. V’s hadn’t communicated the change of plans. Now we try again for tomorrow and hope that someone tells Westmead.
I took the opportunity to go to Windsor, return library books and pick up some split gerbera plants that Brian has been trying to give me from his garden for the past weeks. It seems a high priority for him but is small cheese in my world at the moment, but thank goodness it is done now and he is happy. Went to pick up some equipment from the community hire service, but they only open from 9.30 to 10.30am and I was way later than that. I shall try again tomorrow morning. One foot in front of the other, that’s all I can do right now.
July 4, 2017
Today was another waiting day, but eventually it all came together. In the morning I collected equipment from the hire service, then in the afternoon Fran delivered the wheelchair she had offered so we were right to go. Discharge was to be 2pm, then 3, then 4 and at 4.06 I got the call to come in. I asked them to wheel John down to the 5 minute parking area and that worked a dream. So we battled through the peak hour traffic and 10 minutes from home a nurse from Westmead rang to say she would be here in 15 minutes, and she duly was, just after I got John inside. She asked if anyone here smoked or had a pet or had weapons in the house! So my fridge is now full of Baxter bottles of antibiotic, which he wears in a harness 24/7 and a nurse will come each day to change them, as long as I agree not to fire the bazooka.
After dinner now and we should be sitting by the fire, except that today of all days the gas fire suddenly went pop and died, taking out a few power points as well. The place I bought it from has one technician who is booked out for 4 weeks, so now I need to find someone to fix it, which is a bummer as it had a 2 year warranty which has just expired. I only turned it on for winter last night. But all things considered it has been a good day.
July 5, 2017
Another big day with the PACC (Post Acute Continuing Care) nurse arriving at 9.15am and leaving at 10.30, having changed the PICC line dressing with great aseptic technique involved. It reminded me of doing it for Karl decades ago and brought back to me what a nail-bitingly stressful procedure it all was. I am so glad we have these capable nurses coming and glad I didn’t put my hand up, just in case they had accepted. The Baxter vacuum bottles unfilled, before the antibiotic is added, before the nurse’s wages, are over $100 each and one goes into the bin each day for the next month. Scott Morrison has his work cut out balancing the budget with John around.
Normally simple tasks like showering become a trial, not only for the fall risk but juggling the Baxter bottle with the line wrapped in clingwrap and sticky taped top and bottom. So what with breakfast, drugs, then the nurse and then showering it seems the morning is pretty much a write off. It was like that in the hospital too, so nothing new there. I do worry that after 3 weeks on IV antibiotics his knee is still very swollen and hot to the touch, so the drug is keeping it under control but a long way from fixed. Patience, watch and wait.
July 6, 2017
Still puzzled about why they kept John an extra two days to recheck his CRP levels and then didn’t do the test. Anyway nurse has sent blood sample off so we should get the result tomorrow. In my humble opinion, his knee looks and feels worse since the weekend. It is more swollen, as is his leg now, and much warmer to touch than the normal one, not good signs. We see the orthopaedic surgeon next Thursday and will be glad of an expert opinion, even though John doesn’t want more surgery.
I took him to the GP tonight and he told Bob that he wishes he had never had the knee replacement. It isn’t a case of hindsight, he said that right from the getgo, that the pain of the rehab and months after was so much worse than the pain he already had and being given an Endone before each gym session was proof that the physios knew what they were inflicting. Now finding out that infections just love strange metal parts has made him angry with himself for taking up the suggestion that he would be better off with a new knee. He intends to tell the surgeon that next week, I will lock my jaws.
Heather came with a stem of orchids, fish and prawn skewers to cook for dinner, a salad and a tub of fresh seaweed, all of which we demolished tonight. She is a bonzer friend to us both.
July 7, 2017
On the day John went to hospital another earth-shattering event occurred…….my new top of the range Kenwood Chef was delivered. But I haven’t baked a single thing for over 3 weeks (apart from some goat cheese biscuits for book group and they didn’t need a mixer), so it hasn’t even been fully unpacked and used until today. I only made batter to do pancakes for breakfast tomorrow, but still it means that the machine turns on and works. Can’t wait to try it out properly soon.
Last night I decided to cancel the gastroscopy I am booked to have on Monday in light of John’s lack of improvement, I felt I couldn’t be sure he would be here and not back in hospital. But the newest CRP result today showed a fall in the numbers, now it is only 20 times normal, and John’s friend who is going to to drive me to and from hospital has said he is happy to watch over John on Monday while I am away as well. Last time I had this done two month ago, John cooked me a lovely fish dinner after picking me up, but this time I am making pumpkin soup in advance so we will have something easy and good to eat that night. Tomorrow arv he wants to go on a drive just to get out so I will pick up more clothes from his unit, sadly he would never make it up the stairs, but the outing will do him good and we may have afternoon tea somewhere nice if he is up to it.
July 8, 2017
Our nurse this morning, Clara, thought her blood pressure machine was faulty when it recorded 80/40 but John assured her that it was as low as that many times in hospital. ‘In the ward that is low enough to call the emergency team’ she said, but that never happened at St. V’s. However with a few long drinks of water it came up to low but satisfactory. I aimed to cut the time for showering, moisturising and dressing today but we were finished at 11. 45 as per usual.
Went to John’s and he struggled up the stairs to help me with a long list of things he needed from there. Then we went to Balmoral and had a snack lunch overlooking yacht races on the bay, it is such a wonderful spot. Carol and Jack came with a BYO dinner of a whole baked pumpkin filled with prawn curry, it looked and tasted amazing. I had four citrus crème brulees in the fridge which I had made and they just needed torching so that was a spot of luck. It is wonderful to have them as friends, the world is full of givers and takers and they are certainly the former.
July 9, 2017
No commitments today except the nurse, so I managed to catch up on the boring stuff like getting the washing done and cooking soup for Phil to give John for lunch tomorrow, very exciting. I am in the odd and rare situation of not being able to concentrate enough to read anything substantial. I was able to read ok at the hospital but can’t now, so I am slipping well behind in the book stakes, with the essays for the book group being the last thing I read. I think it is partly that there isn’t a block of time with no interruption, but also too much going on mentally and physically. I dips me lid to those who are caregivers fulltime for years.
July 10, 2017
Another big but successful day. Up for a 6.30am breakfast then nil by mouth for the gastroscopy. Got John up at 8 and gave him pancakes with maple syrup for breakfast. We got the showering done early, just finished that when our favourite nurse Clara arrived, she was unimpressed that his BP was now 80/35, but impressed that his swollen leg is down a bit. Thank god, she said, with a sideways glance at my Buddha. I didn’t bother enlightening her that I bought it for its beauty, not its spiritual connections. Phil came late morning to sweep me off to hospital and then came back to heat up the soup, make the toast and give John his lunch. They solved a few world problems in the afternoon.
The gastroscopy went well with the lovely Edwin and the lovely Pran, a pair of good lookers apart from their medical expertise. The result was that the ulcer has healed but left a big scar (I have the pics to prove it) which indicated to Pran that it had been deep, so he did more biopsies to be sure it wasn’t malignant. I don’t need to see him again unless the biopsies are dodgy or the symptoms return. But he says I will need to stay on the current drug for life as he believes the ulcer was caused by the Sjogrens Syndrome and therefore will return if counter measures aren’t taken. Good to be seeing the back of him, pretty though he is.
Phil picked me up in the early evening and life returns to normal. John said the hospital had rung, worried about his blood pressure, and said they would send another nurse tonight to check him out. She duly came and did his obs, happy there had been a slight improvement. Another dent in Scott Morrison’s sums.
July 11, 2017
Well Clara told us this morning that she has had her knuckles rapped by the docs at Westmead for not reporting John’s very low blood pressure earlier. They said they would have recommended a return to hospital, so we are very glad she didn’t, as it has come up a little bit now. Clara was here well over an hour today and said we must go to the Infectious Diseases department at Westmead tomorrow afternoon to see a doctor. We already have the orthopaedic surgeon on Thursday. So I rang Dr Ian Wong, the infectious diseases specialist he was seeing at St. Vincents to check if this was appropriate seeing John is his patient, but he said he is caught as now he can’t direct the nurses, change medications, extend the antibiotics or do anything really, as he has no say at Westmead. John’s CRP has gone up again today and Ian says we need to have an opinion on what to do next. Groan….. I have felt out of sorts all day over this, it is now 4pm, I am feeling tired and cross and trying not to take it out on John. I thought having him at home would be simpler, but having two hospitals involved is proving problematic.
Addendum, 6.30pm: After a bubble bath with a fragrant Palm Beach candle burning on the side (no glass of wine as per post-anaesthetic instructions) the world looks better. Now I think the new doc tomorrow will be a ripper, I like her already. Just got a call now to say another nurse, Thomas, will be arriving around 7pm to check John out yet again, can’t fault their commitment, that’s for sure. Sans makeup and in my dressing gown, I welcome Thomas as I write.
July 12, 2017
I took the opportunity this morning to get the groceries while Thomas the nurse was here, good strategy as I managed to walk back in the door just as he walked out, they are usually here an hour which is all I need. I am reluctant to leave John alone if I can avoid it. He is looking forward to watching football tonight for some odd reason.
Well I needn’t have worried about the infectious diseases doctor at Westmead, she was excellent and of a mind with Dr Wong. She says there is no chance of getting rid of this infection completely without more surgery and no guarantees even then. She also indicated that this infection in a replacement joint is not that uncommon. She understands John’s reluctance to go down the surgery route and said we just need to get him well enough to enable oral antibiotics to keep the Staph at bay into the future. Let’s see if the surgeon is of the same opinion tomorrow. “Have scalpel, will cut” I suspect will be his attitude, but I hope I am wrong about that. It will help if all the docs are on the same page. John found Westmead’s polyglot patients somewhat daunting I think and muttered “don’t bring me back here for physio” as we left, later referring to the hospital as “a grubby maze”. We go back next Wednesday to see the same doctor, but I won’t bring that up tonight and spoil the football fever.
July 13, 2017
John had an exciting treat this morning when a Lay-Z-Boy leather-covered electric recliner chair was delivered as a gift from nephew Stephen and his wife Deborah. It not only reclines, it has a built-in footstool and a lift device to get him up out of the chair. We can now return the hired armchair as this one is his for keeps. It seems to be getting a practice run as we speak, if you press the wrong button I think it could take off vertically, like a missile.
This arv we saw the orthopaedic surgeon Andrew Ellis who did John’s knee originally and he was beyond excellent. He agrees that having life-long antibiotics is a valid option, but says that with CRP levels as they are now it would only be a matter of time before it erupted through his whole body again. He also agreed that the op to wash out the knee was never going to be a cure. So he suggested John give it two more weeks to allow the treatment to work and then weigh up the options, in a three-way phone conference including Dr Wong. But he thinks the knee will have to come out to give John any decent chance of recovery, but he hopes he is wrong. I asked about the odds of a cure with the knee removed and he said “somewhere between slim and 80%”, the 80% being the recovery rate in a healthy person and slim being the infectious diseases doctors’ assessment. Too many variables to be any clearer than that, but he said at least the ID people would then have a chance of getting oral antibiotics to work if they were not fighting infection on the metal. It would be done at RNSH, not Ryde as last time, because Andrew would need everything going for him, all the bells and whistles, to do this operation, hopefully with a CRP of under 10. I got a kiss on the way out, much to the surprise of those in the waiting room, which only endeared me to him more. Now he has started a trend, they will all want it.
July 14, 2017
I sent off an email to Dr Ellis first thing to ask a question I had thought about overnight and which had kept me awake. Within half an hour he rang me, though I was expecting an email in return, said it was an important question and answered it in detail. He has read the manual on how to be the perfect doctor.
Martha and Phil came over after lunch and had a cuppa and cake with us and filled us in on some of their USA travels. They have discovered that there is a bus service which links our homes pretty well so it is easier now for them to pop over. Michelle had rung offering to cook dinner for John, me, Michelle and Kev, which I gladly accepted. I did a Vanilla and Pomegranate Cake for dessert not knowing that she had baked a French Apple Tart as well as the chicken main, so we had both desserts. John and Kev then watched the football while Mish and I chewed the fat. Kev and I polished off most of a bottle of Peterson’s 2009 Shiraz which went down very nicely thankyou.
July 15, 2017
Another lovely new nurse today, Joe from Kerala, and we will have him again tomorrow. Do you see many of these infections in artificial joints? I asked. Oh yes, we see quite a lot he said, and sometimes they take a very long time to treat. This issue isn’t common knowledge, patients are told that infection is a risk at surgery, but not the fact that it is extremely difficult to treat once a bug gets into the joint via a blood-borne infection and it could be 5, 10 or 15 years after the initial operation. More disclosure of the risks is essential.
Well I seem to have solved the small problem of getting out to do the shopping, I take John with me! We got a park right at the entrance to Castle Mall, he managed the walk ok, found a seat while I did my business and all’s well in Cross St. After the successful shopping trip we threw caution to the wind and went down to Erskineville to see Dav and Millie for a cuppa. I think this has been our most successful day since John came home from hospital. Onward and upward.
July 16, 2017
After our cheering morning visit from nurse Joe from Kerala, we had the day to ourselves, a dies non. We feel we are perhaps turning a corner, John was a bit more mobile around the house, a bit happier in himself, content to sit and fold the washing and looking forward to going out to lunch tomorrow. It is the weekend of his clerical class reunion, held once a year for those remaining, both priests and ex-priests, some from interstate now. He cannot be part of the celebrations this time so the group is meeting here tomorrow and taking him along to lunch at Kinn Thai restaurant in Castle Hill. I was invited but won’t go, he has enough time with me at the moment. He also meets each month with a different group of ex-priests who are not from his year and while he was having chemo they had lunch here each time, which I guess they will do again now this rotten luck has befallen him.
We had a bit of fun this arv sorting my extensive scarf collection into winter and summer, then into shawls, large, medium, small scarves and theoretically a little pile of rarely worn ones to dispense to charity. Well I agreed to bin one with a huge hole and John laid claim to two woollen ones, one grey and one brightly coloured, as he is feeling cold all the time since he has been sick. But each one has a story and I wear them all, so they were carefully packed away again into their three drawers. I had culled them a year ago and sold some in the shop, so now I only have, ahem, 85 instead of 103.
July 17, 2017
A day of contrasts, firstly a short blackout followed by my first experience of a brown out. The power came back on, but not strongly enough to operate the appliances, for example the light was on in the fridge but no motor, the same for the aircon and the gas fire which has an electric starter, one bathroom fan worked, the other didn’t, all very odd. Next door had all their lights working, but dimly lit, so it affected different places in different ways. I was panicked a bit about how to keep John warm so I piled blankets on him, but it all resolved an hour or so later.
Just after the heat came back the first of the party of 10 priests and ex-priests arrived. I had suggested baking some nice goodies for them, but John wouldn’t hear of it, saying they would only be here a few minutes before going to lunch. Of course their arrival was spaced over some time and they were here for an hour and a half or so. They were happy to have tea and coffee, so I served the remnants of leftover cake, the dregs of a pomegranate cake or stale lemon curd cake were the choices, both ready for the trifle tin. I should have words with John about letting me do my own thing regarding baking. The day ended somewhat sadly though, his CRP up 14 points.
July 18, 2017
This morning’s nurse was a new one so I again asked the question about how often she sees infected replacement joints. ‘Oh all the time, hips as well as knees, but hips are easier to treat successfully’ she said cheerily, echoing nurse Joe’s response to the question. It makes me so angry that we were never told, especially when he had a history of lymphoma and immune suppression. Perhaps Dr Ellis understands it too, which is why he is being so damned sympathetic. We headed off to renew John’s disabled parking permit, which is vital to us now, and to pick up the book group choice from Windsor Library as the copy in the Castle Hill Library seems to have been nicked. It is unlikely that I can go to the meeting but I want to read it at least and perhaps email my review. Had sushi at Windsor and then came straight home, both exhausted by the effort of it all. I can understand John’s reason for being so tired but mine is a bit less forseeable. Everything that John did so thoughtlessly, like having a shower, getting ready for bed or going out in the car, is now planned, thought through and carefully executed. Less structure in our lives would be really good.
July 19, 2017
I try to keep focussed on the minutiae like keeping the house tidy, the washing up to date, meals on the table and making sure we have baking done for us and for guests. But today we were forced to face the reality, which we already knew but were avoiding: the antibiotic is not working well enough. Had an appointment with the infectious diseases doctor at Westmead this afternoon and after looking at the CRP results and his knee, which is still very swollen and much too warm, she announced that there is no way he can go onto oral antibiotics in a week as suggested by Ian Wong because “the IV drugs are barely holding the infection, so there is no chance oral ones will”. My query about moving to a stronger one was met with a shrug, apparently he is on the best for this condition. It appears taking the knee out is the likely next step, though we are hoping against hope for a late turnaround, but he has had 5 weeks out of the course of 6. Both feeling low and concentrating on what we are having for dinner. Perhaps honey cinnamon pears for dessert will pick us up, though it’s a big ask.
July 20, 2017
Had an interesting conversation with our nurse this morning. She is a Uyghur, one of the minority ethnic groups within China. She talked about the difficulties they have as the Chinese are taught that Uyghurs are trying to take over their country, not that they have been there since ancient times. She has fared relatively well she said as she speaks Chinese language without accent.
We were lucky enough to have a visit from Stephen and Deborah today, they had trained and bussed from Newcastle. Not content with having given John his luxury chair, they arrived with a bunch of fresh herbs from their garden, a large bag of nougat, lots of fresh- off-the-tree mandarins, a Stable Table, a 1000 piece jigsaw puzzle for John to do and a boxed set of 24 CDs of the history of music ‘from Mediaeval to Philip Glass’ to listen to while he does it. Their generosity is exceeded only by their love. I managed to find in the garage a table just bigger than the puzzle, which I will lug up here once I get a volunteer to give me a hand. We had afternoon tea, I had made an Orange and Almond Cake, then we repaired to the comfy seats to nag all afternoon. The only down point of the day (and it is a huge one) was a call from Westmead to say John’s CRP is up for the second consecutive test this week.
July 21, 2017
I was thinking about my fond connection to my scarf collection and it occurred to me that I have inherited quite a few of them. The plain red one I pinched from the hallstand of my dear friend Ray the morning after he died many years ago, a few came to me after the death of my mate Mike from Windsor in 2013 and others from the husband of a client from Roseville, who died leaving the biggest collection of clothes, shoes and costume jewellery I have ever seen one person own, housed in a massive wall of wardrobes in her P and O style home with its sweeping staircase. Her husband gave me quite a few of her scarves, some of them silk, and I still have some of the big 60s clip-on earrings which were her style specialty. Many others were gifts from Carly, John, Deborah and Stephen and these are my favourites, chosen with exactly my taste in mind. Now how could I ever pass those on to charity shops where their stories would be lost? Oh good, I feel fully justified now.
Today I told John I needed to stock up on fruit and veg at Baulko and fish from Castle Hill, so a two-pronged shopping trip. He was delighted to come, even though he slept an hour afterwards, how we treasure even the simplest outings now and get our pleasures from many small things.
July 22, 2017
Well days never seem to turn out as expected lately. Yesterday we did a big shop as we had John’s neighbour and her small daughter coming for lunch today (Thai Fish Soup and Rice followed by Sherry Trifle) and Davina and family coming for lunch tomorrow (I hadn’t cooked for that one yet). But Anne had to cancel this morning due to their waking up with a cold and Dav cancelled this arv for the same reason, which is why we enjoyed trifle for dessert tonight. As our day was now free, I suggested we go to the dreaded Castle Towers to get John some items he would need for hospital, if it comes to that, as we may not have much notice. He bought new slippers, a dressing gown, which looks as if it should be worn by a mobster on a mobile by his massive pool, and six pairs of undies, all of which were colour-coordinated in shades of blue, trust Lowes for class. If it doesn’t come to a hospital stay, all the better, he can celebrate at home in his new togs.
July 23, 2017
John has been very patient in not seeing a movie for the last six weeks, he has been hanging out like the addict he is, so we went to dreaded Castle Towers Event Cinema this morning to see Paris Can Wait. It was deliciously beautiful in its scenery of the south of France and delicious is the word for the food shots, but is that enough? 3/5 for a nice pleasant movie but 5/5 for the delicious Frenchman Arnaud Viard, gosh he is a sort and a half with a personality to match in this film, so worth the ticket price just to watch him for two hours.
The following conversation I recount without comment, I am still thinking it through. Me: Can I please borrow some earphones, I forgot to put my hearing aids in? Event Cinema girl: Yes sure (she hands me a large contraption which has the dialogue in text) Me: No sorry, I just wanted earphones for volume, I don’t need to read the text Event Cinema girl: Oh OK, we usually only use them for blind people.
July 24, 2017
I have been stewing about something since last Friday, so maybe if I write it down I can let it go. My 92 year old friend was sick in hospital last week but is now at home. His Melbourne daughter flew up to visit and his local son has been helping too. Unfortunately my hands were full so I hadn’t been able to visit, but when I rang I was told to contact him through the son, not directly. Then his volunteer gardener and friend turned up to work in the garden and was told aggressively ‘don’t come back, you are not welcome here’. He rang me very upset ‘I am not good enough to sweep up his possum shit for free apparently’. A mutual friend who cleans house for him is reluctant to go when his daughter is there as she is treated like the hired help, which of course she is, but she is a much loved friend of his as well. So what to do? I don’t want to upset my friend, but this is a pattern of behaviour that has occurred a few times before, including many years ago after he had a heart attack when I took meals around and was warned off. Are they afraid we might be included in the will perhaps? Or are they simply possessive? They never mind the help he is given when they are not around. Trying to let it go, but I am still as mad as a blowfly in a bottle, mainly on behalf of the gardener. Funny how typing it out makes it seem easier somehow.
July 25, 2017
I am not superstitious but sometimes coincidences are surprising. For the last few days I have been telling John that his next CRP level would be 51. Seeing the last one was 84, it was a bit of a running joke as that would be a very big improvement. This morning the latest result came in and it was ……….. 51. John has improved physically and psychologically in the last few days, he even drove the car today, but we weren’t expecting such an improvement, perhaps we will get away with antibiotics for life after all. Meanwhile we have started his 1000 piece jigsaw and will have fun completing it.
After documenting the problems with my elderly friend’s children, last night I didn’t wake up worrying about it at all. Now I feel calm enough to discuss it with him rationally, blog as problem solver.
July 26, 2017
I had a phone call from B. at 8am wanting to know when I was coming to see him and commenting that his garden helping friend hadn’t been around either, so that was an easy opening to the tricky subject. ‘Well he can’t come’ I said ‘he has been warned off’. WHAT?? he replied, as I expected B. knew nothing of his son’s interference. So we were invited, not to his home as usual, but to a sushi bar in Windsor for lunch, along with the gardener, pending B’s touchy discussion with his son. He is vulnerable and needs to tread carefully so as not to inflame the family and we all understand that.
John enjoyed the trip to Windsor and drove us there in fact. He is so improved this past couple of days. As luck would have it we came across someone today who had had the exact problem with her knee. While visiting our dear friend Donna in Windsor, her cleaner overheard John’s description of his condition and piped up that she had the same issue in 2015 and had to have a second knee replacement, but the infection persisted despite that and it took 12 months on IV antibiotics to fix it. So much for the surgical solution. How lucky we got that story before seeing the doc tomorrow, ammunition.
July 27, 2017
Another big improvement in John’s CRP today, now down to 38 (10 times what it should be, but beggars can’t be choosers). The improvement was encouraging enough for the infectious diseases doctor at St. V’s to decide to terminate his IV antibiotics this weekend and go to high-dose oral ones. No guarantees that they will hold the infection but he says it is worth a try. We see him again in a fortnight and then a month, by which time he can decide if surgery is needed or if he is managing well enough without it. The meds will be needed for the rest of his life, it is a suppression, not a cure. However, even a week ago the surgery was looking almost certain, so this is a huge cause for celebration and we responded with double Messina gelatos on the way back to the car. Prior to this appointment we saw his haematologist who didn’t even know of his troubles, despite my ringing her office twice, she was overseas at the time, but still………. She said that the temperature in Switzerland was crazy, 40 degrees for a week, record temperatures for the area. Scary.
July 28, 2017
Last day on the Baxter bottle for John, no more nurses after tomorrow, or so we thought. I am a little concerned that the infectious diseases doc at Westmead said there was no way he could transition to oral medication as it wouldn’t hold the infection and then Ian Wong says we will do just that thing. But he is right that if we don’t try it we will never know if it will work. I was getting ready for book group when John discovered he had missed a call from Nada while talking to Stephen. It was brief and to the point ‘Your immunoglobulin level has gone down to a very low level due to the infection and you need to have a transfusion asap, you will get a call.’ Shortly after the call came from Kinghorn booking him in for a transfusion first thing Monday, the cancer centre there is a day service and doesn’t open on weekends. So then we had to make a flurry of calls to St. V’s and Westmead: Should we still get the IV line taken out tomorrow, answer NO. Can the line be taken out there on Monday instead, answer YES. Does this affect going on to tablets instead of IV, answer NO. So we are back to the old ‘careful of infection’ routine till he gets the transfusion. Never a dull moment here.
Robert came to ‘mind’ John so Sue and I could go together to book group at Norma’s house. Norma has her own set of problems with her John, who has been in hospital and is now ill at home. Good meeting on the bleak but wonderful ‘The Sound of One Hand Clapping’.
July 29, 2017
The nurse came for the final (we hope) disconnection of the IV and we chatted about the differing circumstances these nurses face ‘going from mansions to hovels, from easy people to ice addicts’. Why can’t our police be trained to handle people like these nurses have to? There is too much focus on weapons training and not enough education about handling difficult people, a big part of the job of a police officer should be disarming tense situations. The Liberal government who changed the NSW Police Service to the NSW Police Force did us all a great disservice. Step off soapbox now.
Did a bit of grocery shopping with John in tow and then he slept it off for an hour and a half. Made a pav for tomorrow with my new Kenwood Chef. Everything is so much easier, from mixing a pav to mashing potatoes to making a dough, the result is vastly superior to my old one and I get such pleasure using it.
July 30, 2017
Yesterday I was quite worried about John’s mood, he slept much of the afternoon after we went out briefly and then slept again all evening in his chair, not interested in reading, doing the jigsaw or anything else. He is just sick of being sick. Today he has been a lot better and having Dav, Louis and Millie here for lunch helped I think. Had a simple meal followed by pavlova with strawberries, kiwi fruit and passionfruit, which matched the summer-like weather, the warmest July day on record. I gave Millie a little backpack today and to our great surprise she immediately stood up and walked. She had taken the odd tentative step before but this was different, she walked confidently across the room a number of times, aided apparently by the change of balance that the backpack gave her, amazing to see.
Just watched Grand Designs NZ on TV and, apart from just loving the presenter, it made me nostalgic to go back there. What a decent bunch of people Kiwis are. A couple of weeks ago I was putting oil in my car out the front of the house when a man offered to help, the first time that has happened. He was Ewi the Kiwi as he proudly told me, ‘If you ever need help I am just around the corner’, he said. I think that legendary NZ generosity might have trickled through their society from the Maori and I can’t wait to experience it again before too long.
July 31, 2017
Early trip in to Kinghorn to get John hooked up to an Intragram immunoglobulin transfusion, 6 bottles of same to be precise, ‘a big dose’ according to the nurses. It is a soup of antibodies made from the pooled plasma of many people and took all day to infuse in the facility he used to go to for chemotherapy, then the PICC line was removed and he had to rest there for an hour after that. So tomorrow will be the last home nurse visit just to check on the dressing and to take his vital signs. One odd thing was that we asked what the Igg test result was back in May when we last saw Nada and had the blood tests done. It was virtually the same, so when he was told to ‘go and do whatever you want, go out, travel, your immune system is fine’ he had the same low antibodies as he had now. The only explanation we could fathom was that the Igg test takes a day longer than all the others, hence the late call on Friday after he was told on Thursday that all was well. Perhaps that happened in May too but the later result wasn’t picked up or acted on, we will never know without upsetting Nada, but John wondered if it had had a bearing on his getting sick. Luckily we didn’t take her advice to travel!
John seems to limp more in the last couple of days and decided to go to bed tonight at 8.30pm, so unlike him. He also needed help to get his socks off tonight, something he’s been doing on his own for a week. I fear the oral antibiotics aren’t up to the task, with such deterioration in just two days, but perhaps today’s transfusion might improve things.
August 1, 2017
Last night we had another little setback, but at the time it felt more major. John had a high temp when he went to bed at 8.30 and it was still high at 11.30 when I checked as I was heading to bed. The instruction is to head to emergency if it reaches 38 degrees and at 37.8 it was concerning. I woke a few times planning if, when and which hospital we should go to, but by morning it was under 36 so another panic averted. The day picked up as John went off for lunch with his ‘West Ryde Boys’ as he calls them. While he was out the nurse rang and I told her about the temperature issue, she decided to ring Ian Wong for an opinion and it was that the transfusion is quite capable of producing that symptom, but if it continued we were to go straight to hospital. Another day, another little dilemma dealt with successfully.
August 2, 2017
Good day began when I went into Lane Cove Library to return a book and found they had a book sale on. Despite my resolution to buy no more books, I weakened and got 4 novels for $5, a Murakami, a Winton, a Lessing and a Toews, so they will keep me out of mischief, putting the piles of waiting non-fiction back a little further. Then we headed in to lunch at Davina’s with Carly before her trip to Japan to meet up with Fahad on Saturday. She did a wonderful baked salmon dish with pesto, macadamia nuts and green herbs, I have the recipe and will use it soon. Carly came back to Baulko with us this arv and now we are all reading in front of the fire, while she fields texts with Fahad in Karachi. The only down side of the day was John getting out of the car awkwardly and hurting his knee badly when we got home, temporary pain but severe enough to make him swear profusely. We go to see Bob tomorrow for a CRP blood test as we are a nurse free household now.
August 3, 2017
Carly, John and I spent a leisurely day at home, so leisurely in fact that we were all still in our pyjamas and dressing gowns at 11am when Michelle W. turned up unexpectedly to clean, but we eased her into relaxed mode with a coffee and biscuits so that we were all in similar mood. Carly made last minute preparations for her trip to Japan including many texts with Fahad and took off for Canberra at 5pm at which time we headed up to see Dr Bob, leaving there well after 6 with John needing blood taken for CRP and Igg results. Bob is as much in the dark as we are regarding John’s future, it is all wait and see.
Made a big shopping boo-boo which I only discovered tonight when I opened a tin of Malted Milk Powder (lurrve) to put on my icecream to find I had bought an identically sized tin of Malt Extract by mistake. I had been force fed this gross stuff as a child along with cod liver oil as it was supposed to stop my being a sickly kid. One taste took me back to that time, I had forgotten all about it and didn’t even know it was still available. A memory I could have done without.
So Arthur Sinodinos walked free from ICAC’s corruption inquiry. Having sat through much of his testimony in person I was sure he’d be having a holiday at Her Majesty’s pleasure. But I recall your testimony well Arthur and you need to buy a lottery ticket because you are a lucky, lucky man.
August 4, 2017
Decided to go to the Archibald Prize exhibition today, with John seeing it in style from the wheelchair Fran has lent us. I don’t think it was a great year for entries, but we both had a vote in the People’s Choice as usual, my vote going to Phil Meatchem’s painting of an Aussie actor whose name I’ve already forgotten, appropriately titled ‘Aah Yeah, That Guy’. John voted for Anh Do’s wonderful portrait of Jack Charles, which I am tipping to take out the People’s Choice. Some of the Aboriginal art in the Wynne Prize was absolutely stunning, including the winner unusually, but they were way too large to secrete in my bag on the way out (or even to hang in the house I should say).
While we were in the gallery I got a call from Bob to say that John’s CRP has gone up to 144 on the tablets, from 38 on the IV drugs. Very disappointing but not unexpected, somehow not as depressing when we were in the Art Gallery as it would have been had we been at home. He also had my results from the recent gastroscopy, no cancer thankfully but chronic inflammation of the stomach lining, again not unexpected, which is being addressed with drugs already.
August 5, 2017
Decided to go to Windsor to take some donations for Hawkesbury Helping Hands. I haven’t been able to help in the normal role since early June, so I felt good about at least doing something. Hopefully I can get back into the swing of things before too long, I miss the volunteers but more especially the clients. Went to the library and then we visited Brian for a while, sitting on his sun-trap verandah and chewing the fat. The rest of the day was spent with chores and a bit of jigsaw puzzling, at least I’ve got one whole border out now, but much more to go.
August 6, 2017
I decided to bite the bullet and finish off the income and interest calculations to send to the accountant for my last business return, though only the first 2 months of it was business. From now on it is just Centrelink and will make doing my tax a breeze, one meagre advantage of being on the pension.I then treated myself to making a Lemon, Limoncello and Lavender Tart which has lavender flowers from the garden in the pastry as well as sprinkled over the top of the curd filling. It looks amazing and we will try it tonight watching Grand Designs New Zealand. Planned menus for visitors coming during the week so I can shop tomorrow and finished the day spending an hour on the jigsaw, which John has temporarily abandoned in frustration.
August 7, 2017
John was disinclined to go out today, admittedly I was only offering a trip to the shops, but he has been happy to come before just to get out. I think he is worse in many respects, including in his pain levels but in other ways too. We did go for a short walk up the street late in the day, but it isn’t a patch on the bushwalks we were doing prior to June 15 when he got sick, no wonder he is disheartened.
Today my therapy included making meringue shells in two sizes, dessert size and morning tea size, then deciding to try my hand at brioche which took up way too much of my day, but looks pretty good, we will try it for breakfast. My fab looking Limoncello and Lavender Tart from yesterday was too tart according to John. I had reduced the number of lemons in it from 5 to 4 but clearly that was still too many.
August 8, 2017
We had a lovely day today with Bronwyn and Michael coming for morning tea and then Dally Messenger for the afternoon and dinner. He is up from Melbourne to be interviewed by Rachel Cohn for an upcoming radio program, The Spirit of Things, which he recorded today. So we spent the evening chewing the fat and he has just left to bus back to his city hotel. John has been a lot better, due to the visitors I’m sure, though Bob rang to say his Igg has gone from 2.3 to 11.8 (over 6 is good) following the transfusion last week. We had the brioche I made yesterday for breakfast this morning, then all the food with the visitors so we are right royally stuffed.
August 9, 2017
Last week I bought four novels from a sale at Lane Cove Library, without looking at the storylines, just took them on spec. The first I read was Norwegian Wood by Haruki Murakami, which was so famous at the time that the author had to leave Japan to avoid the adulation, though I didn’t warm to it and struggled to finish. It tells the story of a young woman affected by two suicides, her boyfriend and her sister. Glad to be shot of it, I began the second book, All My Puny Sorrows by Canadian writer Miriam Toews and was engrossed within a few pages. Coincidentally it is the story of a woman desperately trying to stop her famous classical pianist sister from committing suicide. Perhaps there is an embargo on suicide books in Lane Cove I wondered, the book bore no library stamps and was as new, an unwanted gift from the publisher perhaps?
I have been forever affected by this book. It says so much about struggling for mental health, how we manage to carry on under pressure, how in a crisis we form close relationships with people we will never see again, how important friends are, how we can be so depressed at 2am yet wake up renewed and ready to fight another day. It deals with the after effects of a religious childhood and weighs in on euthanasia. I sensed this must be more than a novel, it just had to be autobiographical, and so it proved to be. I read aloud to John an innocuous paragraph, a funny paragraph in fact, and ended up in shuddering tears. It is already covered in pencil marks and it is a keeper.
August 10, 2017
We arrived very early for Ian Wong’s appointment and he was running very late because, we subsequently discovered, he needed to give bad news to a patient who didn’t speak adequate English. After struggling with Google translator it took him half an hour to contact a phone translation service while the poor patient, I am assuming, squirmed and guessed he was in deep trouble. So after an hour and a half in the waiting room he called us and we saw his immediate frown at John’s inability to walk unaided. He is very disappointed with John’s (lack of) progress and was tempted to refer him for surgery immediately, but eventually decided to give him just two more weeks to improve and get the CRP down, otherwise it is off to the surgeon for two operations which will see him out of action for months. It was very disappointing, but not unexpected. We had planned to have dinner near the hospital and let the peak hour pass, but we couldn’t manage it and came home to lick our wounds.
August 11, 2017
Slept only till 3am, but John didn’t appear till 9.15. Over breakfast we talked through yesterday’s news, and much else about the last 10 years, shed a few tears and decided we needed to get away from it all, so we will go back to where all John’s health problems began almost a year ago, Kiama. We both find sitting on the verandah there looking out at the ocean by day and the lighthouse by night is excellent medicine for whatever ails us, so we have booked a sea view cabin for 5 nights from this Sunday. They remember us from previous occasions, particularly the week when John was so ill there last September and offered us a very good deal, unasked for. We need to prove Ian Wong wrong, that sounds like a lousy song lyric, as he is pretty sure John won’t improve any more, but he doesn’t know the powers of the waves crashing on those lovely basalt rocks. Can’t wait to carpe some diems.
August 12, 2017
What a difference a day makes! John was a lot better today and went into the backyard for the first time in two months and tightened the guy rope (should I say girl rope?) on a young tree while he was down there. I am not sure if it is the transfusion he had or the thought of going to Kiama tomorrow or Ian Wong’s threat, or a combination of all three, but something is working all of a sudden, and about time. Had John’s neighbour Anne and daughter Karina for afternoon tea, I did a Blueberry and Lemon Cake from the book my New Zealand friend Mary bought for me when we were over there and she brought a chocolate and strawberry one, made by a Russian friend who bakes every day and sells to friends, apparently doing 20 cakes some weekends. Sounds fun if you don’t have many flops, which lets me out.
August 13, 2017
Exactly 11 months since John got sick here at Kiama, so we are going to do an el reverso and have him get well here this time. Good trip down and then fish and chips by Kiama Harbour, after a 25 minute wait just to order, the place was crawling with people. Got into our cabin at 2pm in perfect weather, looking out over the ocean is an immediate relaxant. John had a sleep before we took a gentle walk along the cliff front at dusk. Dinner followed by Grand Designs New Zealand, then the TV packed it in just as John’s favourite show Poldark was beginning. Quelle horreur, his world was collapsing, but disaster averted when I found another set in the bedroom wardrobe. Phew.
August 14, 2017
What a lovely day! First John fixed the TV just by turning it off and on again. An early walk (well 7.30 is early to us) along the clifftop, followed by a hot breakfast, then a car trip to town to the shop where I like to buy bits for Millie. No shoes in her size but the lady will bring some tomorrow. Bought some blackfish for dinner and some prawns for lunch from the Fishermen’s Co-op before returning to the cabin for said lunch and for John to have a sleep, while I went for a walk. The afternoon saw us take a drive to the Little Blowhole and Easts Beach, sadly completely hemmed in by a massive private caravan and cabin park, the only private one here, the other three all being council owned and run. Then we discovered a lovely patch of native bush called Bonaira Park, looked after by council, where John did quite a good walk without his walking stick. We are practising for the next visit to Ian Wong when he is going to do a funky little dance to show how improved he is (we hope anyway). Home to find that sneaky Barnaby Joyce could be a Kiwi after all, this makes our day after Brandis insisted the Greens members should repay all salary since they arrived in parliament, you won’t hear that argument again I’m thinking.
August 15, 2017
Not the beach weather we were predicted today but it didn’t matter a hoot. Went up to town to buy the shoes I wanted for Millie and came back with a stylish aqua pair. We stopped in at our fave bakery here Flour, Water, Salt and stocked up on bread plus pies for dinner, Beef and Guinness for sir and Pumpkin and Goat Cheese for madam, so I just need to cook some greens tonight. Drove out to Jamberoo and enjoyed looking over the small but stylish antique shop there, which had an exact mate to my pair of Chinese jade bowls for a mere $500 for the single one, ahem, I think I had better move my pair to a slightly higher and more secure place in the loungeroom as they are easily bumped where they are now on the low table near the front door that houses the Buddha. I was impressed by a set of 8 tiny horses carved out of mammoth tusks, no price on them and I didn’t ask, but many thousands I am sure. Loved a necklace there made of multi-coloured clay beads, all different patterns, in shades of green, $80 and thinking……. Later in the afternoon we drove down the kilometre or so to Kendall’s Beach and had a walk along the sand, bliss.
August 16, 2017
It was blowing a gale this morning so we changed tack and went inland to Saddleback Lookout, certainly not beach weather. In the afternoon we did over the Farmer’s Market but many of the stalls were missing due to the weather, including the one where we usually buy honey, but we still managed to stock up on fruit and veges as usual including a big bag of Dutch Cream potatoes direct from the farm. In Kiama township we came across a cousin of John’s from the country who has retired here. He insisted we come for dinner tonight so we spent the evening with them in their large modern house near the town. They love the area and are really glad to be in Kiama.
August 17, 2017
Another great walking stick free day, beginning with a drive to Gerringong, where I bought Millie a lovely hand knitted cardigan from the craft shop there and Berry, where we partook of our favourite Pines Icecream, made on a dairy farm here in Kiama. I had a scoop each of pistachio and rose and without a doubt the rose was the best icecream I have ever eaten, we got some Pines unhomogenised milk there too. Then off to The Treat Factory, a manufacturing place we only discovered early this year, where we stocked up on a few necessaries like their raspberry and strawberry icecream sauces and their coconut ice that I have been craving for a while. We always go in for one or two things and come out with a basketful. It always smells different there depending on what they are cooking, today the air was redolent with butter chicken sauce. Went for an early evening walk before a romantic dinner for two at Penny Whistlers by the harbour. Does life get any better?
August 18, 2017
A fond farewell to our friends at Surf Beach cabins, looking forward to a speedy return. We called in at the medical centre on the way home, just moved into new and swish premises, for John to have a blood test to see how his CRP is doing. Bumped into Bob who was just knocking off, so he proudly showed us his new office with doors that automatically lock when closed and then unlock from inside with the swish of a hand over a sensor. I wondered to Bob how long it would be before he gets locked inside his windowless office (ugh) due to a blackout and the firies need to smash the newfangle glass door to get him out. We wandered through the mall with him and caught up for a while before heading home.
Travelled into town on the bus with Michelle C. at 5.30 and tried the new Gateway food complex near the Quay, 3 floors of restaurants and take-aways of all cuisines and price levels, sorely needed in that area. We settled on Malaysian street food at Jimmys and were mightily impressed by the taste, the service and the price. Then on to the Opera House to see Simone Young conduct the Sydney Symphony Orchestra in a programme of Beethoven and Bruckner. I had heard neither piece before and enjoyed both immensely. I wish I could describe the music adequately, but sadly my musical vocabulary is poor, as is my technical understanding. But the Bruckner particularly inspires words like ‘monumental’, ‘huge’ and ‘stupendous’. The music alternated repeatedly between soft plucked strings and dramatic full orchestral dynamism with horns ablaze and kettle drums apounding. We were lucky to be sitting behind the orchestra so we were within a long reach of said kettle drummer and I noticed his sticks trembling in his hands in anticipation as his important parts approached. John was waiting up for my midnight arrival home, bless him.
August 19, 2017
A restful day after a busy one yesterday, his nibs spent the day in front of the fire reading the papers and offering me snippets. Caught up on boring chores, then had just arranged with Michelle to go to see the famous ‘Rach 2’ performed in late August when an email came in from Bob offering us free tickets to hear him singing in the Philharmonia Choir next Thursday night at the Recital Centre. I convinced John that he will be ok to go, seeing we will be in town anyway to see Dr Wong, it is just a matter of staying in a bit longer for the concert, we can cab from the car if necessary. Whoo hoo, culture vultures we be.