Tag Archives: ill health

Friday 12th April 2024 – TODAY I HAVE HAD …

… probably the worst day that I have ever had in my whole life.

Most of the day has been spent in a state of semi-consciousness curled up on my chair, hunched over the computer in a fit of total and absolute fatigue.

It goes without saying that I have never felt so tired in my whole life.

Last night I was quicker than normal running through the jobs that needed to be done and I was actually in bed for 23:20.

And when U awoke, at 06:20, for some reason I was convinced that it was Sunday – really convinced – and looked forward to the extra hour in bed. So when alarm calls started going off at 07:00 my initial response was to reset all of the alarms to 08:00, and I was well on my way to doing that when it clicked.

So somewhat later than usual I raised myself from the Dead and went to check the blood pressure machine. 15.9/10.0, compared to last night’s 14.1/10.4. The heartbeats were interesting too – 80 this morning compared to 72 last night. The heart has beaten as low as 61 before though, and that’s interesting.

After I’d had the medication I started to make the bread before the nurse arrived so that it would be proofing while she was here.

She was impressed with it and that’s no surprise because it was another good batch. She managed not to put her finger in it anyway But regrettably I had the first of many crashings out and it was 12:15 when I could get to it again. That really was a crashing out.

Having prepared my bread for baking I crashed out again and as a result breakfast ended up being well after lunchtime.

And then I crashed out again

While the cleaner was here later on I managed to do half of the Welsh homework for this week. I’ll have to dinf some more time and enthusiasm to do the rest one of these days.

And than I started the dictaaphone notes, of which there were more than just a few. I was changing a cylinder head on a Cortina mkIV or mkIII or mk V. One of the things that was useful was lining up a few bolt holes in the back of the exhaust. I was lying there trying to line up these three bolt holes and it seemed to be taking for ever. I hadn’t realised at fist that one of the bolt shad been body-fillered over so I had to chisel that free. Then we were encountering all kinds of other difficulties like that. It was becoming really dark and it had never taken me so long to do it. In the end we stopped for a cup of tea but I was determined to go back outside, crawl underneath and carry on. One of the guys there said that he didn’t think that it was necessary to do what I was doing. I reminded him that I’d met him the very first time few years ago and we’d had an interesting discussion about changing heads on Cortinas in those days and I’d remembered almost everything that he’d said, word for word so I was perfectly sure that I had to line up these boltways perfectly before I could finish off the job of changing this head. It was just becoming really so complicated and awkward. There was no need for this. It was just that everything on these vehicles was so old and rotten. Nothing was lining up at all in the way that it ought to because of rust and rot etc

Anyone care to guess how many cylinder heads I’ve changed on a Pinto-engined Ford? And I’ve never had any cause to play about with the rear end of an exhaust. However it’s true to say that rust and rot were responsible for a great many difficulties that were encountered when working on old Fords. You’ve no idea how much more comfortable it is working on modern cars, assuming that you actually can work on them

And then we had a dream completely in French Il y a l’histoire d’un jeune adolescent qui est mort. Il a été grand fan des groupes de rock et que sa copine ecoutait tooutes des émissions de rock pour des nouvraux groupes à coté de son temps pour reaconter l’histoire et jouer comme l’hiver et expliquer comment va aux festivals et théatres de sa parte pour continuer le rock mais son père n’est pas du tout content qu’elle continue le schedule

And then the next dream is the story of a young boy who is confined to his room etc. His father has died and his mother had collected up all of his music and things like that and is giving into a charity shop. The boy thinks that it’s terrible that all this history is being lost like that. He wants to have it and wants to continue the tradition of his father but his mother is dead-set against it and it’s causing an enormous amount of conflict within their house, who’s going to do what and how.

That’s my big nightmare too. All of the stuff that I’ve collected and created, all of which is of real importance and it will all br discarded and forgotten after all the time that I’ve spent assembling it all together. I really need to appoint as my literary editor someone who knows what I’m trying to do and realises the value of it all.

But that’s going to be next to impossible. No-one will care half as much about my work as me myself

This is a story about someone called Fileul ere was a passenger, Amy with her Uncle Peter who ended up at the airport. Peter arranged to be dropped off at the main building, said “excuse me” and disappeared. Amy was waiting for quite a long time, holding up the traffic like that, making people outraged. In the end she decided to move her vehicle somewhere else and went to look for a piece of paper on which she could write a note. Instead she found, crumpled up on the floor, for “Peter Fileul, flying to Amsterdam” that very afternoon. She parked up the vehicle and went inside the airport where she actually found a friendly policeman and the two of them caught Fileul just as he was about to pass through the departure gates,

And there was a rock musician called Peter Fileul too. He played keyboards in The Climax Blues Band, East of Eden and The Parlour Band. I’ve featured quite a few pieces of music by his groups in the past

Finally I was running a class of creative writing, consisting mainly of girls wanting to write chicklit. It was a very full class and the students could be identified by the colour coding of their machinery in order to work out which speciality they would be following during the course. But it was all a very high-intensity course with a lot of screaming adolescents who would go berserk at the drop of a hat.

Could you imagine me running a class like that? I’d be deafened within a week with all of these over-enthusiastic adolescents all trying to be the next millionaire But it’s an interesting idea.

Fighting off yet more waves of sleep I struggled on until teatime when I had a baked potato, salad and vegan burger. I wasn’t feeling like much.

But now I’m going to bed. It was a horrible day so here’s hoping for a better one tomorrow, a Saturday, starting at 07:00.

It’s necessary to tell myself these things just so that I know. But at least all those people who keep saying that I don’t even know what date of the week it is can be proved right.

It’s like the guy with a heart issues who was told not to make love to his wife when the day of the week ends in …DAY.
To put temptation behind him, he sleeps in a separate room from his wife
After about a week he’s awoken by his wife shaking him
"What day is it?" he asks, disorientated
"Tuesdray" replied his wife
"Nonsense" retorted the husband. "You’ve come in here to kill me, haven’t you?"
"Not at all" replied the wife
"Good" said the husband. "In that case I’m coming into your room to die"

Saturday 6th April 2024 – TODAY WAS ONE …

… of the worst days that I have had for quite a while.

In fact, it’s a day that harks back to the bad old days of winter 2015-16 when I was struggling to come to terms with this illness, or over the summer of 2015 when I’d moved to live in Leuven

It’s a combination of two factors really.
Firstly those stabbing pains that I have nin the sole of the foot returned yesterday and gradually worsened as the day wore on and accelerated through the night.
Secondly I was wide-awake at about 04:30 and there was no hope whatever of going back to sleep.

It totally beats me as to what would have awaken me, and awoken me to such an extent that I couldn’t go back to sleep, even at that time. It must be something quite considerable and important, so I’m surprised that I don’t know what it is.

What I was going to say was that I didn’t have a clue, but I doubt whether there would be many people who would disagree with that diagnosis.

And as it happens, I do have a clue about what time I went to bed last night, and it was late yet again, which is even more surprising considering how early I awoke.

But doing all this paperwork and making all these notes really does take its time and I’m surprised that I’m ever ready to go to bed.

So having settled down to go to sleep I was soon awake again, drifting into alternate fits of wakefulness and sleepiness, but always being awake nevertheless.

And that didn’t stop my imagination working because even though I was in this semi-wakefulness I was still off on my travels.

When the alarm went off at 07:00 I’d already been up and about for 15 minutes and was on the point of finishing dressing and going for a wash.

Not before checking the blood pressure though. 16.1/9.9, which compares with last night’s figure of 16.4/10.1 – pretty much the same by the looks of things.

After shovelling down the piles of medication I arranged the room for the nurse and then tidied up the knives and forks etc from the previous evening. If I’m having house guests, which looks pretty much like it in the near future, I need to learn some new habits.

Rather like the man in church praying to God – "Oh God give me patience! And hurry!"

When the nurse came round he plastered me up again but said that this will be the last of them as the foot has healed so well.

As it happens, I think that the foot has certainly healed but not as well as he thinks. Still, he’s the nurse, I’m not.

After he left I made a start on the dictaphone notes from the night and from the morning when I was half-awake. And apart from what seems to be the usual fact these days of getting up, getting dressed and ready to leave the bed but only in my subconscious mind (as far as I know), also later on there was a phantom doorbell to say that the nurse had arrived. That was at 03:00 and so it was extremely unlikely, but nevertheless I found myself getting out of bed for that as well. I’ve no idea what’s going on with me at the moment. This is crazy.

What this next dream was about was a woman who was visiting the doctor’s for some reason. He gave her an examination . Then someone like Ingrid came along. Because she was more ill he gave her the more profound examination and had to make sure that she was supported by enough orderlies but she could withstand the pressure that he was going to apply. It was all to do with rolling balls Up and down the body to find weak points. Obviously he’d roll them quite hard and then feel the resistance, to see where the body was in need of reinforcement

And before anyone says anything about it, I shall say myself that that particular dream sounds like a right load of balls. It’s an interesting concept though and I bet that there’s plenty of mileage in an idea like that if I were to take it to some of the more obscure clubs in Soho

In fact I could probably make a small fortune from clubs like that for the rights to the unexpurgated version of this blog

And then while I was lying there half-asleep Nerina and I were at a port somewhere on our way to cross the Channel to go to a party at a friend’s house. We didn’t have any preparations at all – we didn’t have a GPS to find out where it was, we didn’t have any accommodation booked for Nerina or anything like that. We were going to simply improvise and make it all up on the spot. So we boarded the ferry and I went to look out of the window but they were all misty and steamy so I asked the purser if he had any car windscreen wipers. He chuntered but had a really good search, chuntering all the time. Eventually he came up with a pair and handed them to me, which I thought was nice. I could sit down then and look out of the window to admire the shipping like I usually do.

And this brings back many happy memories of me being invited to a party and setting out to go there, and suddenly realising that I had no idea of the address or where the person lived. I drove around in circles for quite a while before in the end I gave up and went home.

As Kenneth Williams once so famously said, "I’m often taken aback by my own brilliance". It’s the kind of thing that only I can do.

Meanwhile back at the ran … errr … bed, this thing about Normandy involved the Normandy group on Social Network. In the end we’d sacked all of our advisers and dealt with everything on a question and answer basis amongst ourselves. That even included the vets. Everything there on the group seemed to be going much better since we no longer had advisers and people were resolving their own problems like this

In my case though I’ve simply sacked my Social Network. It’s becoming less and less of a Social Network and more and more a vehicle for adverts and publicity. If I wanted to see “sponsored links” and “suggested for you” articles I’d look for them. I don’t want them thrust into my face at the expense of stuff that I want to see.

So I went for my coffee and cheese on toast for breakfast and despite two really strong mugs full of coffee I crashed out quite completely and absolutely, and for a good couple of hours too.

And Nerina came to visit me again, but it wasn’t a very pleasant meeting so I’m not going to transcribe the notes. With all of these problems I’ve been told to do all that I can to avoid unpleasantness.

In fact, this illness has made a whole new person of me.

What I can say about it though was that the dream was building up to a ‘phone call, and sure enough, I had one too, and a real one. It was the delivery man with the rest of my Amazon order.

This afternoon, I really felt like death. It was the worst that I have felt for quite some considerable time.

Margaret Thatcher once famously said something like "anyone can do a good day’s work when they want to. To be successful, you have to do a good day’s work when you don’t want to" and I’ve ploughed nevertheless through some radio notes and a pile of Welsh homework when all that I wanted to do was to go back to sleep.

There was football on the Internet later, Aberystwyth v Penybont. Penybont are far too good a team to be involved in a relegation scrap where they are right now, but Aberystwyth are down near the bottom for a good reason.

And that was how it went on. Aberystwyth started well and had a couple of chances but faded quite quickly and Penybont took control.

A 3-0 win was probably about right but Aberystwyth will rue the errors that they made. However it’s not easy playing football in a monsoon like they had this afternoon during the game.

Tea was baked potato and salad with one of the delicious breaded quorn fillets that I like, and that’s it for the day. I’m off to bed, with an alarm for tomorrow as the nurse will be round.

And tomorrow afternoon I have biscuits to make as I have now run out of supplies.

But before I go, talking about obscure clubs in Soho and unexpurgated versions of writings reminds me of a former girlfriend who worked at the local library on Saturdays and who has featured on these pages on more than just a few occasions.
She was asked to order a pile of books so she was going through the list, and one title caught her eye
"What’s this book here?" she asked
"It’s called ‘Ferry across the River Kwai’" explained her supervisor
"But is that title right?" she asked. "I’m sure that it should be called something else"
"It’s all right" said the supervisor. "Don’t worry. It’s simply the unabridged version of the story"

Saturday 6th January 2024 – I AM ABSOLUTELY…

… wasted. i4ve had a horrible day today, probably the worst that I have ever had.

You’ll remember the perfusions that I had and the hallucinations that went with it. Well, the story continues.

At 23:30 or thereabouts two guys brought a stretcher here and I clambered aboard, to be whisked off to another building here for an echograph on my lower stomach and kidneys.

When the echographist had finished, the ambulance brought me back here.

When I was tucked up in my nice little bed a nurse came round and coupled me up to another perfusion, and we started again with the hallucinations.

At first I tried to dictate them as they happened but I was totally overwhelmed. I managed so many and then that was that.

Unfortunately none of my favourite characters appeared to calm me down. Things were completely and utterly out of control. Every time I closed my eyes that was that – I was off again. It took hours for me to go to sleep.

It was quite early when I awoke too and I had to wait around ages for breakfast. I was starving.

But today, I’ve been totally out of it. This perfusion, which is a mixture of sodium chloride and calcium chloride, has finished me off.

The doctor came round to see me too. I have a critical level of creatine in the kidneys and a critical level of potassium in the bloodstream. The perfusion is intended to counteract the potassium.

When I told him about the side effects he didn’t really say very much, which surprised me.

And the side-effects are the hallucinations and the fact that I have been out of it all all day, as if someone has slipped me a Micky Finn. I’ve hardly been able to function at all and for much of the day I’ve been asleep. The rest of the day, I’ve not been able to concentrate at all on anything.

To transcribe the dictaphone notes it took ages – firstly because I was in no fit state to do it and secondly there were so many of them. And as usual, they are shown here exactly as I dictated them, with no apologies or explanations. There was a lot of noise during the night and a lot of dreams too. I dreamt once that they were making really loud noises removing some kind of perfusions out of the way of everyone whom I knew, including people like TOTGA, Castor etc but I couldn’t really see who they were. It turned out that they were nurses here tidying up. One of them awoke me to give me a perfusion in the arm.

Almost immediately going back to sleep I dreamt of being pushed around on a stretcher by a couple of young people, one of whom was playing the accordion with a lot of traditional folk melodies playing on it.

While I was awake having this perfusion I had a hallucination again. This time I was being pushed by someone in a wheelchair. They said that they were going to take me to somewhere where they would put me in a sitting position. Once they’d done that they’d take me to a place where I could sit which was much more exciting than where I was at the moment.

Also 2 women pushing me in a wheelchair to a Renault Espace but it looked nothing like a Renault Espace at all and was all glass so that everyone could see everything that was going on inside it. I was taken in this wheelchair by these 2 girls, put inside the Renault Espace which was driven to another part of the hospital where a couple of guys were waiting. Once our car arrived and unloaded me these 2 guys took over and began to push me. But I was actually awake and conscious and lying in my bed in the hospital when I was having this hallucination. It certainly wasn’t me being asleep and dreaming

Later on I was in an Indian Restaurant with a couple of people. We were chatting away. I went over to a drawer, pulled out a cheque book from there and wrote a cheque for £95:00 to the bank. One of the people watching asked me why. I said that I had debts to pay. He said something like “don’t we all”. He wondered how much it was o I showed him. It was £495:00. He said “you’ll pay that quickly paying it at that rate”. I said “it should only be £75:00 but I’m paying it in advance”. He actually shook my hand. Then a server came to see us but but was actually someone with the head of a cash machine so I fed the cheque into it. We began to talk about soup so me, the man and his young daughter sat down at a table where there were already several people sitting – it was a long bench-type table with benches either side. The guy said “you’d better go and ask the chef – he mentioned the chef by name but I’ve forgotten – because he’ll have soup that he’ll want to get rid of at the end of the night.

Then someone asked me to raise my pelvis so that they could close the ambulance doors – while I was still awake. These hallucinations are incredible.

I closed my eyes and I was immediately in a taxi queue, still in my wheelchair. There was all folk music going around. Even now as I’m dictating this I can hear folk music played on a violin. It really is strange because there’s nothing happening outside at all – it’s all in my head, whatever it is that’s going on. I’m wide awake and I’m just hallucinating like this every time I close my eyes.

They were waiting outside there questioning, joking, reduced to a question about pyjamas. I was ….. unintelligible … that was my job for the evening. Those projectiles on the bed ….. unintelligible … The room of mine was downgraded from mid-dangerous to less dangerous from a security point of view after a security patrol had been to inspect it. Someone could fire into the room but they wouldn’t be able to actually hit anyone so it was considered to be a very low risk at all.

There was a song rather similar to THE BARRICADES OF HEAVEN. I’d recorded it twice and wanted to dictate one. The thing was that one of them was in really perfect condition and sounded really well but there was only threequarters of it but the other one which was complete, the quality wasn’t as good so I was trying my hardest to figure out a way to make a complete one using the quality of the best one. But in the end I ended up deleting one of them, the one with the best quality because it was incomplete. Then I had second thoughts of re -recording it. I was sitting there scratching my head puzzling over what I was going to do

Despite being in the kind of condition in which I find myself, I’ve had some nice chats with my neighbour from Granville, with Liz and with Tina over the internet and that was really nice. The nursing staff here are nice to and bring me extra coffee, bread and fruit to make up for the food that I can’t eat.

They have bandaged up my leg where I have skin issues and done all they can to help me. One of them was very interested in my story about hallucinations too.

We have rock music fans amongst them too and I’ve had a couple of interesting chats. Apart from the perfusions I seem to have struck lucky with this hospital. Castle Anthrax was nice of course but things seem to be much more urgent here in The Land Of Yellow And Orange

Anyway, tonight there are no perfusions planned so I’m hoping to have a good, deep sleep and see what tomorrow might bring. And if it’s any more calcium chloride I’ll go spare.

But they are doing their best to treat me and if they think that something is necessary, who am I to complain? I’ll just have to take the side effects in my stride and suffer accordingly.

"SO PLACE YOUR TRUST IN SCIENCE
FOR IT HAS COME SO FAR
WHERE NECROMANCY LIVES FOR EVER
PRESERVED WITHIN A JAR"

Tuesday 12th December 2023 – THE DOCTOR CAME …

… round here at the end of the morning, with a student trailing along behind.

As he walked into the apartment he looked at me and said "it’s getting worse, isn’t it?"

Considering that when he saw me a year ago after my torrid three months away from home he told me quite frankly that he thought that I was dying and that I wouldn’t pull through, his comments today weren’t exactly encouraging. How much worse can it be?

It has left me with the feeling that the clock is winding down rapidly now and the first thought that came into my head when Frodo and Sam were staring despair in the face near the end of LORD OF THE RINGS
"Have you thought of an ending?"
"Yes, several, and all are dark and unpleasant."

He was insisting yet again that I ought to see a therapist (read “psychiatrist”) to help me come to terms with “events” but as I have said before … "and on many occasions too" – ed … anyone who sees a psychiatrist ought to have his head examined.

And I really would feel terribly sorry for whoever it is who draws the short straw and has to probe the depths of my subconscious mind.

Actually, I don’t honestly think that he’s too far off the mark because I haven’t had a good day today.

It was another disturbed night and an early start in the morning because I ended up not being able to sleep all that much.

After the medication I had a few things to do and it ended up being another nostalgic trip down Memory Lane. And as PG Wodehouse once famously said, "memories are like mulligatawny soup in a cheap restaurant. It is best not to stir them"

Eventually I managed to sit down and transcribe the dictaphone notes. I was going through editing my blog last night. As well as that, I was comparing a few web pages to check on things. I came across 2 that were absolutely identical so I deleted one of them. It wasn’t until later that I realised that one of them was actually the copy on the hard drive and the other was the copy on the server. I needed to have the two copies of course but I couldn’t remember the name of the file. I then had to go all the way through, count the files and compare each of them one by one. This led to its own complications because the only way to identify the different web pages was by the images on them but I kept on losing count. A couple of people there were trying to help me but they weren’t particularly helpful. There was one occasion where I missed an image and just wanted to go back a short way but she reset the machine that she had so that it went right the way back to the start so we’d have to start all over again. I had a feeling that this is a job that is never ever going to be finished because no matter how many times I make a start on it I can’t keep my concentration going long enough to count all of the web pages and images correctly (and doesn’t this sound so familiar?) and I’d just keep on slipping up every time. I’d never find this missing file that I deleted in error.

I was then doing something different with the blog. I was trying to prepare a report of each and every football match that had taken place over the last 4 or 5 years. I had some notes and we had some old newspapers. By going through them we were able to make some kind of rough approximation of what had happened the previous season and were able to make some kind of report of each game that had taken place so that with the aid of a couple of very small children I went back and did a couple of years. That seemed to work fine. I set a little task and sent the children away to do the previous years but I was rather over-ambitious with that and the children weren’t able to do it. A couple of parents came to see me and in the end we all sat down, had a talk about it and went to work it out. One woman complained in a light-hearted way that I was speaking Geordie to them but another one replied “no, that’s Scots” and they were all being rather confused by my accent. I actually awoke before we finished it. But someone had asked me about how many years back I was going to do. I replied that that would be the last one because we couldn’t rely on having copies of the newspapers any further back than that. Without access to any records it was going to be practically impossible to complete.

Later on last night I was in Leuven, preparing to go to do my shopping. Then a flyer came round from LIDL. I thought to myself “I haven’t been to LIDL for months and this would give me a good opportunity to go”. I didn’t know where the LIDL was in Leuven. I’d have to have a look at the map to work out a route. 5 minutes later found me out in the street and I’d forgotten to look at the map. I was wandering off, daydreaming as usual down the road and almost ended up driving through a red traffic light. All kinds of traffic came to join me at the next traffic light. There was a while MkIV Cortina saloon full of people etc. Then I suddenly had a brainwave about where there might be a LIDL – miles out of my route but I may as well go while I’m out. I began to plan my itinerary about what I was doing, where I was going and what I was going to buy while I was sitting in the van at the traffic light.

Rapidly changing country, I was at the Centre Normandy, somewhere like that, standing at the reception when a giant rat scurried across the room. I picked up one of these pointed letter-openers and threw it at the rat and skewered it straight away. I felt really impressed with that, except of course that the idea of a rat running around somewhere like that is horrible.

Finally, we were in Virlet preparing to come back north. Someone had already heaved a brick through the windscreen of the Ford Escort so I wanted to make sure that everything was properly burglar-proof. One of the windows was rather badly-damaged and was easy for anyone to try to come in that way so I was trying to find some string to secure it but I found a piece of wood that was exactly the correct size to blank it off. I went looking for my drill, screws and bits. I found them lying around on the floor in all kinds of places where I’d left them the previous day when I’d been working and been too tired to put everything away. I began to collect everything together to prepare. I can’t remember who I was with now but Percy Penguin was also there.

There was some more stuff than this but you really don’t want to read it, especially if you’re eating your meal.

After a good wash I prepared for my Welsh lesson and it was a disaster. Nothing whatever would sink into my head today. And being disrupted by the visit of the doctor didn’t help at all.

The car came for me later to take me to the Centre de Re-education and I don’t know why, but I fell into the pit with the Black Dog. And fell quite deeply too.

Not that that usually bothers me because I’ve fallen in there many times before, and sometimes much deeper than this, but I’ve always consoled myself with the thought that when things are really bad, they can only improve. However, at the moment, it’s difficult to see quite how.

Severine pulled and tugged me about for half an hour and then I had the ergotherapist who discussed her report with me.

Back here later I made my hot chocolate and biscuits, and then promptly crashed out.

The hospital and I had a chat at some point. My visit on Monday is now cancelled and I have to come on Tuesday, as previously advised, instead. However it still involves a stay. But that’s next week. There is still plenty of time for further changes before then.

My cleaner came round too. The doctor had given me a prescription for more medication so I’d sent her a message to ask her if she could fetch the products. I warned her that she’d need a shopping trolley

Tea was a taco roll, and there’s enough stuffing left over for a leftover curry tomorrow.

There’s the Centre de Re-education again tomorrow and then I’ll finish off the radio notes. I waded through a pile of them earlier before tea and I’ve done about 70% already.

But right now I’m exhausted again so despite how early it is, I reckon that I’ll go to bed. Not that it’ll do me much good but I have to show willing.

Monday 11th December 2023 – IT LOOKS AS IF …

… showers might be back on the agenda at some point in the not-too-distant future.

The ergotherapist came around with a selection of useful gadgets and appliances for helping me and we managed to figure out something that I could adapt to help me into the bath and to stand up for a shower.

It’ll be a while until it arrives of course, because there are all kinds of hoops to jump through, and it’s a question first of awaiting her report and recommendations. That won’t be any time soon, I bet.

And then there’s also the question of whether I’ll be still here when it arrives. The way I felt today, that isn’t necessarily going to be the case.

It doesn’t seem to make any difference whether or not I go to bed early. Or whether I’m still fast asleep when the alarm goes off. Both of those situations took place through the night but the end result was still the same as usual – me flat out on my chair later on in the afternoon.

At least there was sparking water for my medication, flavoured with a dash of grape juice. And then back in here I had a listen to the dictaphone to find out where I’d been during the night. I was at home last night. I can’t remember what I was doing but all my brothers and sisters were slowly coming home from school. We were having the usual kinds of arguments. There was a dog there too, an old dog, probably one of the collies that we used to have as kids. She was there being quite quiet. When people came to the door they’d knock and wait until someone opened it which was very difficult for me being on crutches. Every time it happened I’d go and open the door and let in another sibling until one occasion when there was a knock on the door, I went to open it and it was my mother. She was there with 2 great big dogs. They came into the kitchen and began to jump up and down at me. I don’t like dogs at the best of times but when I’m on crutches and not very steady I don’t like them jumping up at me at all. This was something that I just couldn’t accept. I became rather angry. There was some mention at some point of one of the daughters of my niece who was there. She turned up in a Volkswagen saloon. Another one of my cousins on my father’s side asked “do you have one of these now?” in some kind of derogatory tone. She replied “yes. It’s a lovely car, especially when it has some power in it”. Apparently it also doubled as an autonomous standard lamp of table lamp that could be used to throw some light on whatever it was that you were working.

And then we were in the middle of Covid, the height of it and we were going to school in California somewhere. There were no school buses running so we had to walk. It was a long walk away. We set out to walk on this long grass verge, a couple of us, and slowly began to climb this embankment which led to a road that passed over the motorway When we reached the top and looked down, it was one of these 16-lane motorways. Of all the traffic going in one direction there wasn’t a single vehicle at all. Going in the other direction were all the cars in the world, all parked nose to tail and looked as if they hadn’t moved for weeks. We couldn’t understand the folly of these people who even in the middle of a pandemic had felt it necessary to go out in their car and just sit in a traffic queue as if things were back to normal. We carried on walking and came to the school. There weren’t very many people around but there were plenty of police officers there interrogating everyone about why they’d come. To us it seemed quite obvious that we’d come in order to attend our lessons

Later on I’d gone to night school. My partner, whoever she might have been, had gone too for her lesson. In our Welsh class there were only 3 of us there and no tutor so we just chatted amongst ourselves quite vaguely for a while, talking about the history of the group, how we were learning and how I was miles off the pace. I did my best to recount a long rambling conversation about how I once went from Brussels to Austria for a pizza and came back again the same night in the Opel. Afterwards when we came out I met my partner again. I asked her if she’d done anything exciting. She replied that she’d found a body. I asked her to repeat it. It turned out that they’d had to go into a dark recess of one of the storerooms in the school to look for some ink for something. While they were rummaging around in the back corner they came across the mummified remains of a new-born baby. It was probably there 40 years. You could see from the deformed skeleton that it had had a fall. There was very little hair on it which implied that it was new-born. She was wondering about it. To me it seemed quite obvious that some girl at the school had had a child without telling anyone and concealed the birth. It wouldn’t be the first time that that had happened. Later on, for some reason when the police came round to our house to take a statement they took me with them to go back to a clothes shop near the school which they said had something to do with the crime. I went with the policeman. He had a Volvo 740 estate, one of the flat square ones. He lifted up the bonnet to look for something . I had a look underneath it and saw how simple the layout was and how much room there was. I began to regret that I hadn’t had a couple of those on the taxis.

Finally I was with a boy from my class at school last night. He wasn’t anyone special and so i’ve no idea whey he would suddenly put in an appearance. Several weeks earlier I’d been to church with Marianne, a new modern church in the south part of the city centre of Brussels. It was a place that she’s wanted to visit before she died so I’d taken her there. Later, I decided for some reason to go again. That was when I met him. We walked down a road past a big brick-built church dating from probably the late Victorian period. There were a lot of roadworks outside. I explained to him that there was a statue of Jesus inside who was preaching to the congregation over a lake. The lake was actually a river of which the exit had been blocked. It looked to me as if they were freeing the exits so that the water could flow through the church and out the other side because of so many stories of Jesus preaching by running water. he wondered if that was the church to which we should be going but I explained that it wasn’t. We carried on walking. By now I had a young girl with me instead. She was asking questions about the church so I explained things to her. We eventually arrived just as the service was about to begin. I had STRAWBERRY MOOSE with me whom I was holding. The girl as soon as she saw from the top of the bank of seats the service starting she dashed to grab a seat with a spare one next to it so that I could sit down. There were some people whom we knew who were there who had 2 small girls. Of course the 2 girls were chatting to Strawberry Moose. Most of the women and girls were in bathing costumes It was something to do with blessing the swimming or something like that. I didn’t quite understand it at the time so many of the girls and women were in swimming costumes.

When Marianne was dying I did my best to take her to places that she wanted to visit but it wasn’t easy because her illness advanced so quickly. I sat by her side for 5 months and watched her die, and it was the most horrible thing that I could ever imagine. She was quite religious and her response to anything was “my Saviour will call me when he’s ready”. I’m not going to put anyone at all through that kind of torture, and the medical staff where I’m being treated know what to and when to do it.

It reminds me of a story about Sidney Smith, a Home Office pathologist who was giving a talk on this subject.
"If ever I begin to lose my faculties, my coherence and my dignity" he said "I’ve told my wife that she must “have an accident” while cleaning the shotgun"
"Blimey!" shouted a voice from the back of the hall. "She’s leaving it rather late, isn’t she?"

After my morning coffee and fruit bun I began the process of tidying up. There’s not much that I can do and it takes me forever to do it but I have to show willing.

It’s not as if I mind people seeing for themselves that I’m struggling to manage, especially someone whose job it it, but even I have my pride and my limits. However, as was said in Proverbs Chapter 16 Verse 18, "Pride goeth before destruction and a haughty spirit before a fall"

When the ergotherapist came round we ran through my routine about cooking, eating, working and all of that kind of thing and she didn’t have too many suggestions in that respect. It was the bathroom that drew most of her attention and we spent a lot of time in there working out a few things.

She did ask me if I wanted a raised seat in the WC and that is probably the most humiliating incident yet with this illness.

One thing that she wanted to do was to watch me make a pot of coffee, but I suspect that that didn’t have very much to do ergotherapy. She declined my biscuits though.

After she left I came in here I had a phone all to make to one of my neighbours, and then I crashed out definitively for quite some time. So much so that when I finally did awaken I felt absolutely dreadful. But once I’d finally come back round into the Land of the Living, I paired off the music for the next radio programme.

Tea tonight was a stuffed pepper with pasta and veg, just as nice as usual, and there’s plenty of stuffing left over for the next couple of days

Tomorrow I have the doctor coming around, the Welsh lesson (the last of the year) and then the Centre de Re-education in the afternoon. And right now, I have never ever felt less like it. I hope that I have a good sleep tonight.

It’s one of those things for which I have sore misgivings, and even worse, I have no ointment to rub on them.

Friday 1st December 2023 – THE BAD NEWS …

… is that my carcinogenic protein has now been found in my nervous system

The good news is that the doctor whom I saw in Paris at lunchtime is keen to have a go at tackling it. And who am I to object to that? What do I have to lose? My marbles – I lost them a long time ago. In fact, I doubt if I ever found them.

But it’s nice to have some good news. It’s been a long time since I’ve had any, and that’s not a cue to talk about those three days that are missing from my blog at the end of August 2019 aboard THE GOOD SHIP VE … errr … OCEAN ENDEAVOUR either.

But while we’re on the subject of good news … "well, one of us is" – ed … I had a really good session on the acoustic guitar working my way through part of my playlist. I reckoned that if I was going to spend 4 hours sitting in a car going to Paris, that would be as good a time as any to catch up on my beauty sleep so I may as well make the most of my own personal time.

The trouble is that most of my playlist is nostalgia-based and I have a lot of stories to tell about the songs on it. For example, in REAL LIFE my heroine comes from the Outaouais with black curly hair and, quite probably, regular readers of this rubbish will recall the name by which she might be known.

Then there’s MARY JANE’S LAST DANCE. "I’m tired of screwing up, tired of going down, tired of myself, tired of this town". I remember singing this to myself driving down from Crewe to Dover Docks through the night with all of my life that remained packed into the back of an old Cortina Estate

And I could go on … "not with a pickaxe through your neck, you couldn’t" – ed …

So abandoning yet another good rant for a while, I hauled myself off to bed.

As usual, being a very light sleeper and having to make sure that I’m out of bed promptly, I had an enormous amount of trouble going to sleep.

But in between the spells of wakefulness I must have gone off to sleep because the alarm awoke me.

First things first – I had a good wash and put on some clean clothes. If I’m going to be poked and prodded about I might as well make an effort.

Second thing was to check the papers in my backpack to make sure that I had them all. My sandwiches were in there too – I’d made them up the night before. It’s always a good plan to have a few bits of bread in the freezer.

Finally, there were the dictaphone notes. Something had gone wrong and we’d had a calamity. As a result everyone in our house had to go out on some kind of visit to someone important at some ridiculous hour of night in the middle of winter. There was a big storm raging. This meeting went on apparently much longer that it was supposed to and it was gone midnight when we all finally struggled back. I was in front having to feel my way along the wall and along the clothes line etc in order to arrive at the building. I eventually ended up in the outhouse to the house. I eventually managed to put the key into the door and open it. I threw on the light switch but there was very little power in the batteries so there was barely a glimmer of light illuminating anything. I could see that this was just going from bad to worse to worse.

Later I was at the University of Duluth in Minnesota last night watching a strange kind of game, something of a cross between basketball and ice hockey. Each team consists of both males and females. The aim was as in basketball or ice hockey to work the ball down towards the goal area where you could lob the ball over the crossbar. If it hit the ground you’d have a free shot at scoring a point, similar to basketball. The net was a kind-of thick arrangement where it was quite easy for the ball to be lost inside. Then it would vibrate and shake around, then dart out in all kinds of strange directions and everyone would run after it. I was watching from behind one of the goals because I knew someone from Duluth who was taking part. Duluth was leading up until the final minute when the opposition managed to get the ball over the bar and bounce on the ground behind which meant that they could have a free shot. However their free shot was held up in the net and the whistle blew before it was ejected. I went to have a chat to my friend afterwards but he couldn’t stay around because he’d only turned up to play the game. He was busy with his harvest back on his own farm.

Strangely enough, I’ve never been to Duluth. I did actually have a passage booked on a freighter going from Ijmuijen to Chicago and Duluth once but at the outbreak of Covid all ad-hoc passengers were excluded from freight sailings and as far as I’m aware they haven’t restarted.

Finally I went into work on Monday but half the cars wouldn’t start and there was a big meeting taking place. The boss asked me to go to the Centre des Urgences to explain and arrange for some assistance. All of a sudden I had a mental blank and couldn’t remember where it was. For about 10 minutes I was wandering aimlessly about the building even ending up down in the basement again in the stores with Henri. Eventually someone explained to me where it was and I found it but it seemed to be for people who were having to travel at last-minute rather than anything else Nevertheless I went over and began to explain the problem but a girl sitting behind one of the desks shouted at me “can’t you see that I’m busy? Can’t you see that I have plenty of other things to do?”. I stormed right over to her and gave her a complete and utter mouthful of exactly what I thought of her interruption and then went over to find someone else with whom I could speak at another desk.

The car came for me bang on time and as I was struggling downstairs the visiting nurse was running up on his way to attend to my neighbour.
"Do you want a Covid injection?" he asked. "I have one left over"
Do bears have picnics in the woods?

So there I was, a taxi driver at the bottom of the stairs, the nurse and I halfway up, me with no clothes on my upper body receiving an injection. It must have made a wonderful sight, but I wasn’t going to turn down the opportunity.

The drive to Paris was uneventful apart from the traffic around the Péripherique of course. And finding the correct building in the hospital complex (because it really is a maze) was quite straightforward.

Finding the entrance however was another thing, and once we found it, finding the reception was even more complicated.

And then I had the doctor, and we had quite an interesting discussion.
"Do you know why the hospital at Montlucon took out your spleen?" he asked.
"To be honest" I replied "I don’t think that even they knew why they did it"

And then I recounted my tale of woe about the events that took place between November 2015 and March 2016 with which regular readers of this rubbish will recall being regaled at the time.

But retournons à nos moutons as they say around here, and he told me that the last lumbar puncture revealed traces of the carcinogenic protein in the liquid that flows around my nervous system

So that, dear reader, is that.

But I’ve had to fight all my life and even if I were ready to stop, I wouldn’t know how to.

Over 30 years ago I met the old blues singer TS McPhee in a snooker club in Crewe and we had a good chat. He wrote A SONG ABOUT DYING "I’m like a ship on the ocean that’s rolling from side to side".

He goes on to say "I’ve done everything that I ever set out to do". Well, he might, but I’m a long way short of that and so I’m going to keep on keeping on, as BOB DYLAN WOULD SAY

He’s keen to get in there and fight too, which is good news. It’s always nice to have allies and I don’t have many of them.

His plan is to call me in after the New Year and have me stay for a few days. He plans another one of these really agonising lumbar punctures to check the results, and then he’s going to spend some time examining my heart.

What he reckons is that following the disastrous sessions of chemotherapy that I had and which were rapidly abandoned, there might be some kind of tablet that might stimulate the nerve cells to fight back in the same way that Aranesp stimulates the red blood cells.

However it’s not for the faint-hearted – and he means that in the literal sense. He needs to know if my heart will withstand the strain. If not, he’ll have to think of a Plan B.

He told me about the side effect too, one of which is “bad attacks of cramp” however I don’t really know whether I have any vacant spaces in which to fit any more attacks of cramp.

At one time I started recording the attacks of cramp that I was having but for quite a while now, the only recording of attacks of cramp that takes place is when I go for a day without any, and I bet that you’ve not noticed too many instances of that.

After he threw me out I thought that I’d find a quiet place to eat my butties undisturbed and then phone the driver to say that I was ready but I’d hardly taken the first bite out of my bread before I was caught in flagrante delicto

Apart from the traffic leaving Paris and on the péripherique de Caen we had a straightforward drive home and I drifted away with the fairies now and again.

We were back here at 17:50 and the first thing that I did was to have an energy drink and then make a massive mug of hot chocolate. I’d had nothing whatever to drink all day.

After a rest I had another helping of sausage beans and chips. Something quick and easy.

But after my exertions today I’m off to bed. I’m not going shopping tomorrow. I really can’t haul myself off outside after today.

Instead I’ll send off my supermarket order and add onto it the things that I’d usually buy at the Carrefour.

Discretion is the better part of valour after the events of today.

Friday 17th November 2023 – AND I WAS DOING …

… so well too!

While I was out at the shops I really noticed some kind of improvement in my mobility. Not a lot, it has to be said, but definitely something.

And then, back here, I couldn’t climb up the stairs to my apartment. I really couldn’t. To make my way up 13 steps it took 20 minutes and a pile of gymnastics and I’m really not cut out to do this any more.

There had been plenty of gymnastics during the night. I didn’t go to bed until late because once I’d finished off everything I had a bad fit of nostalgia and fetched the acoustic guitar.

The last time that I had played CAREY seriously was on a windswept airstrip in the High Arctic when Castor and I were chilling out before her ‘plane came in to take her away – away for good after one of the most bizarre periods of my life and I was never the same again.

And, believe me – there have been more than just a few of those.

Of course after that there can only be ONE SONG THAT CAN FOLLOW THAT and it’s really strange that it wasn’t until a couple of years later when I was standing on an airport somewhere else that I realised that sometimes, goodbyes have to be said like that.

The painter Samuel Gurney Cresswell who had the unfortunate experience of accompanying Robert McClure during his expedition in the Investigator said afterwards when being interrogated by the Admiralty that "A voyage to the High Arctic ought to make anyone a wiser and better man".

That doesn’t seem to have worked for me, but then again we were only beset in the ice for 48 hours, not 18 months.

So having had a bad attack of nostalgia I went to bed with my legs strapped together in my elastic hoping that maybe Castor would come to pay me a visit during the night, but no such luck there. I’ve definitely lost the knack of summoning up people

When the alarm went off this morning I was in South Wales with a group of people who may well have been some kind of Welsh learners’ group. The discussion centred around sport – mainly rugby but also football – and one woman was talking about a “rugby trail” around South Wales, a tourist attraction to visit all of the famous sites in Welsh rugby that passed by her home in Merthyr Tydfil. Some of us were talking about football and the subject of a famous footballer who had had a difficult time in his youth with a couple of clubs came up. We had at one point to go out into a field, mark out a path and lay down some supplies but when we arrived we found that the field hadn’t been mown for years and was really just like wild hay. When we reached the spot where we had to leave these items it was impossible to see anything but the guy with me asked “should we just leave the things here now and come back for them again?”.

Nevertheless I struggled to my feet and went off in search of medication.

Having done that I came back here and transcribed the rest of the notes, of which there were more than just a few. For some reason I’d been on a voyage around an apartment during the night. The apartment was equipped with every kind of device known to man, to help someone handicapped raise themselves to their feet and move around. There was of course nothing that I saw that was of any use to me in my predicament but it was interesting to see what my subconscious in a dream thinks would happen to people in circumstances like this.

Some boy whom I’d known at school had phoned me and asked me to stop doing Hamas’s job. I asked him what on earth he was talking about. It turned out that we were all a big group of people from school working together for some organisation and someone had been phoning him with all kinds of strange phone calls while he was in the bath. He thought that it was me but I tried to reassure him that I hadn’t done anything at all like that. In the end the conversation gradually drifted round into something more light-hearted and friendly. He went through the whole list of phone calls on his phone for that afternoon and asked me if I knew any of the locations and if I’d ever been to any of them during the day. Of course I had to deny everything. But there was something in this dream that when I saw him leaving work that afternoon he had with him a double-necked 6-string guitar and amplifier so I wondered what on earth was going on with that but it had nothing whatever to do with these phone calls, I was sure of that and I knew nothing whatever about any of them.

There was another dream similar to the first one where someone complained that I’d been ringing them at all strange hours of the day and night. When we looked at the phone records I was nowhere near wherever these phone calls had originated. I’d never lived there and certainly hadn’t visited that area during that time so I’d no idea what he was talking about and why the guy thought that it might have been me.

At another moment it was as if a length of coiled spring had been inserted into the pavement every so often and you came along and stuck your crutch-end into the hole in one of these statue things and it tipped you off down the road to the next one. I thought that this was the strangest thing I’d ever heard but once again I had to go to great lengths to deny having made any of these phone calls that were so disturbing this guy so much.

Shavington, outside the Post Office on the corner, was another place where another one of these statues had appeared. Once again people were thinking that it was me but I had no idea why they thought so. I certainly hadn’t done anything about erecting any statues and I was sure that if they’d checked the phone number and the e-mail it would be totally different from any that I could access. I really didn’t have any idea as to who was doing all this, why they would want to do it and why they would want to use me as a victim.

I was back last night in that dream about Roosevelt, the baseball player. I’m not sure if I dictated it but there was a group of RAF pilots in South Wales during World War II right at the start. They’d heard that a Luftwaffe fighter had fetched up in Ireland and had been put on display by the Irish authorities. They took off on a scheduled flight with about 10 other people to fly to the airfield. The part across water went well but the part across land was complicated and ended up running out of time. It was a struggle to get down to the airfield at the correct moment. For some unknown reason I was flying behind on my own. They touched down and went into this hangar. There were some statues of American heroes who had come from Ireland. One was a guy called Roosevelt. Everyone immediately thought that it was the President but I explained that there had also been an American pilot in World War I called Roosevelt who came from Ireland and was a famous baseball player. I bet that the statue was of him. That led to all kinds of discussion and argument sand no-one would believe me. But there had been so much time spent messing around and trying to organise things that when it came to the flight back not only had they not actually seen the aeroplane but they were still nothing like ready to depart. You could see that everyone from the passengers down to the crew down to the airport staff were extremely annoyed about these RAf pilots who want to go to look at this aeroplane but just couldn’t organise themselves to do so. What didn’t help was that one of them knew a girl who happened to be there at the airport and spent far more time talking to her than he did to the rest of his colleagues.

Actually, the pilot referred to was an American of Dutch descent, Quentin Roosevelt, who was shot down and killed on the Marne in 1918 and regular readers of this rubbish will recall that on our shuttle between Brussels and Virlet that we used to undertake regularly, we always drove past the memorial at Navarin Farm near Chalons sur Marne.

He had an airport on Long Island named after him and we went there to see the site of it over the New Year of 1999-2000 and where I was lucky enough to be allowed to sit behind the controls of the replica of Lindbergh’s “Spirit of St Louis”

Later on I was whisked off in this programme of investigating people’s immigration status, I suppose. There was a pink aeroplane that came along on which I was put. When we landed somewhere we were all ushered into a certain area where we had to produce our nationalities etc. I was extremely confused as to what was happening and couldn’t understand a thing. Of course quite naturally I’m of British birth and origin and have been all my life

After a good wash and setting to washing machine off on its travels I went out and caught the bus.

And on arriving at St Nicolas a most extraordinary thing happened.

Someone came over to me. "I see you at the Centre de Re-education" he said, and began to chat with me about our illnesses.

When I told him that I have a terminal illness he reached into his pocket, pulled out a phial of Holy Water, dipped his finger in it and made the Sign of the Cross on my cheek.

Marianne had gallons of Holy Water that she had collected from just about every Holy place in the World and she even blagged herself an Audience with the Pope when we were down in Rome for Holy Week 20-odd years ago, but it didn’t do her any good and I don’t suspect that this will do me any good either.

But sometimes, I’m quite amazed at the generosity, thoughtfulness and kindness of ordinary people whom I encounter on my travels around.

That Holy Week though was quite interesting. Apparently if we visited 7 particular religious sites scattered around the Seven Hills, we would be assured of permanent Absolution. Of course, that means nothing to me whatsoever but she was really keen to go so we went.

It was in the middle of winter too and the sites were really scattered about – one of them several miles outside the city on the Via Appia Antica but I insisted that if we were going to do it, we were going to do it properly so just like the Pilgrims of years ago, we walked all the way, past the catacombs and the tombs and everything else.

Mind you, there were many more cafés along the road than there were in former times.

So now, just to let you know, I am assured of permanent Absolution – not that it will do me any good.

At the Carrefour they had some bread that was going out of date, on sale for a pittance. As it happened, I’d seen a couple of days ago a recipe for bread-and-butter pudding made in the air fryer and seeing as I now have some dried figs to go with my raisins, sultanas and desiccated coconut, I reckoned that I’ll give it a try.

Loaded up with stuff and having had my coffee I made my way back to the bus stop and home, and my nightmare climb back up to safety.

First thing that I did was to hang up the washing, and you’ve no idea how difficult that is these days. Then I put away the stuff that I’d bought and made myself some soup to go with the crusty bread that I’d also bought.

Back here afterwards I was absolutely fit for nothing and spent much of the afternoon asleep. It’s really taking it out of me, all of this work and I know that I’m going to regret it before much longer.

In between everything I was having a chat with Alison. I asked her how the renovations were going on at Alison Wonderland so she sent me a few photos to show the latest developments.

Apparently the new kitchen will be there in a couple of weeks and she’ll be moving in in January

Whatever lese was left of the day I finished the radio programme that I started earlier and then paired off the music for the next radio programme and writing the notes. I’ve done over half of them and I’ll finish the rest tomorrow so that I can record them during the night on Saturday when it’s quiet outside.

Tea was salad, chips and some of those veggie nuggets, and that is that for today.

Now that I’ve finished my notes I’ll make myself a drink and then go to bed. I’ll try to avoid playing the guitar just before bedtime though. Nostalgia ain’t what it used to be.

Tuesday 10th October 2023 – I WISH THAT I …

… hadn’t bitten the bullet and sent off that mega-food order this afternoon.

No sooner had I pressed “send”, received the acknowledgement and watched the money go out of my account when along came an e-mail

“Dear Mr Hall. You are requested to come to the hospital for 11:00 on Monday 23rd October. Please set aside one week”.

And so that, dear reader, is that.

As it happens, it was nice to have some good news for a change. After all, I had quite a dreadful night.

It was rather later than I would have liked to have gone to bed but an ache in my foot made it difficult to sleep. The pain slowly spread up the leg until by about 02:00 my entire lower right leg felt as if it was on fire.

Consequently I spent most of the rest of the night rubbing mint-tinted cold cream into my leg in the hope that the sensation would die down.

At some point I must have gone to sleep because there was something on the dictaphone from the night. I was with my friend from the Wirral and someone else last night. I don’t know what we were doing at the start but we’d ended up at Middlewich and gone to see my father’s factory. We went in through the back door of course and worked our way round through the garage. My father was working at a vice. I asked him if he’d seen (someone). He replied “yes, he’s upstairs” so we went up the stairs onto the gallery while whoever it was was doing what he had come here to do. My father came up a few minutes later. He had a razor and a few other things. It looked as if he was going to shave someone. Then I realised that someone was going into hospital for an operation that afternoon so I imagined that the shaving is due to that so he was there with the razor. He turned to me and asked “are you ready?. I asked “ready for what?”. He replied “you’re donating the tubes, aren’t you?”. I answered “I don’t want to talk about it, I don’t want to discuss it, I don’t want to be involved or anything. If you want to take something out of my body just hit me with a piece of wood and do it while I’m unconscious, and don’t say anything. I don’t want to know about the procedure or anything else that happens”.

Not very much but I was surprised that there was anything at all on there.

When the alarm went off I went and had my medication and then checked my mails and messages. Having then transcribed the dictaphone notes I sat down to revise my welsh but regrettably fell asleep at the computer.

Armed with my coffee and fruit bun, I joined the lesson and to my surprise it seemed to pass quite well. However, my brain is still all churned up with rubbish and nothing seems to stick.

After the lesson I went through the shopping list to update it and have several goes at sending it. Some of the stuff that I wanted wasn’t in stock, and then the order fell below the minimum £50:00 limit so I had to track down some more supplies that I might need.

My weekly shopping bill for food usually runs out at about €35:00 and I was buying for a fortnight, so I was bewildered as to why I couldn’t reach €50:00 with ease.

What I should have done, I suppose, is to have asked one or two of the other housebound people in the building if they needed anything that I could have ordered for them.

And then I had the e-mail from the hospital. They want me to have a blood test before I go, so I had to ring the nurse to arrange for him to come round on the Saturday before I go to do the necessary.

But even though I’m looking forward to the stay in the hospital and the likelihood of having some kind of treatment that might possibly help me, I’m not looking forward to the journey. In fact, I have the feeling that the strain of the travelling is wiping out all of the benefits of whatever treatment I might be having, and more besides.

Next task was to ring up the people who handle the Autonomy issues. I spoke to them almost a fortnight ago and they promised to send me a form, but it’s never been received. I rang them back to hustle them along and they agreed to send me another one.

Let’s hope that this one arrives.

Rosemary rang me too and we had a really good chat about all kinds of things, but it wasn’t one of our usual marathon chats because the doorbell rang – the delivery guy with my food. Some of it was frozen and there was a lot of chilled food so it all needed to be put away as quickly as possible.

So right now, not only is there not even one cubic millimetre of space in the freezer, there’s not even one cubic millimetre of space in the fridge either. At least I won’t be going hungry for several weeks, even if I don’t go out again.

While I was doing all kinds of stuff with the food, Rosemary had texted me back. She has one of these small Land Rovers so I’d asked her to raise the seat to its highest position and then measure the height of the seat from the ground. The answer was “60 centimetres”.

My chair here is 50 centimetres off the ground and it’s something of a struggle to rise to my feet. If I’m to buy a different car, it needs to have a seat more than 50 cms off the ground to make it easier for me to stand up so I need to have a few measurements lined up.

What’s annoying is that Strider’s seat is exactly the right height for this kind of thing. It was so easy to get in and out of him. I suppose that in theory I could have him shipped over here but he’s as old as Caliburn and salt on the roads in Maritime Canada haven’t been kind to him.

As well as that, his engine is an old-generation V6 “Cologne” engine of 4.0 litre and drinks petrol like there’s no tomorrow.

With what time remained (and there was some, after all of that) I edited the notes for another radio programme and that’s now ready to be assembled and completed, but not tonight. I’m exhausted.

As I had my wraps delivered I could have a taco roll for tea, with some of the leftover stuffing. There’s a little left so I’ll make a curry tomorrow. But now that I have some soya yoghurt I can make some naan bread to have with it. I’m not quite sure where I’ll put the leftover dough rolls but I’ll worry about that tomorrow, I suppose.

So now I’m off to bed now that I’ve finished my notes. I’m hoping for a much better night tonight and tomorrow I’ll have to put away the rest of the food. There isn’t any room right now to put anything.

But give me a week or so and there might be some space somewhere – and then I’ll be off to the hospital. I hope that they will be able to do something that might improve my situation and I can go back to have something like a better quality of life.

Mind you, I do have to admit, I can’t complain too much. At least I seem to be doing OK for food right now.

Friday 6th October 2023 – IT’S NOW OFFICIAL.

In the post this morning came my two disability permits. One for me and one for any car in which I might be travelling. It’s a sign of the times of course and something that will inevitably happen to all of you at some time or another. All I can say is that I’ve had a good run for my money

All I need now is a car which I can drive, but that’s not going to happen any time soon. For that, I’ll have to see what these people at APA have to tell me, but even now they STILL haven’t sent me the forms that they promised a week ago. This is going to be a lengthy process.

My sleep last night was a lengthy process too. For two nights on the run now I’ve slept right through until the alarm went off. And then I had a struggle to get to my feet before the second alarm went off.

There was time to listen to the messages on the dictaphone before I did anything else. There was some kind of uprising taking place. All the citizens were required to rally to the defence of their city. Someone was suspected of being behind all of this so hat they called for was to examine the metadata of a couple of files on his computer to see whether they had been altered in any way that might give grounds for some kind of suspicion. When they asked for this information he did everything he could to defy them, delay them etc until in the end they were all swamped by all the mails that were coming from the citizens so it was going to be so it was going to be something much more complicated than it might have been had they done it a day earlier.

And then I was working for a company last night and had to go round to collect a debt from someone that was owed. I went round to their house, and it took some finding. When I arrived I knocked on the door but it swung open so I walked in and shouted. Eventually an old woman came into the kitchen and asked why I was there. I explained that she had a bill to pay. She apologised and said that she’d pay it so I went back to my office. There was some kind of building project taking place that needed to be done quietly so we decided that we’d do it in the dark. At night we dressed in clothes, it was a wet and windy November night. When everything was quiet and everyone had gone we set out. It was then that I realised that I didn’t have my gloves. I was told that I had to have them. They were on the floor by the washing machine in the laundry room So I’d have to run back to fetch them while everyone waited for me. That was quite a long way but I thought that it would really be uncomfortable working in this without gloves so I’d best set off.

We were back in Davenport Avenue later. It wasn’t exactly like it but a mirror image. Nerina and I were tidying up a few things because we were having visitors. It turned out that my friend Malou and her friend were coming to visit and we were going to hang around together and then go off out. Nerina was busy planning in her mind who she’d allocate with who and decided that I’d take Malou in my car. I didn’t want to explain to Nerina that there was no tax or MoT on my car but in fact it was probably a wise idea to go in Malou’s car but she was quite insistent so when it reached the time to go outside one of our party (I can’t remember who) was at the front of the house and saw Malou pull into the drive with her friend. We walked down from the bottom of the drive up to the street to meet them. I remember thinking “my house is so untidy, such a tip, that i’m not sure that this is a good idea to go inviting people to my house” … "nothing new there" – ed …

Finally I was with Alison and another girl walking around Brussels. We ended up around a section that was really modern. There were all these huge aeroplanes flying overhead and it really looked like something out of another world. It was dark and misty and these aeroplanes were so impressive flying through the low clouds at night like this with all their lights on. Then we decided to carry on walking but there was a really good view there so I stopped to take a couple of photos. Then I wandered off to take some photos of my bedroom window which was only a couple of hundred yards away. I dashed off and took the photos. I could hear some people talking outside as if their conversations weren’t being overheard. That was really interesting. In the end I set off back out again. I hadn’t gone far when I realised that I’d forgotten my camera. I carried on anyway. There was a woman on crutches with a couple of kids, and lots of other people. I couldn’t see Alison. I thought to myself that maybe we should have made better arrangements to meet than this. Suddenly she was at my elbow and told me that she’d put on the shelf all the information concerning our trip. I told her that I’d been keeping a log for the whole month and that was all together too. We sat down to work out where we want to go

Then I headed out for the bus as I had things to do in the town. I’d taken with me the letter that I’d written yesterday to the doctor, with the intention of giving it to the receptionist. But as you might expect, the way things are these days, there was a strike on and the receptionist wasn’t it.

Round at the Carrefour I did the shopping and made it back in time for the bus. It was a struggle to climb aboard, as I imagined that it would be.

However, there was some good news. I’d interrogated the driver and he told me that the bus stop at St Nicholas does indeed have an elevated platform so boarding the bus for coming home shouldn’t be too much of a problem.

The big difficulty though is that there is only 12 minutes between the bus dropping me off and it coming back again, and that is going to cause a few problems of its own.

Mind you, after how I felt after my trip out today, I don’t think that I’ll be going anywhere again. I can’t keep this up. it’s really hard to believe that it wasn’t all that many weeks ago that I walked back from town after a shopping trip.

Back here, having staggered up the stairs under my heavy load, I made my coffee and my cheese on toast, and then came back back in here where, in a marvellous fit of bravado, I finished off the arrears of the dictaphone notes from when I was in hospital last autumn.

My cleaner came round to see me afterwards. I’d sent her a message about my failure to leave the letter at the doctor’s. I’d asked her if she would take it for me on one of her forays down to town next week. I realy and honestly don’t think that I could do it, and it’s quite an important letter.

Something else that I did this afternoon was to bake a loaf of bread. With not going out tomorrow I won’t be having one of my lovely crusty baguettes so I need to do something about that if I want my cheese on toast.

In fact, going back to baking isn’t a bad idea really. At some point in the proceedings I have to make more fruit buns and more pizza dough so it seems like a good moment to have another go at making a vegan pie. I picked up some potatoes today so I have enough to keep me going for a while.

Finally, I chose all of the music for another radio programme and paired it off. If I can write the notes for that tomorrow I’ll have four sets of notes to dictate and that will give me something to do over the next week

Tea tonight was a burger on a bun with salad and a baked potato. Nothing special at all but quite nice for a change.

So now I’m off to bed. I’ve had a really busy day as you can see, and I’ve crashed out once this afternoon already, but only for a few minutes. Now I want to crash out for a good while and sleep until the morning.

Then I’ll see what can be done about all the things that need resolving. There are plenty of those.

Tuesday 19th September 2023 – A DECISION HAS …

…been made about my state of health. And considering that I only sent in the documentation on 24th July and was told that there’s a 4-month waiting list, that was extremely rapid, to say the least.

But to cut a long story short … “thank heavens” – ed … it has been decided that I have a Class II disability, which means that I am classed as between 50% and 80% disabled, with issues that impact my daily and social life.

As a result, I’m classed as a priority case, and shall (when they have been printed) receive a card to that effect and a disabled person’s parking permit.

Not that the parking permit will do me much good because if my mobility deteriorates any more, I shan’t be driving any more – and I won’t even be going out at all.

So all of this will give me something to think about when I’m in bed tonight.

There wasn’t much time to spend thinking last night because I was extremely late going to bed. I just couldn’t summon up the energy to retire.

As well as that, I was actually awake before the alarm went off and when it finally did start to ring I was sitting on the edge of the bed with some of my clothes already on.

After the medication I checked my mails and messages, dealt with a few bits of correspondence and then revised for my Welsh lesson. That passed off quite well today, much to my surprise.

When the lesson finished I had some fruit and then buckled down to work. I’ve booked my train for Paris on Monday, booked some assistance at the Gare Montparnasse (which I can now do, seeing as I have a certificate of entitlement while I await my card) and then booked a taxi to take me to the station –

As it happens, I’m not looking forward to the trip to Paris. My train is at 05:55 so the taxi is coming for me at 05:15 which means that I need to be up and about at … errr … 04:30. That is just crazy but it can’t be helped. I have to be at the hospital at 11:00 and unless I want to stay the night, there is just no other solution.

There was some stuff on the dictaphone too, despite the short night that I’d had. 2 small boys went to the hospital in Athens – their parents had sent them there because maybe they were British and it was the English School there. Something had happened to one of the parents of one of these children and the children had to come back by bus which was a bit of an alarming trip for someone who had never done it before, especially in those kinds of circumstances.

There was something else about someone being involved in a kind-of internet game. There was a trap set in it that harvested everyone’s details off their computer, where they were etc, but I can’t remember very much about this at all

While I was at it, I transcribed a couple of days’ worth of notes from when I was at Alison’s. There’s still plenty to go at there but I’ll keep on plugging away at it ready for the next lot.

Tea tonight was a taco roll – quite delicious too with the stuffing. And I found something interesting today – which I should have known because I’ve used this technique before.

While the stuffing was still warm I put it in the glass storage container and put it straight into the fridge. And so the container sealed up with a perfect vacuum which was quite impressive.

With a few minutes that was left later on I went through and sorted out some more music, labelling stuff and disposing of duplicates. I’m slowly fighting my way through it all and one day I might actually be finished some day.

But now I’m off to bed. I’m going to be working on the radio stuff tomorrow and prepare a couple of programmes ready for the future. High time I got myself into gear and actually accomplished something. No-one else will do it if I won’t.

Sunday 20th November 2022 – I’VE HAD ANOTHER …

… relapse today.

This morning I awoke with a pain in my chest and it’s gradually gone from bad to worse during the course of the day.

When I explained the problem to the nurses when they were doing their rounds, my little student nurse came back with an ECG machine and took a scan of my chest.

However as the day wore on the pain became worse and worse the doctor who came to see me in the evening gave me a good going-over and sent me for an x-ray. As yet I don’t have the results.

Another thing is that I’m also off my food. I ate my soya dessert and drank my coffee this evening but that was that.

Despite going to bed early last night I was wide-awake at 03:06 and even thought I went for the usual stroll down the corridor, I couldn’t go back to sleep again and I lay awake tossing and turning for quite a while.

Eventually I must have gone back to sleep because the alarm awoke me and there was also something on the dictaphone. There I was wide awake at 03:08 this morning and had a meal to cook. I went through a recipe book and found 6 courses of something that would make a really nice Indian meal and began to collect all the ingredients together. There were things like white fish cooked in rice etc. As I looked I thought that some of these things were at first way beyond my capabilities. I needed a large amount of courage in order to start them. It took me ages to try my best to summon up the willpower and I still hadn’t. In the meantime it was back in the 1930s and they were talking outside my door about the rise of Germany, talking about Fascism etc. I hated the idea that they would come in and ask what my political leanings were because if I said that I were left of centre I’d be accused of being a Communist etc which was totally and utterly untrue. Meanwhile, how was I going to start this meal? I wanted a big pyrex dish that I knew existed in this kitchen, where I could put the rice and fish but I couldn’t find it or anything that resembled that dish. I thought “here’s another load of chaos I seem to have descended into”.

The nurses came round on a few occasions to bring me my medication and take my blood pressure etc. At one point my little student nurse took my blood pressure and found that it was 98 over 67.

“That’s really low” she said. “Normally when I take your blood pressure it’s much higher than this.”

“Not ‘arf” I thought to myself. I might be old and bits of me might not be working but none of that affects my blood pressure, especially when a pretty young girl leans all over me to wire me up to all kinds of machines. It’s usually like the “blood pressure” scene from CARRY ON DOCTOR.

For most of the rest of the day I’ve been curled up under the bedclothes. With no-one coming by, no tests or examinations, there hasn’t been anything else going on so I may as well take it extremely easy.

There’s a lot going on tomorrow and I need to be ready for it. That is, if my chest doesn’t get any worse.

Sunday 13th November 2022 – AS I EXPECTED …

… not an awful lot happened today.

One of the housemen came round this morning to see me and asked me how I was feeling. I told him about all of my woes.

Even more importantly, I explained that I was disappointed that it seemed that the hospital was missing a golden opportunity in not giving me all kinds of examinations about the breathing issues.

He replied that the hospital was concentrating on the virus before dealing with anything else but I told him that I wished that I could be so confident. I was rather sceptical on this point. I had a feeling that the hospital was going to discharge me once this virus has gone and they would miss a golden opportunity to settle the matter of my breathing once and for all.

One thing that I mentioned was that I wasn’t prepared to support any more of this “going round in circles”. With Waldenstrohm’s Disease there’s a timeline. No-one with this disease has survived more than 11 years and I’ve had it for at least 7 years. I made it perfectly clear that with only 4 years left at the most.

With the hospital having already wasted 18 months of what little time I have left and not resolved this issue I was not in the mood to have any more of my time wasted.

He told me that he’d made a note but I remain unconvinced.

A second incident worth noting was that I had another relapse today. I’ve moved my room around a little and spent most of the day sitting in my chair by the radiator. In the late afternoon I came over all cold and had to wrap up with my fleece jacket and also a blanket across my knees.

The nurse took my temperature but there was no fever. But nevertheless I really was cold and I couldn’t wait to tuck myself up in bed.

But this morning was worth noting too. I was wide-awake at about 05:30 and couldn’t go back to sleep. In fact I was wide awake.

I had some fibreglass repairs to do for something so I was doing it outside this building. People came past to look, to see and to talk. One woman came past and engaged me in conversation. She said “don’t ask me to do this”. I suddenly remembered that she’d worked for the company in Crewe that built fire engines … "Mountain Range" – ed … as a fibreglasser. I said “if I need your help I’ll call for you” to which she made some kind of dismissive gesture. I carried on and sure enough half an hour later I had to make a box out of fibreglass so I used a plastic container as a mould. I couldn’t make this box correctly – there wasn’t enough resin. It was letting in water and wasn’t watertight. It was starting to go darker so I thought that I’d give it up as a bad job and try again tomorrow. There was an old guy, obviously rather feeble in the head, came past and asked me where I’d had the best medical attention and the best driving school. I said “Congleton” as I’d actively been followed by the medical centre in Congleton for something or other. He made some kind of dismissive remark about that. He called over some other people whom we knew who had come to fetch him. He said “did you hear what he said just then about this health centre and driving school?”. They obviously did because they said “if that’s what he thinks, then he’s entitled to think it”. This little old feeble guy continued to make a mockery of whatever it was that I’d said about going to Congleton.

Back at school a girl had been placed in detention. She was about 3 years younger than me. Because I was busy doing an exam they put her in the same room as me. My exam was to write about potatoes. I hadn’t done any revision but I reckoned that I could bluff my way through this exam quite comfortably. I set to work and found that I finished quite easily with plenty of time left. I was very happy with what I’d written. I began to talk to the girl. She’d been placed in detention for something strange and had a lot of work to do as a result, one of which was to write a letter of apology to the headmaster so with nothing better to do I wrote it for her and printed it out. The ink was feeble on our printer. We spent most of our time while she was in detention talking about school, about her classes and people in them. I found to my surprise that not only did I reckon that she an attractive young girl, she had a lot to say for herself that was extremely interesting. I found myself thinking that this is a girl who would be the kind of girl that I would like to have as a companion. We talked endlessly about all kinds of problems and difficulties. She asked me if I would take the note that I had typed out to the headmaster and tell him that she’d print it when she could find a decent printer. Anything to keep her happy, I took it to the headmaster’s room. He was in the middle of a meeting. I recognised all the teachers of course. One of the things that he was saying was that there wasn’t a single pupil in this school now who had anything for which to be reproached. He wasn’t expecting a report from anyone. and there I was, standing at the door with the report from this girl. I was highly tempted at that moment to walk in and hand it to him. But a couple of teachers noticed me hovering around at the door outside and switched the conversation to Welsh. Of course I could speak Welsh so I could hear all of these intimate details going on. It was quite obvious to anyone that I was listening and making notes. I was half-expecting to be called in at any moment to find out what I was doing and why I was there but the conversation carried on and on.

But going back to this girl, she was as I said about 3 years younger than me, long, straight auburn hair and lived in one of the villages around Wrenbury, somewhere like that. She was talking to me about how the school was basically divided into 2, the rich people and the poor people. I asked which one she was and I could see that she immediately went on the defensive so I gathered that she was one of the poor people. That suited me fine because I was from a council estate. I really felt that I had a lot in common with her and how I would really really strike up some kind of rapport with her and maybe develop a relationship with her but I was certainly learning a lot about the lower echelons of the school that I never knew before that was really interesting.

She would have been the kind of girl with whom I would have been more than happy to be associated. It was another one of those dreams that gave me a pleasant, warm feeling just like that WORLESTON DREAM of several years ago and how I wished that it would never end until I’d finally managed to get my hands on this very nice and pleasant young girl.

I can see her now. She had long, straight auburn hair and dressed in a school uniform, white blouse, school tie, navy blue cardigan, blue pleated skirt that was fairly short, white knee-length socks and typical Mary-Jane type shoes, exactly the kind of thing that you’d expect from a girl who was maybe in the Remove or Lower Fifth, which would seem to fit in with my 6th-form exam that I’d just been taking.

This dream was so realistic and so comfortable that I couldn’t go back to sleep afterwards. It was one of those rare dreams that was preying on my mind because it felt so right. It’s really hard to explain anything about this. It reminds me very much of that dream that I had about that girl from Worleston all those years ago, it really was such a nice comfortable, proper, warm kind of dream. It’s a shame that it had to end.

So right now I’m going to go back to sleep and try to have part two of this interesting dream in which I finally manage to get the girl.

But I doubt it very much. If only things work out how we would like them to be but the subconscious isn’t like that, is it?

Friday 11th November 2022 – I’VE HAD ANOTHER …

… bad, miserable day today. Not quite a relapse but it was the nearest thing to it.

Last night I went to sleep fairly early and slept right the way through until the alarm went off at 06:30. There’s a very vague feeling of being awake at some point but I really couldn’t remember.

After my early morning orange I had a look at the dictaphone. Sure enough, there was a couple of files on there from some point during the night. I awoke in a hospital ward dreaming about having some sprouts fried in butter with mashed potato and a quorn fillet. This dream was so realistic that when I awoke at about I dunno 01:40 I was quite ready to sit up and eat it. The cooking was brilliant and the smell was gorgeous. It was really nice and I was really looking forward to it.

I was up arguing yet again with a group of people, boys and girls, about all kinds of different things. We’d started off somewhere or other and had to walk an enormous distance. It originally began with me being at home, the phone ringing and whoever answered it taking what sounded like a taxi job. She asked me “how long would it take me to get to Rome?”. I thought “at least 3.5 hours” so she told the person and they seemed to accept the time so we had to get the car ready, find a map etc. It was an area of Rome called Dommodossola which is actually a town on the Italian border between Switzerland or Austria or somewhere like that. I had to go to the Rome Railway Station East at Dommodossola in Rome and pick up these people who had been mistakenly told that there was a train north but there wasn’t. This was the only way that they could return home. We took the job and I prepared things and had to set out to walk there. It was a complicated route – we were in these villages and moors and on the fells. One village seemed very much like another, one road seemed like another. We took short cuts through people’s houses. Some kind of argument broke out about something to do with history. I found myself on my own in this village high on the hills on my way to Rome.

On a more depressing and urgent note the battery indicator on my dictaphone has started to flicker, an indication that the batteries are going flat. And the spare batteries and battery charger are still at the Hotel de France in Brussels where I left everything when I was admitted to hospital.

But never mind. I sent an urgent SOS to Alison which she acknowledged.

Yesterday I mentioned that I’d written a letter about the wicked events of yesterday afternoon. This morning the houseman, or housewoman in fact, came by to check up on me. Of course with it being a Bank Holiday in Belgium today there are no specialists or Professors about but I gave my visitor the letter and she promised me that she’d leave it on the desk of her Professor.

As for what happens next we’ll have to see, but if she really did pass it on I’m prepared for a fight. I’m not being treated like that.

That was all of the excitement as far as the medical staff goes. No specialists and no Professors means no examinations so nothing is going to happen until Monday at the earliest. It’ll be a nice relaxing weekend, I hope.

Later in the day Alison turned up. She’d remembered my batteries which was really nice of her. We had a good chat which was also very nice but it’s the last one that we’ll have for a while as she’s off to the UK tomorrow on family business tomorrow for most of next week.

During the course of the day I’ve found myself slipping into the abyss. I’m not sure whether it’s my illness having a little relapse or whether it’s the Black Dog that’s awoken. It might be the former of course but if it’s the latter it’s hardly a surprise with everything that has gone one just recently.

But there was something that brought a smile to my face this evening. When they brought round the evening meal, the lid of the coffee pot – we have little 500 ml thermal coffee pots each -was screwed on so tightly that it took me 5 minutes and quite a wrestle in order to loosen it.

Actually it was one of the young nurses who had screwed it up so tightly and she didn’t look as if she had the strength.

“Woe is me” I thought to myself “that I didn’t have the strength to undo it”.

It reminded me of the story of the man who went to the doctor. “Do you remember the pills that you gave me to give me strength?”
“Ohh yes” replied the doctor. “Did they work?”
“I don’t know” replied the patient. “I can’t get the top off the bottle”.

I’ll get my coat.

Tuesday 8th November 2022 – I REALLY DON’T …

… know what happened to me today.

When the alarm went off at 06:30 today I was sound asleep. One of the deepest sleeps that I’ve had for a while. And when it went off at 06:35 it awoke me again

When breakfast came round at 08:00 the nurse awoke me to eat it, and a relentless chain of nurses, doctors, specialists and the like continually awoke me throughout the day.

On the way in my bed down to an ECG scan I fell asleep twice as well.

In fact I’ve been in a deep sleep for most of the day today. Right now I just want to go to sleep again and I really don’t know why.

But at least after the panic last night when I had a relapse they are taking things seriously. They have examined my chest thoroughly, carried out a few examinations on my right leg and checked over a few other things

There was the dictaphone to check over too I was in hospital last night being seen to because of this problem that I have with the chest. They were busy arranging me and I was trying to make myself comfortable. There were some temporary blankets that somehow ended up on fire and some of the blankets fell off. I realised that I wasn’t as cold as I had been so I must be improving. I went out past the office where people like my friend from Munich would sit but it was empty. I was gradually being brought downstairs, I thought, presumably for another examination but I didn’t really know

We all also went to Vire last night, to the cathedral, but it was nothing at all like the real Vire. We drove there, drove through the town to see the sights. We had to follow the road round. We thought that this would be where all the signs were for various things and sure enough there was a sign for the cathedral. We went that way and parked, got out and then walked al the way down these steps to where the cathedral was and began to have a good look round

There have been so many people in here today interrupting me that it’s only now that I’m on my own.

My Welsh class today was a fiasco. There were far too many interruptions for me to concentrate on what was happening in the lesson.

Apart from that it’s been a busy day and I’m hopeful that they will eventually find out what’s going on with my body.

However I’m not to hopeful. It seems to me that with my underlying illness, my body is slowly breaking down and it may shortly be beyond repair. That’s really disappointing but it’s inevitable that this would happen.

With Waldenstrohn’s Disease, no-one has survived more than 11 years. I was diagnosed 7 years ago and I probably had it a year or 18 months before that.

My only regret is, as you know, the fact that they have taken so long to deal with this breathing issue – 18 months, in fact, but even that has been overtaken by events with my mobility issues.

There’s really no end to it.

MONDAY 7th November 2022 – I’VE HAS A …

… relapse today.

And I was doing so well too.

This afternoon I started to shiver and it seemed as if someone was standing on my chest and I can hardly breathe. It’s no use trying to cough either because I can’t without hurting myself.

The nurse checked my temperature and blood pressure and she decided that I have a fever with a temperature of over 38°C, a far cry from a few hours ago when it was 36.2°C

Last night I slept all the way through from about 00:20 until the alarm went off at 06:30.. And there’s stuff on the dictaphone from last night too. I can’t remember much about it except that there was something about being in hospital and a kitten, and I can’t remember whether I had to get better first before I could stroke the kitten or whether I had to stroke the kitten before I could get better. I know that when the alarm went off at 06:30 this morning I was looking for a kitten rather than the telephone to switch it off so I dunno

After I’d washed and changed I sat in the chair where I fell asleep several times, usually to be awoken by a doctor who wanted to examine me. And they seem to have taken seriously the problem of my knee. No fewer than two doctors plan to give it a full examination.

There were other doctors too who examined other bits and pieces of me too. It looks as if things are moving rapidly, but this was before the relapse.

Alison came in the middle of everything and was unlucky to catch me in a right state. She’s bought me some vegan chocolate which was really nice,

After she went they took a blood sample and later on in the evening another cute female houseman came to see me and examined me.

So now I’m off to bed, unless the houseman comes back again. And I’ll see how I feel tomorrow. I can’t feel much worse than I do right now.

EPIC HALL

The Poisoned Pen (or Poisoned Chalice, more like) – or my relentless struggle against reality