Wed Feb 1
In the night Steve again moved his TV onto its back. I asked him who he thouht would fix it this time and he said "Tony." I told him I wouldn't, but later relented.
I have gained a little weight. After being about 123 Lb for sometime I was at 127 Lb. Is this a trend? Probably a blip.
He was civilised at breakfast. I was feeling no effects yet of the Chemo, but as I ate my cereal and read the instructions for which pre and post chemo meds I should take, noticed I had failed to take Aprepitant an hour before treatment. And that was the higher dose - 125 Mg. I decided to take it with lunch today. So far I have seen no ill-effests. Amanda called and we had a very pleasant chat. She sounded very well.
After lunch I drove to Shoppers to order Steve more Tamsulosin, and check out Garmin on a short run. Garmin worked well, and any more changes to additional settings I'll get from the software now on my computer. James and I had a great call and he made a good suggestion regarding my fall yesterday - that I or one of the Loblaws medically trained staff shuld obtain/view any CCTV coverage. I called and got Matt, one of Carly's colleagues, who was helpful, took the details, and said he would see if he could find any relevant footage, and call me back.
Tues Jan 31 Med
I left home by 7:45 for my first Chemo. L-A also got up to support me but I was feeling good. I was in on time, and amazingly only waited 10 minutes before being called into the chemo room. It was less than an hour so I was ready to go home by 11. No side effects yet! I drove from Kipling to Loblaws to buy cake. As I entered the store a man tossed his used cart into the middle of the lobby and I turned to say something to him although I was in no danger. However it did distract me and I didn't notice one of their large carpets was not flat on the floor. My right foot caught on it and I fell prostrate on my face. I have no memory of actually falling, which would have been normal. I remember feeling my front tooth hit the tiled floor, and my nose must have done the same because members of small crowd that saw the incident said I had a cut there. It was certainly bleeding. One of them kindly called the staff medical people, who came with ice and gauze, which was soothing.
I could feel that my lip had been damaged, possibly pierced, by my remaining and important front tooth.
Another member of the crowd said he had seen the whole incident and the edge of the carpet had definitely been raised off the floor before I fell.
The incident happened about 12:45. One of the medics suggested calling an ambulance, but I was pretty certain I didn't need that, and didn't want another day in Etobicoke General. I would see Dr Makar this afternoon with L-A, and she would advise me. At this stage my cut lip wasn't sore. Soon I was well enough to get up off the floor (with the help of L-A's cane) and go shopping. I bought tartlets and a slice each of chocolate cake and carrot cake for my midnight snacks. I walked to the car feeling fine and drove home.
At home I thought my eye was focussing a little less well than normal, and my lip didn't look too good and was getting sorer, so I called Loblaws and spoke to the medic who had attended me (who turned out to be the store manager Carly), 416-695-8990. She had aready started an incident report and had my name. She said I should get myself checked out and then get back to her. either way.
Now lets look more deeply at this incident. I fell from standing and landed on my nose and mouth and forehead. Bone should have cracked; teeth should have been knocked out. Concussion? My hip or other lower part of my body should have been bruised. Bruises could have come up on my face the next day; there was no sign of them. With the blood I might have been carried off unconscious to the hospital. In fact I didn't lose consciousness for a second after falling. It was as if I was lowered to the hard floor gently by forces unknown. Only one explanation comes to my mind of what those forces were: angels, watching me from before I tripped and taking instant action. TKOG.
I drove home without a problem. I opened the box with the Garmin that had arrived several days ago. At last I had some time to familiarise myself with it. It was somwhat different from the one that was stolen 2 years ago in a Worcester parking lot. I left it uploading maps and things while we went to see Dr. Makar, who wanted to see L-A after her recent fatty liver blood test. She is sending her to a specialist. L-A has lost 8 lbs since starting on her now diet just a week or so ago, and losing weight and drinking more water are the best things she can do for her liver. I told Dr Maker about my fall, and amazigly she said I didn't need to alert the hospital, because it really was not a fall but a trip. A fall is when there is no apparent reason other than a symptom of the cancer. She looked at my lip, warned that it would be sore and swell up for a day or so, but needed no treatment. We both left feeling relieved.
We had the third part of the Thai curry for dinner, and lots of it. Garmin had finished uploading, and seemed good, though I couldn't get it to display a map of a new journey to destination. Maybe I would have to be on my way for that to happen. I was able that the map that was on the device already at least covered Toronto and Ottawa. Quite a day.
Mon Jan 30
Early on we heard a bang and a curse and found Steve had fallen backwards into the bath. Initially I never thought he would get out of there without the fire brigade, but with a combination of my encouragement and his residual strength he managed to move himself to a standing position.
A little later I saw him through the bathroom open door having a pee. He had no trousers on; just his diapers. The diapers were still fully on as he peed. He had just made room for his penis under the side of the diaper. No wonder he would likely pee on the floor, which indeed he had done. He watched as I mopped it up with kitchen roll.
I had woken up with the idea that fried egs and fried bread and prosciutto would be nice for Steve and me and help him not be so hungry for the rest of the day. It was tight, since L-A had an appointment with Dr Silver at 11. Before he had even finished the breakfast we saw a TIA was coming on, and persuaded him to use the walker, and get safely to bed before we left.
With snow on the pathways at the foot clinic, and no parking spaces left, L-A went in alone with the walker. She was less happy when she re-appeared having not been able to raise me on the phone (it apprears likely I fell asleep), but she found the car.
I phoned Dr Judah's office and his assistant said he would call me back after 6. Then I called the Source to hear that the Sony WH_1000XM4 had been replaced by a newer model, the WH_1000XM5, and they would have no stock for at least two weeks. Laurie-Ann had listened to the call and established that Best Buy had units available. I called the Best Buy call centre which confirmed they had at least 5 of the new XM5s at our local store. So after lunch I drove there and there they were in all their glory. A young Indian man from Mumbai assisted me. His previous job had been a year with the Arsenal Football Club and he loved Arsenal. After I had made the purchase, discovering there was no customer service help available from Best Buy unless one bought a 2 or 3 year total replacement warranty. I decided that since I wanted no future hassles I would pay ~$145 for the 3-year package. I was quite pleased with the basic price, $500, so this seemed reasonable. I drove home with the precious goods, not knowing
when I would have the spare time actually to try out the phones, but they were already giving me pleasure as I set the package next to the Garmin. For the rest of the day Steve gave us none of the hassles that he had yesterday. We listened on line to the first of a 6-day series of special prayer events.
Sun Jan 29 Med
The news from Paypal was not so good this morning: 'Tony, please be informed that you have made the payment using your bank ending with 00 not **48. On the second transaction I see that you have made the payment as eCheck. In this case you can contact your bank and get the eCheck cancelled and initate a new transaction using the correct funding source. For the first transaction please make sure you have sufficient funds on the account ending with **00 so that you won't face an NSF fee charged from your bank. '
As soon as we had watched CTF, I got on the phone to Simplii and asked them to transfer sufficient cash to the savings account, which they did immediately. As far as e-Check is concerned they hadn't heard of it. I then replied to Paypal accordingly asking what can be done about the second purchase.
Some time before we lunched, Steve found and ate raw a bagel. He then asked if he could have an apple, but instead started on a second bagel. At lunch time I served him soup and half a toasted bagel with roast beef. Has his stomach no limits?! We are two invalids looking after someone who is rapidly losing his mind and hearing, while becoming more cantankerous.
In the afternoon while L-A prepared a Thai chicken curry for dinner, I responded to the Vacant Unit Tax Property Occupancy Declaration. Failure to show that a domestic residence has been lying unoccupied can now incur severe financial penalties, and the VTUP declaration is the way owners of properties avoid those penalties. Once I had the roll number and access code for Poulin it was all fairly plain sailing.
Once that task was completed I got down to a more pleasant one. I am going to buy a very high quality pair of headphones to really enjoy my music into the distant future. This is my one fun purchase following the award of the MoD compensation. I had decided on the Sony WH_1000XM4, with its unique (?) DSEE Extractive Audio Upscaling system. The reason I had delayed the purchase thus far was I couldn't demonstrate that the Blue Tooth system on my main computer was working, though we had used it extensively through the August (MR230) unit in Poulin. But since then I had even forgotten how to set it up, or there was a fault either on the computer Blue Tooth or the August.
In recent weeks I had attempted to get it working into the Leak Mini-Sandwich speaker. If I couldn't fix it, I planned to take my computer into The Source and have them test out the Blue Tooth facility with any pair of headphones. Today was my final attempt to prove all was well with my computer (and the August). I fiddled and fiddled, and suddenly the sound of the source music went off, as it would if the destination device was properly paired. I switched my attention to the Pyle amplifier, and held down the mode button set to Blue Tooth for several seconds. Suddenly music was coming through! I would no longer have to take my computer into The Source to check its Blue Tooth was working.
Steve's condition was going from bad to worse, fast. He didn't want to sleep, day or night. He was talking continually in loud gibberish, with occasional animal noises. He was belligerent when challenged. Overnight he ate 8 of my Folic Acid pills. He has never taken our medications before. He left taps running several times. He moved a box of my financial records from the dining room to his room, though he hadn't tamper with them. He moved a carton of Vegan yoghurt from the 'fridge to the oven, though did not turn on the oven. I resolved to call Dr Judah tomorrow.
Sat Jan 28 Med
I was not attentive to Steve as he finished his breakfast. I went to give L-A her MLD, and heard a bang. Steve had had TIA24 and fallen off his chair. It was with some difficulty that I got him sitting on his walker, but when I pulled it backwards out of the kitchen, the chair slipped forward and I was unable to hold the weight and felt the ligaments in my leg and back stretch - the same ones as caused all the trouble back in 2018. Suddenly I was a worse case than he. I managed to pull the walker from under him, and then he was able to crawl to the couch. I was only able to move without severe pain with the help of a stick or his walker.
By now L-A had arrived, and gave me some Stilpane, and Voltaren for my leg and back. I managed to serve L-A our breakfasts.
The 4th R5000 had still not reached FNB, so I sent Bella R14,010 and transfered another R5000 from Simplii. Hopefully the R14,010 will give her some credibility with the school authorities. Paypal had mysteriously set my preferred linked bank account to my Simplii savings account, which had no cash in it. I communicated with Paypal by text, and they actually replied quite soon:
'I have reviewed your PayPal account. I see that you have made payment of $5000 USD to “Mirjana Meeks” where PayPal has upfronted the funds to the merchant and we have attempted to take the funds from your bank ending with **00 which is under processing. Need not worry, our system will automatically deduct the funds from your bank at the earliest.'
I called Simplii and they confirmed no money had been taken from my accounts. L-A was in conversation with M-A so I broke in and recommended M-A not withdraw any more of the $US 5,000 she had received until the problem was sorted out; she had already paid her Mastercard.
XE Transfers forwarded a message from Sikhona, the South African watchdog that ensures limits on money transfers into the country, saying that I had exceeded my monthy limit, but not to worry, they would forward the overpayments on 1 February.
So I stopped worrying; the problems had been partly beyond my control. Hobbling around making lunch was a nuisance but not painful, using L-A's walking stick. I managed to get downstairs and back up with the soup.
I made a chart of which of my new medications needed to be taken when. In the process I found they had forgotten to put in the folic acid, which I should have started on yesterday.
As L-A had a long nap in the green chair, I decided to ensure I could still drive, by going to get the folic acid and some spring onions. It wasn't hard, though I parked illegally for both.
Fri Jan 27 Med
I collected my 7 prescriptions of anti-chemo drugs from Renforth IDA. They are: folic acid 1 mg, ondansetron 8mg, aprepitant 125 mg, aprepitant 80 mg, dexamethasone 4mg, prochlorperazine 5mg (which I have taken for nausea for months).
I phoned V at Eringate Pharmacy and asked her the dosage of my B12 shots. It is 1ML. This data I passed to Dr Bradbuty using pmhelp.ca.
Thu Jan 26 Med
I was a little apprehensive as I tried again to send the money to M-A. Paypal behaved as it did yesterday, ending with the same error message to the effect that the transaction could not be made at this time. No explanation as to why, or error code. At this point, L-A made a suggestion she had made yesterday but I had ignored: to switch from one transaction to two transactions of $US 5,000. She has never been a financial planner and is not a Paypal expert, but I decided to humour her. It worked! I have since done some checking any not found any restrictions on the transfer amount till $US 60,000.
Yet both transfers indicated success. This feels awfully like TKOG. A couple of hours later M-A had received notifications of the transfers, though not the money itself, which remained in our bank account.
I began to feel a warm glow, even joy, from being able to help our friend. I checked the UHN Portal and found I have a chemo session next Tuesday at 8:45 am. I copied the 7 prescriptions and took them to Renforth IDA. They will be ready tomorrow afternoon. Among Steve's clothes I found a brand new pair of sweat pants and they fitted him, and even looked good.
Wed Jan 25 Med
I was ready for my X-Ray at PMH by 10:15. With the benedit of hindsight I am glad not to have been shown the result by the technician, but you can see it now. The left lung is almost completely obscured by pleural fluid that can't be drained.
When the time came to see Penny Bradbury she didn't keep me waiting, and soon had the X-Ray image from this morning up on the screen. It was worse than I have ever seen it. She was surprized I wasn't having even more problems breathing.
She said the time had come to switch from immunotherapy to chemotherapy, the only questions were whether it should be immediate, or after the next CT Scan on 24 February - or sooner if she could organize it. I was all for making the switch as soon as possible. Here's a segment from the Health Update that L-A would send out tomorrow: 'Tony's mesothelioma cancer situation has been monitored by Dr. Penny Bradbury and team. Tony is not a surgical candidate at this time. The tumour seemed to be shrinking a little in some spots, although this did not continue. His latest chest X-Ray shows very little of his left lung visible, unobscured by pleural fluid. His most recent CT scan shows a continuing increase in the size of the tumour, as it presses against the lung. Tony will start chemotherapy this coming Tues 31 January. Tony is hopeful with a good attitude. The need to switch to chemo is disappointing, but it really can shrink tumours.
Otherwise, Tony has been managing, but he experiences breathlessness while doing anything involving moving his body. Driving does not cause breathlessness. He takes regular rests to accomplish needed tasks. He has a palliative team that advises on his painkillers, and currently have kept him on Tylenol # 2s, and our new GP Dr. Amany Makar has continued Tony’s B12 injections. Tony continues to have taste issues with all kinds of foods, which spoil his enjoyment in some meals, but not most dinners. However, he has not lost any more weight.'
Dr Bradbury gave me 7 prescriptions for drugs to counter the side effects of chemo, with detailed instructions. When I left the hospital armed with sesame snaps and Skor the snow was falling as forecast for a big storm. I had left the car in a disabled spot right in front of the station entrance at Kipling, so I only had to deal with clearing the snow off the car.
For dinner we enjoyed a pork tenderloin stew with peppers. I wrote a list of the many additional things that must be done over the next few days.
We had a connect group meeting at 7:30. At one stage we were asked had we experienced the joy of the Lord recently. I told how the process of being able to halp M-A, allowing her to get to the next phase of her life, had given me joy. It is the same when one is being used by the Lord to fulfill someone's prayers.
I tried to send the loan money to M-A by Paypal but ran into problems. It was late and I was probably not very efficient.
Tue Jan 24 Med
I went back again to Eringate Clinic and Pharmacy. V knew what I was there for and she went and spoke to the pharmacy. Soon I was talking to them and they gave me the B12 prescription, only charging the $4:11 that Renforth would have charged. So now I know you aren't linked just to one Pharmacy to get the senior's discount. I took the B12 across to V and she gave me the injection.
I dropped into Shoppers on the way home but they didn't have Steve's Trazodone yet. I queried it and discovered they had been assuming he was only having half a pill a day, whereas Dr Judah had authorized a full pill a month or so ago. We sorted it out by getting his receptionist and finally Dr Judah himself on the phone. Judah sent in a new prescription immediately, but it wouldn't be ready for an hour.
I drove on to Loblaws to try and find cake or similar for snacking, ending up with 6 cranberry lemon muffins and 4 large slices of chocolate fudge cake, great for my after-midnight snacks.
After lunch I solved the html problem of linking to a word doc on Sunday's journal by doing the key work on the Black Vista computer. The problem is that I am using Libre Office on my main computer, and it isn't perfect, particularly in incorporating non-HTML words or phrases in an HTML document. but saved me the major expense of MS Word when I upgraded to Windows 10.
I had received a letter from UK Pensions saying that they were aware I had moved from South Africa to Canada, and was this permanent? I mailed the reply form.
We had known Mirjana (M-A) Meeks for well over a decade, enjoying her on-line courtship by Will Meeks from Tennessee, and attending their wedding in Ottawa in August 2012, I as Will's best man, and both of us as official witnesses. She had been a prayer partner for L-A throughout our mission to South Africa. Then in 2022 trajedy struck, as Will died from cancer on 17 January, the day we flew back from SA, just 9 1/2 years married, leaving M-A high and dry in Tennessee. Because of associations with Will's family, she needed to sell their house by April/May 2023. But her cash was close to exhausted and she was living hand to mouth in early 2023, with just a part-time job at Cracker Barrel. We had sent her $100 US around Christmas, but the bigger problem remained. Then our nest egg finally arrived in January from the MoD. From listening to one half of her regular video/prayer chats with L-A I realised we might be able to help her. It seemed she needed about $US 10,000 to be able to complete the sale of her house, and living expenses while this was done. Over the past few days I had found out more about her situation,
and realized that what she needed was an interest-free loan, not a gift, and furthermore that was something we could supply without financial pain for us. This afternoon the three of us had a video chat and I proposed an interest free loan of $US 10,000 to be repaid from the proceeds of her house sale within 6 months. I said we would send the money quickly via Paypal.
Mon Jan 23 Med
I went to Eringate hopefully to collect my prescription for B12 shots, which Renforth IDA had sent over, but V was unsure of my wishes for it. I confirmed she should pass it to the Eringate pharmacy and I'll buy the drugs from them, thinking that this would not get me the ~free drugs benefit since it was a different pharmacy. But I had no choice with Lindholm being very rarely in his surgery. She said I should come back tomorrow.
I helped L-A cook chicken thighs for dinner which were excellent. Dealing with Steve took extra patience, and at one point a raised voice on my part as he refused to leave the kitchen when L-A wanted to go to bed. His mental state is worsening.
Sun Jan 22 Family Conference 2023
Busy breakfast. I seemed to be rushing to clear the washing up, feed Steve and L-A and myself, vacuum, and be ready to leave for church by 10:45.
As we entered the church I was pleasantly surprized when Murray called me Tony. He is now the head of a large network of churches world-wide in adition to this one, yet he knows the names of two of his least active members who have minimal roles. Ash brought the message: how big is your ask? In the gospels Jesus repeatedly encourages us to ask for anything we can imagine, and he will give it to us. At the end of her talk, anyone with a big ask in regard to their health and medical matters was invited to the front to pray for matters we had perhaps not thoughts ourselves worthy of in the past. So of course I went up,
the realization coming to me that I am the perfect candidate, who hasn't believed in a complete cure for the cancer, even though many others have prayed for it. My ask has been far too small, but this is going to chnage. In my prayers for myself, and in my acceptance of prayers for me by friends I will expand my horizon to to a complete cure, allowing me to live out my natural life with Laurie-Ann. I will also pray for the cessation of the continual breathlessness and fatigue, symptoms of the cancer.
Catherine, Bob and Paula joined us for a while, and L-A told them of her recent evangelistic chat with Steve, to which he still said "No." We came home via Renforth IDA where I belatedly submitted my dental prescriptions, but was pleased they were ready in 10 minutes.
I was relieved Tara hadn't beaten us home for the family conference; I still had a lunch to prepare and other household things. She came earlier than I had expected, and John arrived in his car with Kennedy shortly after. I was really happy John was joining us, though he could only be with us an hour before he would be returning to Ottawa, where he volunteered that as (one of) Pierre Poilievre's senior staffers he had 800 people reporting to him. I had put out the agenda and the one pager on 'What to do when Steve dies in the first 7 days.' When we 4 were seated I suggested Tara lead the meeting and I would take minutes.
As these things were agreed I became less stressed over the dynamics of the meeting. Everyone was co-operating. Tara started on the ajenda. Here are a few of the decisions that were made. We should investigate air tags for Steve's jackets; a few pairs of elastic topped trousers will be bought; We may need to engage professional sitters if we are out of the house more than 3 hours, but first we should see if Ted would consider providing the service to his old friend; Tara will cover for us when we go to Collingwood so we both gat a much needed holiday; Tara will get a date for a pre-planning meeting with Glendale; Steve's tax return will be done by John's mother's accountatnt in Pickering, which will lead neatly to the year-of-death paperwork; John will look into second hand hospital beds; To offset Steve's TV being knocked over we need a wall mount, and it is possible John has one;
We can expect Warren Kinsella to let Tara have an immediate week off following Steve's death.
Before he left for Ottawa, we watched a touching father daughter chat as John and Kennedy relaxed together. Then John was gone, and Tara soon after.
Around 5:30 L-A said she needed to go to bed, but hoped to get up and would eat her dinner then. The dinner was meatloaf leftovers to which I would add steamed potatoes, cauliflower and peas. I had sliced the cold meatloaf onto three plates. In the previous 2 hours Steve had asked me for food, and I given him strudel. Steve wandered into the kitchen and saw the meatloaf on the plates. He made to take the small slice on my plate. I offered him the larger slice on his own plate, and said he could eat it cold now, or wait 10 minutes to have his complete hot meal. He opted for the former and took the plate back to his room!
I continued the final stage of cooking the vegetables in the steamer. After 5 minutes I went to his room and found him lying on the bed having eaten two thirds of his meatloaf with his fingers. I looked him in the eyes and asked if he would like to have the rest of his meal hot. He smiled at me and said yes. 5 minutes after that I called him into the kitchen and he ate up. When I asked him if he was still hungry he said "No." However, as he passed the counter, where L-A's meat loaf still lay, cold, he made to grab it, but stopped when I remonstrated with him.
Sat Jan 21 Med
I checked the times of my 3 medical meetings - two pharmacies and an off-OHIP dental surgeon. It turned out I should have had Renforth Pharmacy fax Eringate Pharmacy the original prescription for B12 shots. So they have now done that and I should get my shot on Monday.
I turned up at 1pm at the surgery of Oral and Maxillofacial Surgeon, Dr Santino Bambara, within the Cloverdale Dental Group. I mentioned that he had been brought in by Dr Ryan for the extraction because of the immunotherapy drugs I am on. He asked me what drugs they were, and I was surprised he didn't know, but suggested he ask Dr Ryan. He went out for a while, returning with the information and a warning that there were risks associated with the surgery. I said I had been told this and was prepared to accept the risks.
Soon he was giving me local anaesthetics. He went out for 15 minutes for them to work, and then got to work. He brandished a handful of extraction pliers, but as he did the job I felt no pain. There were some strange sounds as parts of the tooth broke off. He was joking with his assistant most of the time which I felt comforting; it suggested things were going according to plan. Afer a while he announced it was all done, though I could feel there was something large still stuck in my mouth. He said it was a roll of gauze and should stay there half an hour. He gave me a prescription for Tylenol No 3 for pain, and Amoxicillin 500 MG for infection. I asked if I could eat when I took it out and he said yes. So I returned to the waiting room for the duration. I attempted to pay the bill, $566, but for some reason the credit card machine didn't like my PIN, but the receptionist asked me for the card and keyed in a bunch of numbers from it, and managed to make it work without the PIN!
Half an hour later I was munching carefully on sweet sour pork and noodles from the takeaway. It was around then that the jaw started hurting. though nothing I couldn't handle. I should have taken the prescriptions to Renforth IDA on my way home, but I didn't. When I got home I should have read the other info he gave me for immediate wound care, but I didn't. I just wasn't feeling very efficient, and instead suggested to L-A that I didn't feel up to doing anything useful but could handle the next episode of 'Slow Horses.' on Apple TV.
Fri Jan 20
As on every day in the last week or so, my first action after dressing was to check the bank account. Even when the MoD finally sent the money, there was still a potentail problem with the National Bank network interpreting the bank codes I had provided, and sending to the right bank account. These had always been where I thought any difficulties would lie.
So when I checked the bank account I really wasn't expecting anything different. Imagine my happiness therefore when I saw the full payout from my claim just sitting in the account, like it was the most normal thing in the world! I didn't rush into our bedroom to tell my sleeping wife. I thought I would let her know in a way she wouldn't be expecting. I copied her on thank-you emails to Kate Leach and Alan Pearson, and Ian McCallum, and waited till she would tell me the news. Which happened an hour or so later, and she whispered it since Steve was sleeping on the couch.
In the morning I made a spreadsheet to track the progress of the fund, and ensure its use for legitimate purposes. The one who needs this money is L-A when I'm gone, and I will make every effort to ensure that happens.
We had our regular lunch and Steve had a large plate of hearty soup and half a bagel with beef, which is normally quite sufficient for him. I was surprised to see him munching into an untoasted English muffin, which he finished. It was in a packet on the counter and he couldn't resist it! His previous meal, breakfast, had been baked beans on fried bread with a poached egg on top. Not much more than an hour later he was again foraging, so I offered him some very dry poppyseed loaf with a cup of tea. He ate all the poppyseed before taking some tea.
In the evening we both paid off our credit cards completely - the balances that had acrued since we had paid them off with the non-registered funds from the AiO. My next step is to replace most of that same fund with the money from the MoD.
Thu Jan 19
Bath morning, followed by toenail cutting morning, using for the first time James' magnifying light. The magnifying capability was not a major bonus because I couldn't achieve a perfect focus with any of the 5 lenses, but the light was extremely helpful and I successfully cut all the toes. I was able to find the waste collection schedule for 2023 online and printed it. Unlikely as this sounds, it doesn't accurately follow 2022, calling for the recycling bin yesterday, which I'd what I put out.
Although I took an anti-nausea pill at breakfast, by mid-day I had fairly severe stomach pains, reminiscent of indigestion. There were some old Rolaids in the bathroom cabinet, so I took one. Had to chew it and some of it ended up in the big hole in the tooth that will be extracted tomorrow. Nevertheless the pain had largely subsided by mid afternoon.
Dr Silver's office called to say that my new orthotic was in. This was left foot only, where I had pain from the arch, and had taken it in on 3 January. I made a special trip to collect it.
I called the contact number at Sony, leaving a message to say that I was very interested in the WH_1000XM4 headphones, but was concerned because the associated infomation on their site suggested that the DSEE extractive audio upscaling facility replaces Bluetooth, and I wondered how the headphones would receive a signal from the laptop.
Wed Jan 18
In the early hours, after getting up for a pee, I tried to sleep on my back, which a few months ago was most comfortable for me, but more recently I've been sleeping on my side. It was an effort to breathe while on my back. In my dozy state I felt that if I fell asleep, I might stop breathing. So I turned over onto my right side, and soon must have gone to sleep.
I had forgotten about putting the garbage bins on the side of the road yesterday, so as soon as I was dressed this morning I put the compost bin by the road. The truck arrived at exactly the time I got it there, earning me a big grin from the driver.
I then managed to put out the recycling bin instead of the garbage bin. We don't have this year's chart yet. So we are now out of sync. Not sure what I'll do about this.
I asked ChatGPT about headphones with dynamic decompression, and the technology is available. They recommended a couple of models that use it: Bose Quiet Comfort 35 II, and Sony WH_1000XM4. I investigated both. The Bose seems to depend on additional external apps that run on an associated Apple device. Their manual and associated literature do not mention the process. Sony calls it DSEE extractive audio upscaling, and it replaces (?) the Bluetooth link with the source. It is available around half price from Amazon's refurbished catalogue. I need to have a chat with a tech specialist at Sony.
My dizziness and breathlessness seem to be getting worse and I worry about getting to PMH next week.
Tara acknowledged to L-A my message about the family conference. We had Ratatouille for dinner. James called while I was helping to make it and recommended the movie of the same name, so we enjoyed it after dinner.
Tue Jan 17
This from Veterans UK: 'Good morning Mr Copple
I have been in touch with our finance dept. this morning and hopefully the payment will be with you very shortly.
I do not work every day so last week a colleague had to validate your home address for banking purposes, so this having been done, finance confirmed the payment will be on its way to you in the next few days.
If there are any issues we shall certainly be in touch immediately. Thank you for your patience - Kate Leach'
So that sounded like good news. Bella's money reached FNB so we sent her a stack of medical and school payments. Then I sent another R5,000 to FNB to be able to keep up the weekly allowance. Bella is going to need a R17,000 payment for school fees, but for this she may have to wait for our nest egg.
I took L-A to a dental cleaning at Cloverdale in the afternoon. She was very tired when she got back. We had a simple dinner that didn't require her involvement. M-A called her after dinner. This was the first anniversary of Will's death. They talked for several hours, probably the longest call they had ever had.
I updated my message to Tara with an agenda for our family conference on Sunday plus a 'Waht to do when Steve Dies' article.
Mon Jan 16
At breakfast I aked Steve if he would like some of his ashes scattered anywhere, and he was non-commital. They will probably go beside Carol's in the grave.
L-A had two dental appointments with Dr Ryan to fit her third and fourth crown. I came home after dropping her for the first appointment, but in the afternoon I stayed out visiting the European bakery. I bought way too much and even ate some in the car while waiting for her. They had poppyseed roll but it was inferior to what we have bought in the past.
Steve was very reserved all day, sleeping most of the time. I worked on 'What to do when somebody dies,' finding some useful material by Eirene.ca, a Canadian cremation company.
She was very tired by early evening and went to bed. I wrote an email to Kate Leach at Veterans UK:
'On 3 January you wrote: It does however take a little time to set up overseas payments since they go via our overseas service provider.
As soon as we have confirmation that the account has been setup, we will let you know
Really sorry to pester you, but has the account with your overseas service provider been set up yet? If not, are we talking weeks, or months?'
Sun Jan 15
Quite early I went into the garage with Steve's car keys (which he cannot use since he has no valid driver's licence). The car started instantly. The keys must have been designed to be resistant to water damage. I was impressed. At breakfast I asked Steve if he would prefer to be cremated of buried, and he opted for cremation.
I didn't feel well enough to go to church this morning but I went anyway on the grounds that I would feel just the same at home. Murray preached on the Lord's Prayer, and I spoke to him afterwards, with wonder that he is able to handle preaching twice on a Sunday.
When I got home, L-A told me Steve had been hallucinating about getting a job that paid time and a half, he had dressed himself in outside clothes, put on shoes, and now he just had to wait outside to be picked up. Had she not been there, that's what would have happened. At one time in the afternoon he found L-A's towel, drying after she washed her hair. He tried to spread it on the floor, but I took it from him and back to the bedroom. A few miutes later her referred to me as 'old sourpus.'
I sent Lynn and birthday letter (tomorrow she would reply in very friendly fashion). I thanked Neesa for her card card for Christmas.
Sat Jan 14
I got my B12 shot from V in the Eringate Clinic. James and I had an excellent video conversation on world events as I watched him eat his breakfast, 2 fried eggs on toast and ham, getting amost as much pleasure as he did, but I can't any more. L-A had made an excellent carrot and parsnip soup for lunch.
Late afternoon I was in the basement doing Steve's washing. As I removed the last few garments from the washer and put them in the drier, I heard a chinking sound. I looked down and had a real shock; my car keys were in the machine! Before even considering how they could have got there, I had visions of how we could survive the next few weeks without the car, as I obtained a new set of keys. It was a nightmare. Yet all my worst fears turned out groundless. I couldn't imagine how the keys got in there. None of my pants were in the wash, and I never keep the keys in pants pockets. I went upstairs to the bedroom to the place I always keep the keys - and they were there! The keys in the washer were a second set I dodn't know existed.
Steve must have found them and put them in one of his pockets. I always go through his pockets before washing clothes but I must have missed them this time. I couldn't imagine the keys would have survived the wash. I went into the living room and pressed the 'where is the car?' key, and faintly from the basement I heard the three beeps on the horn! Tomorrw I would see if they would start the car.
Fri Jan 13
Snowfall overnight brought our contractors out this morning, and I managed to ask one of them please not to scatter salt over our porch steps, which then gets walked into the house.
I called Cloverdale Eyecare, and asked about eyetests. It turned out my next free test would be in August, but cost $98 if I paid to have it now. Then the receptionist came up with a better plan, where I come in on Sunday and see the same optometrist who did the work on my glasses, all under OHIP.
I spent a lot of time today on an end-of-year task on my journal; getting each year correctly to link to all the other years. It's a very finicky HTML problem, but I finally got it working. It became harder to do as I changed the name from African Journal to Journal.
For dinner we had the 4th full meal based on the prime rib, the last two being stir fries where L-A had marinated the beef to soften it. It may be the last time we'll have a major beef meal, under L-A's new diet.
Thu Jan 12 Med
After Steve was fed, but before Laurie-Ann was, I drove to the nearest National Bank. After about 15 minutes the clerk gave me a yellow sticky with a temporary PIN, and directed me to one of their ATMs. I was to log on with the temporary PIN, and then key in my new PIN twice. It all worked. I then drew out $500 in cash from the Mastercard. Next I drove to the CIBC ATM on Rathbone and deposited the $500 in Simplii.
At home Steve had been causing trouble with his wanderings and curiosity. In his mind, he's helping with household chores. I found him emerging from our bedroom with a bar of my chocolate, one which my taste buds could tolerate. It actually made me angry and I threw the remnants of the bar at him; not a good idea or good carer behaviour. However, by lunch he seemed to have forgotten the incident.
I made an XE transfer from Simplii to FNB in Worcester of $R,500, about $400. This will be sufficient to cover Bella's immediate needs for hospital fees and university fees. She will get the money 3 days before we had previously told her based on waiting for Liam's rent. In the afternoon I opened up the main hose on the vacuum cleaner, found it was a third full of carpet dirt as I had suspected, removed the dirt with a bent wire coat hanger, and put the hose back in place. The vacuum cleaner then performed just fine. Made me happy.
Steve continued to give us a hard time with his antics for the rest of the day.
Here are some other strange things he has done recently. Foraging in the fridge at night and eating cold leftover roast potatoes; while sitting at the dinner table he'll pick up his pill bottles and examine them minutely, sometimes taking them out of the bottle, and then forget which pill basket they came fron: the morning one or the evening one; after a dinner when he had declined another helping, as he walked past the counter on his way to his room, taking an additional slice of pie and eating it with his fingers. This had nothing to do with whether he was still hungry,
and everything to do with the pleasure of taking food that hadn't been offered to him. Taking his teapot (which he pees in and has developed scale) to the kitchen in the middle of the night and trying to remove the scale with one of our sharp kitchen knives; having long conversations on an imaginary phone with his former colleagues in CN;
when frustrated with his TV because he can't remember how to change channel, pulling the whole TV over so that the power and HDMI cables come out. So far the TV has survived; refusing to take out his teeth after dinner, thus risking losing them during the night and not being able to eat solid food.
His hearing seems to have reduced considerably over the past week making it necessary to repeat everything, as he makes wild guesses as to what had been said to him.
His wasn't the only sense that was declining in the family. My eyesight was now making it harder even to read the computer screen. I would like to have another eye test and find out if anything is changing.
Wed Jan 11 Med
When I got up about 1:30 am for my midnight snack, Steve was soundly asleep on the white couch. I didn't disturb him as I made tea and sat on my favourite seat on the new couch. I slept more than an hour, and when I woke he had gone back to his room.
I made a similar breakfast to yesterday's, but with baked beans added.
Bella needs cash for her new term at university, but we are waiting for the 15th of the month when the $1,500 condo rent will come through. Even then it will take 10 days to reach her, jeopardising her standing as a student. The only answer is to redeem cash from a credit card, to give us some flexibility while we await the funds from the MoD. So it's urgent I do this.
I drove to the CIBC ATM and tried redeeming cash using two ancient passwords from Allstream. Didn't work. I went on to M&M for a pick-up. Back home I called Solutions Banking and they said if I go to a National Bank they will change my PIN while I wait. There wasn't time to do this today. I got lunch for the family and then went to my appointment with Dr Makar. I was expecting bad news about the prostate because because most doctors only call you in when it's bad news. But it wasn't. The ultrasound and transrectal didn't show any worrying trends, and Dr Makar said we needn't take any action, but monitor it a year from now. We really like this doctor! She gave me a new prescription for Flomax and I went home via the IDA where they filled it.
I noticed my letter for Lindholm was still on the floor where I left it. One of the pharmacists said he thought he would be in next week, and this week was working on the telephone.
I looked up Flomax on line, and the article recommended taking the pill 30 minutes after the same meal each day. On the news tonight was that the book Harry and Meghan had been published today and become an instant bestseller. We decided to watch the Netflix documentary of the same title tonight.
Tue Jan 10 Med
I must have taken the Flomax at the wrong time, or without food. or some other transgression because I had a terrible night; at least 10 times to the toilet. Because I was so tired last night I set my alarm for an hour later, and appreciataed the lie-in.
About 9:30 I served Steve with fried mushrooms, scrambled egg and toast, and I must say it was excellent, with no taste problems for me. Steve loved it. As he finished, Allison arrived. When she had finished washing him, he came back into the kitchen, although his breakfast was complete.
I went shopping at about noon, to the pharmacies and to Metro. At Shoppers I bought three nutritional bars. At the IDA I ordered more Tylenol #2 to be obtained from Dr Banerjee. I stuck the Dear John letter for Lindholm under the screen that separated his area from the pharmacy. I was home in time to feed Steve and then take L-A to the Ontario Diagnostic Centre. I had told them when I booked it on the phone that it was for a pelvic ultrasound, but when the receptionist saw the requisition she saw it was nothing of the sort, but to check her liver. I had had my tests on my mind when I booked the appointment. Anyway, she was kind to us (TKOG) and said she would try and fit her in. We only waited about 15 minutes. On our way home we first stopped at a European bakery on North Queen. L-A had bought beigli there in the past, but they had never heard of it now. in compensation I bought three Ukrainian/European treats. Then on to Loblaws. I wanted fruit cake - but they had none!
So I bought some alternatives for my midnight feasts. I also bought Yorkshire puddings to go with our beef.
Back home we were relieved to see Steve sleeping on the couch, since we had left him eating his lunch. He had been foraging - most of the cereal boxes were scattered and there was a half-eaten English muffin on the counter. A Quest energy bar I had left on the Deacon's bench was missing.
I was feeling stronger than this time yeterday, thank goodness.
Mon Jan 9 Med
I called the accounting department at Poulin and apologised that my condo fees last week had bounced. He hadn't noticed, but said he'd check and get back to me by email. This he did.
I took Steve to the hairdresser's and we both had cuts from 2 stylists - Ben was on a day off. I had forgotten they don't accept credit cards but one of the stylists mentioned tha LCBO across the corridor gave cash-backs, so we ended up with a bottle of Italian Cavit Moscato, one of the few on their shelf that isn't Pino Grigio. My stylist was Hungarian but when she tried to talk with Steve they didn't connect. Steve's excuse was that he only spoke pigeon Hungarian. Both haircuts were acceptably good.
In the afternoon I went to the Ontario Diagnostic Centre for an ultrasound on my abdomen, and a transrectal, ordered by Dr Makar. These are designed to check the status of my enlarged prostate. The transrectal deserved the technician's warning that this was going to hurt, as first he pushed two lunbricated fingers up my rectum, followed by a camera. I wasn't tempted to ask to see the pictures; will leave that to Amany Makar. Back home we worked on a large prime rib that would feed us for some time. I wasn't expecting too much, but come dinner time I was pleasantly surprised with the flavour and tenderness of the meat, which had been in the oven with a vegetable selection for several hours.
After dinner however I felt really fatigued, and not much company for my sweetheart, as we studied Luke and prayed to our faithful Lord. I took one Flomax pill before closing my eyes; for the previous 2 nights Flowmax had given me way more rest and absense of trips to the toilet than usual.
Sun Jan 8
I completed a letter to Dr Lindholm thanking him for his medical services for most of the last year, but saying the time had come to move on to another clinic. My stated reason was that the new clinic had a full-time receptionist so we would be able to communicate with the doctor. I didn't list our other reasons for being dissatisfied. He was always too busy to talk. Trying to get more hot flash pills for L-A had proved an impossibility. He had introduced a new system which relied on text and video on the patient's phone. Trying to phone him or leave a message was close to impossible. He had made no progress with L-A's disability tax certificate, but had not communicated with us on it.
L-A was well enough for us both to go to church. and it was a very special service. The complete management of the church welcomed Murray and Ash and celebrated how they had been chosen. Two of the readings were taken from the Passion translation. Oil was poured over Murray and Ash's heads (Ash used a towel before she spoke). There were many heartfelt prayers, that included Steve and Sandra as they become ambassadors, who will visit many of the 50 CTF churches in Europe, but will still be here a couple of Sundays every 6 weeks. I told Steve on the way out I had never witnessed such a service before, and encouraged him with brushing up on his European. There were sweet treats galore after the service and I collected a
lemon coconut square and hot chocolate for me (both delicious), and nothing for L-A under her new abstinence routine. We had seen Bob and Catherine and Paula before the service.
Switching to the end of the day we watched S4 E10 of Yellowstone on Prime Video. The later seasons switch to another streaming service. This is a magnificent production.
Sat Jan 7 Med
We went to our new doctor, Amany Makar, for a 'flu shot for L-A and a B12 shot for me, continuing the sequence interupted when I was late for Lindholm a month ago. 'V' is the name of the doctor's efficient assistant and she gave me the shot. Dr Makar had the results back from L-A's blood test on Thursday, and it showed all results normal except her liver. So now she has more tests.
Back home after coffee and cake I got the short ladder from the garage and successfully inserted a LED bulb, 40 watts equivalent from 4 watts, and therefore a lot less heat generated. I had bought 2 bulbs, so I put the second one in the other kitchen light fitting. And no shocks this time! I suspect the first bulb blew because it overheated inside the small glass shade. Hopefully this won't happen again
Next job was to stop the leak in the hose connection from the back was tap. I tried tightening it with a wrench without success. I did run the water for 15 minutes to water the little tree in the balmy weather. We have no other lengths of compatible hose so maybe I will buy some.
A few days ago I had done the totalling on my 'giving' spreadsheet since our arrival in Canada, and found it to be $10,480, a significant part of which would have been Bella's expenses. Today L-A calculated the total we had spent on food for the three of us as $14,527. That includes Steve's food, which he reimburses us for. If he is using a third of the food, that leaves $9.733 spent on us. Since we buy quite a lot of food just for us, like L-A's non-dairy products, the amount we are spending on charity isn't far off from what we are spending on our food.
We now have a date from Tara for a family conference, Sunday 22 January, when we will review with Tara (and John?) our first year of caregiving. I updated an agenda I had written a week ago, and got comments from L-A, before sending it to Tara.
Fri Jan 6 Med My 9th infusion
I needed to leave the house by 9:15 so breakfast was rushed, but it all worked out well enough. I arrived on time in the Chemo waiting room. Quite soon after receiving my pager I went down to Tim Hortons, and got a breakfast sandwich and coffee. The bacon and egg in the sandwich tasted normal, so what's happening differently at home?
After an hour or so I struck up a conversation with the woman next to me and she was quite ready to chat. I asked her what she thought about the 5 days so far that the Republicans had failed to elect a speaker, since that item was on the TV news. Her reply was dismissive of politicians generally. After that we talked about many things. She was from Scotland and still had gaelic connections. She had fairly serious skin cancer, and had had two growths surgically removed from her legs. She came in by train from Barrie. Her name is Gillian with a hard G. I asked about her religion and it is Presbyterian. I asked if I could pray for her, which I did, and then she prayed for me, which I didn't expect. Shortly after that my pager went off, and I probably will never see her again, something we had just discussed.
My nurse for the infusion was Carrie, and it took a couple of hours without incident. On the way out of the hospital I bought sesame snaps and two chocolate bars and ate most of them on the way to Kipling.
Thu Jan 5 Med
We had been given three requisitions for tests by Dr Makar, two for L-A; one for me. We went to the lab across from Etobicoke General Hospital, and Laurie-Ann got hers done. We went home via Renforth IDA and filled some presciptions for L-A, including the hot flashed medicine that had precipitated the problem that led to our switching from Dr Lindholm. After lunch I went to the lab on North Queen but found they work by appointment, so I made one for Monday at 2pm.
Wed Jan 4
My main concern with my 3 weekly visit to PMH today was getting there without physical mishap, but I made it, despite the rain, arriving for my blood draw on time. I had drunk a whole Monster before leaving home and that helped.
Then quite a wait before my thoracic oncology appointment, but I'm used to that. First Dr Fowler came in with a Spanish trainee, Carlos, and checked my vitals. I told her that for the past 2 - 3 weeks my breathlessness and fatigue and weakness had been twice as bad. She tested the strength in my arms and legs and asked a bunch of questions. She mentioned the possibility of thyroid issues and said she would check the latest blood results when she had them.
According to the resuts I see on the UHN Patient Portal, the thyroid is not checked in my regular blood tests. Dr Fowler then brought in Dr. Bradbury. My main quesion was abut the general rogression of the illness. Can I expect the deterioration I have seen to continue till I'm unable to move, or is it caused by separate activities and might it be dealt with. I don't think she knows the answer at this point, or whether the condition os caused by mesothelioma or by immunotherapy.
She is concerned about my ability to cope as a caregiver in the future and said she would organize a social worker to advise me. We talked about our new Dr., Dr Makar, and I felt we should see how she shapes up. If she doesn't there is the Toronto Western Hospital Family Health Care Team to consider, and provide services like a GP. In all it was an excellent meeting. I got hoem in time to cook the rice for the stew L-A had prepared.
Tue Jan 3
First thing, I checked email and was delighted to read this from Norcross:
'Good morning and Happy New Year to you too
We have had possible problems with emails today so you may have two from us with the same details, this being the second.
It was to confirm that all the details we have sent to our finance department are correct so please do not worry.
It does however take a little time to set up overseas payments since they go via our overseas service provider.
As soon as we have confirmation that the account has been set up, we will let you know.
Many thanks,
Kate Leach,
Payments & Maintenance Team 2,
Veterans UK'
Needless to say this message changed my state. I felt an immediate improvement in wellbeing. For the rest of the day I had extra energy and resilience.
For breakfast I wanted to confirm what happened yesterday, so cooked up beans on fried bread in the wok, with the beans well fried, the way I have always loved them best. Same problem. Just didn't have the taste of Heinz original beans. Steve however ate them without hesitation.
We all bundled into the car to see Dr Silver at 11. I used the 'time' facility on the parking machine, just booking us in for half an hour for $2.25, instead of $9. I suggested to Dr Silver that Steve not see him so often, since it is so hard for him just to get into the car, and in my view his toenails were not bad enough to warrant coming so often.
I also asked him to adjust my left orthotic instep a little lower. At the checkout I booked Steve's next appointment for early April, 3 months ahead.
At 4 we had our first appointment with Dr Amany Makar at her surgery within the Eringate pharmacy. Her receptionist was there full time. She started by getting basic details down, and I gave her the written summaries of our medical situations which we had prepared over the last few days. She took full account of these, asking us questions arising. She picked up on things like why no-one was monitoring my prostate and arranged a transrectal examination with a specialist.
She was efficient and friendly, and gave us her time without rushing. At one point she asked who was our family doctor, and I answered, "You are."
Laurie-Ann got the three prescriptions she needed, one of which had precipitatied the switch from Lindholm. We went to Renforth IDA on the way home and collected all three drugs.
L-A had had a painful day, as if her strongest medications were insufficient for the task.
Mon Jan 2
Baked beans on toast has been a favourite comfort food of mine forever. For breakfast I subjected Steve to it and he liked it. For me it seemed tasteless. Maybe I'll fry the beans next time.
L-A slept in till after 12, trying to get rid of the final manifestations of the virus, and before she went to sleep tonight I put Vicks on her chest, reminding me of the Avian Park girls, particularly Jamelia.
I emailed K Leach at Veterans UK to be sure he would see mine of 28 December, and to ask if the money had already been sent. He is back from vacation tomorrow.
Sun Jan 1
I awoke feeling ready to go to church for the first time since 4 December. Not so L-A. When I arrived I spotted Catherine, and waved. She waved back. They have been in Prince George at the bedside of her brother-in law Lawrence for several weeks but came back last night. Today was history at Catch the Fire as Steve and Sandra officiated for the last time before becoming ambassadors, which will take them visiting the many CTF churches in Europe. The service ended with two fire tunnels, one at the front which I went through, and another at the back for youth. I found Bob and Catherine keeping the back tunnel up and whispered "Welcome back" to them before going home.
I came home via the CIBC ATM and banked Steve's food cheque for $250. At home I paid the minimum on my MasterCard. Tomorrow we'll be billed the AiO interest but won't get too close to the overdraft limit. At lunch I asked Steve if he'd like a dessert and he said "Yes." I also had one - a rice pudding. Its taste was very different from what it always had been, and I persevered only to get the nutrition. The taste buds are going further downhill.
We had finished our dinner that evening but were still seated at the table, when we both noticed that Steve looked as if he were falling a sleep. We weren't able to rouse him at first. It had all the hallmarks of a TIA coming on.
We were able to get him standing and holding his walker, though his legs looked as though they could collapse any time. I guided the front of the walker, and he gingerly brought up the rear as we moved slowly towards his bedroom. I was very relieved when he got there and was lying on the bed, and we hadn't had to try and lift him off the floor.
Tony Copple
Copples in Western Cape