… good news today, and some bad news.
The good news is that the Social Services have agreed to pay for my transport. That’s a great weight off my mind for sure.
The bad news is that it seems from the blood test results recently that not only is my red blood count dropping rapidly now that I’m no longer taking the Aranesp, but that the count of my platelets is dropping rapidly too.
12 months ago it was at about 275 units. Today it’s 115. The critical limit is 100 units.
The doctor from Belgium came to see me and to give me the bad news. In her opinion the carcinogenic protein is now attacking the platelets. It’s obviously not satisfied with attacking my red blood cells, heart, kidneys and nervous system
She’s no haematologist but at least, being from Brussels she can read Flemish so she’s much more of an idea as to what is going on at Leuven without me having to do my best to interpret, so tomorrow she’s going to see the haematologist to “have a chat” about me.
Whatever that means, we’ll soon find out.
This morning I was awoken by a nurse who came to take a blood sample – at 05:20. That was the last thing that I wanted. But to my surprise she did it first go. And that’s just as well because my arms are covered in Sticking plaster.
After that I couldn’t go back to sleep so in the end I gave it up. Mind you, I still had breakfast in bed. The food here is somewhat … errr … indifferent but two bread rolls, a pile of jam and a big bowl of hot black coffee is a good way to start the day.
First thing that I did was to transcribe the dictaphone notes. I was involved in some kind of project with the radio and the programmes. The Social Services etc wondered why they were played when they did. Someone explained that that was when they had a good audience. The plan was that after my death they intended to continue to broadcast the programmes just to keep things going over and to prolong the radio station;
Later on Nerina and I had an appointment with a local bank manager at 12:00. We set off on foot and on our way round we picked up a few bits and pieces of shopping and carried on to the bank’s office. When we arrived we rang the bell but no-one answered the door so we rang again. Eventually someone came and wanted to know what we were doing; We explained that we had an appointment so we were ushered in and kept to one side. A few minutes later someone came back and said “yes, you can go upstairs. Go into that room there, slide the ladder up and you can climb up to the next floor. We went in there and there was one of the strangest arrangements that I’ve ever seen. There was indeed a ladder there and four steps hanging down from the ceiling. The ladder was extensible and you would push it up to join up with these steps. It was narrow, rickety and looked completely unsafe to me. I held it steady while Nerina tried to climb but she couldn’t get up. I knew full well that I wasn’t going to get up. After several tries Nerina decided that she couldn’t go up there. I agreed with her because this was the biggest Health and Safety violation that I’ve ever seen. We went back to where this secretary person was. She was busy typing. We explained that we couldn’t go up the ladder. She sighed and went off to try to find someone else again. We had a good look round and found several interesting papers about different things that had been prepared in duplicate or in multiple copies. There were piles of these documents lying around. One was about a certain man whom I knew from North America who had died. He was said to have been the biggest promoter of Rugby League in the UK and of summer sport. It bewildered me why this stuff was here. Eventually a man came back with a couple of items that he must have taken from our shopping bag. He asked us if we recognised these items. We explained that we’d bought them on the way to the bank. He asked which shops we’d gone to to buy them. We explained and that obviously satisfied him because then he invited us into the office and up some proper stairs onto a landing where there was a corridor that led outside but without a roof and then up another set of stairs in another building until we finally reached his office.
Finally I was in my yellow Cortina last night driving through Shavington. I suddenly realised that I had the wrong numberplate on the front of the car. I’d bought the correct numberplate to fit on but I hadn’t done it at that moment so I pulled up at the side of the road, lifted up the car so the automatic jack clicked in and then went to fetch the numberplate out of the back. But then I noticed that screwed to the rear was a numberplate from New Zealand0… "South Africa actually" – ed … and I suddenly realised that I’d had this car registered in New Zealand so the front numberplate that I was going to fit on wouldn’t be any good. I’d have to have another one made. I went round to the front and a postman pulled up on one of these little Mobylettes, had a good look tat what I was doing and then rode off into his drive. I then picked up the front of the car and dropped it off the jack onto the ground and it just rolled off on its own, backwards across the road, did a spectacular spin round and shot off down the pavement. People just stood there looking at it and no-one made an effort to stop it. It ran into the back of someone’s car. I had to go round and apologise, and explain everything. They all found it hard to believe but that was certainly the case of what happened. I had to apologise for the accident.
With no tests or examinations scheduled today I planned on having a shower – and I don’t ‘arf need it.
However each time I prepared myself to go, someone came to delay or interrupt me. It wasn’t until 15:45 that I staggered into the shower.
Luckily, here it’s a walk-in wet room so I was quite at my ease and I really enjoyed myself. It made such a change to actually be in a shower.
While I was at it, I made a few phone calls. Firstly to tell the taxi company that my transport has been approved and secondly to book the vehicles to take me to the sessions at the Centre de Re-Education.
And then I had to telephone the ergotherapist to cancel our appointment next Thursday afternoon. He thinks that there’ an ergotherapist at the Centre de Re-Education and maybe they could help me. If not, I should recontact him for another appointment.
In between everything I’ve been attacking the radio programmes. I’ve chosen the music for another three of them. I’m trying to make the best use possible of my time while I’m here to give me a running start.
It also seems that I’ve been in great demand today. Rosemary rang me up and we had another one of our mega-discussions. And then I’ve had discussions on the internet with half a dozen people, or maybe even more. I lost count at a certain moment.
So now that I’ve had my tea and written my notes I’m off to bed. I’d like to have a running start with that too if they are going to wake me up at 05:20 for another blood test.
But what will be the outcome of this meeting tomorrow? One or two people have told me that I should be looking at it with trepidation but actually I’m not. I’m under no illusions whatsoever about the inevitable outcome of this illness and I’m fully prepared for it.
However it shows signs of optimism. They have found something, and they are intending to do something about it. You can’t wish for any more than that.
