Tag Archives: chemotherapy

Thursday 7th April 2016 – WHY DO I ALWAYS …

… seem to be given the perishing room-mate who snores? There I was at 05:30 still not able to drop off to sleep.

But I must have gone off at some time or another because I was on my travels again. I started off trying to make some sandwiches with white bread but every time I went to spread anything onto the bread, it tore the bread away from the crust and after a while that started to annoy me greatly. I decided to go out for more bread but I needed someone to do some baby-sitting for me while I was out (don’t ask me why) and just at this moment a young girl – someone who has featured once or twice in our nocturnal rambles – came along. My idea was to grab hold of her to stand in for me but she was rather uncatchable, discreetly drifting away every time I tried to ask her to help out. But in the end off I went, in an old early base-model Mark I Ford Cortina 2-door, dark blue. MY route took me up a track at the back of some houses, through the daffodils, only to find my way blocked by an old car that I hadn’t noticed, so I had to retrace my steps.
A while later, I found myself in France again and I’d been following this trailer with an old car on it – a Peugeot 203. This was taken off the trailer and pushed up an overgrown lane to where there were another two of them. I couldn’t stop there as it was on the side of a hill, quite exposed and with bad bends, so I parked up in the nearby village and set out to walk back. even though it was a Sunday, there were hordes of people about and I wanted things to be much more quiet than this but I just couldn’t escape the people. I lost my way in the village and was surrounded by curious onlookers and I couldn’t find my way to these cars. Most of the people were British and there was clearly something going on of which I didn’t like the look at all – a drugs deal or other criminal activity maybe and this was an uncomfortable place to be. And somewhere along the line, this girl appeared in it again.
And yet another while later, I was in a car with, having made a dramatic reappearance, this same young girl. We were watching these British people and they were making a film – something like one of the 1970s “Cops and Robbers” dramas on British TV. This involved a car chase – the part in which she was interested – and so was I when I saw that the car being chased was a gorgeous Daytona Yellow Ford Taunus – the model from 1973-76. It was the most beautiful car of its type that I had seen for years and I had my heart set on it but I knew in my bones exactly what was going to happen to it – and I was right too. They slammed it right into the external corner of a wall and put a huge V-shaped dent in the front of it. I was furious and leapt out of the car calling them all kinds of names and in the end, after the chase had passed by, I man-handled the Taunus onto my trailer, which just happened to be attached to the back of my car. I asked this girl what her plans were for tomorrow and she told me that she “had to go to check out a scene for the Sweeney” – one of the aforementioned “Cops and Robbers” programmes and I took it to mean that she had to go and look at a location to see if it would be suitable for filming. I thought to myself that she isn’t half having some interesting and important tasks for a girl of her age.

But it’s amazing in a way that the same person can appear in all three parts of my little voyage during the night, and that I was of the opinion that it was all interconnected in some way. It’s not the first time that I’ve stepped out of a little nocturnal ramble only to step right back into it later at more-or-less the same place.

Anyway, after this, I did finally go back off to sleep and I remember being off again, but being awoken at 07:30 so that they can take a blood sample, well before you’re back in the land of the living, means that wherever I went has gone forever.

We had the cleaner coming along quite early and she showed quite clearly that she must have studied under Hattie Jacques. It must have been the turn of our room to have “the works” because she went over it from top to bottom, to such a thorough extent that Hattie Jacques would have been quite impressed. I kept to my bed while she was at it. That seemed to be the safest course.

I had a whole stream of visitors – nurses, doctors, Professors and the like. And each one told me a different story about my stay here. But one thing became clear, and that was that my blood count isn’t so good. The transfusion that I had the other day brought the count up to just 8.1. That’s close to the critical amount of 8.0 and so they are proposing another blood transfusion to bring it up to something more like it.

First off though, was to have more chemotherapy. They’ve decided that I’m fit enough to have a second helping of that before they give me more blood and so they made the necessary arrangements. And remembering how things unfolded last time, they took it slowly. That meant that they didn’t finish it until about 18:30, by which time it was too late to do the blood transfusion and throw me out.

That disappointed me – it means that I’ll have to stay here for yet another night and go without sleep once more. It’s ruined my day completely, the effects of last night without sleep because I’ve been drifting in and out of sleep all day and I’ve not really been able to accomplish anything that I’ve set out to do. How I dream for a good night’s sleep and a proper day of some kind of effort.

Not only that, OH Leuven were at home to White Star Brussels this evening. I’ve never seen Leuven play, but the last time that I saw White Star, they had about 200 supporters and a brass band. I was looking forward to going this evening, but I’ve had to rule that out which has annoyed me greatly.

Alison came by the visit too. Her cousin had some over for a short stay so she had been to pick her up at the railway station. On their way back, they came to visit, bringing a few edible bits and pieces with them and they will go down quite nicely.

So now everyone has finished what they are doing and we are supposed to be settling down for the night. But fat chance of that with my neighbour rattling off like he is. I’m thoroughly fed up of this, I can tell you.

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Wednesday 6th April 2016 – THE BEST-LAID SCHEMES …

… of mice and men gang aft agley, as Rabbie Burns once wrote. And how right he was. I reckoned that I lasted maybe for 5 minutes of my film before crashing out.

I was only awoken three times during the night – once by the usual need to take a stroll down the corridor, the second which was by one of the nurses who wanted to take my temperature, and the third time my a nurse asking me if I was okay. And had my reactions been any quicker, she would have had a pillow in the face as well. GRRRR!

But during the night I’d been looking at old cars for sale. I’d come across a garage that sold classic cars and my eye was caught by a maroon Wolseley 1300 (the same as Nerina used to have, except that hers was Black Tulip) that was for sale at €1,883. But I ended up playing in a rock band once more with Hans and also with a female on drums. We were playing at a concert up on the Chester road, slightly north of the Bluestones traffic lights near Acton (and we’ve been here before) and warming up, we played an impromptu blues number that I made up on the spot, called “I’m the accused”. Of course, the word “accused” is one of the easiest words in the English language to rhyme – there are so many other words that go with it, but it was still impressive that I could write a whole song “off the cuff” while actually performing it. And if I could write music, I’d write it down because I can still remember it even now.

And so the morning came round quick enough and I was soon tucking into breakfast. And with a sweet smile, I was even able to negotiate a second pot of coffee. I then had a shower (which made me feel so much better after yesterday) and a blood sample.

The blood sample wasn’t so easy though. They tried to take it out of the drain in my arm but for some reason that had become blocked. In the end, they had to take out the drain, fit another one in the other arm and take the sample from there.

An hour or so later they were back. “Your blood count is only 7.3, so we need to give you a transfusion today”
“So what was if before I had the transfusion on Monday?”
“6.5”
No wonder I was feeling like death in Givet last weekend.

We then had some amusement with the cleaner too. Doing her best to speak English to me (and I will never ever mock anyone’s attempts to speak a foreign language), she said “you must stay on your bed when I’m cleaning. It’s dangerous when I’m around”
“I know the feeling” I replied. “People often say that it’s dangerous when I’m around too”.

I found some time (although not very much) to start to write up the notes of my Canada 2014 voyage – I really need to get cracking with this – but it ground to a halt at about 15:00 when they came to give me more chemotherapy. This time, they took their time and it was soooooooo slowwwwwwwwwww. The blood came next and that needed to be heated to 41°C so they had a bizarre kind of coil heater machine to do it.

Foolish me should have gone to the bathroom at that moment because the blood transfusion was even slower. It crawled along and wasn’t finally over until 23:00, by which time I was bursting.

It meant that there was no chance whatever of me leaving the hospital today so I’m in for another night. And my neighbour is snoring like a pneumatic road-drill. It looks as if it’s going to be on of THOSE nights.

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Tuesday 5th April 2016 – I DON’T KNOW …

… what they put in one of those pochettes that they gave me, but I’ve never known anything like it.

They had a timer and some kind of feeder set on it. We started off at 20ml/minute (or something like that) and it gradually increased every 30 minutes or so until in the end I was having this stuff at 120ml/minute. And this is where the roof fell in.I went freezing cold, shivering like I have never shivered before, and having attack after attack of nausea. It was so bad that in the end they were obliged to switch if off for an hour while I recovered, and then start up again, with a limit of 50ml/minute.

But for that 10-minute period, I felt really and utterly dreadful.

Despite my bad night, I had a good sleep and didn’t wake up at all, not even for the bathroom. We didn’t have the same early start as we had in Montlucon either – about 07:20 if I remember correctly.

Breakfast was, as you might expect, jam butties with coffee (which was very nice) and then I was introduced to the student nurse who has been assigned to me. She’s from Denmark apparently, and the idea is that we can both learn Flemish together. That’s not quite what I had in mind, although there are some Flemish words that I learnt when I was chauffeuring in Brussels that I’m sure she doesn’t know. And she went and liberated another pot of coffee for me too, which was very nice of her.

The dietician came round too and spent half an hour with me. In quite a contrast to Montlucon, she knew what she was talking about. I have a severe protein deficiency, and need to increase my intake of fats. We spent all of the time talking about my diet for when I return home, and she’ll try to organise a few things here too.

I had a blood pressure test and pulse check too, but how they ever think that they are going to obtain a serious and meaningful reading from me when they send in four young student nurses into my room to make the measurements I’ll never know.

Lunch was a vegan chili (with soya chunks) and tomato sauce, with steamed potatoes and for what it was, it was delicious. And then we got down to business.

I told you about the first part of the treatment. That apparently is for marking the bad cells in my body. And there must have been plenty to affect me like that. And then once I’d recovered (which took a while) the system was cleansed for 20 minutes or so and then I was given the second stage of the treatment, interrupted by tea which was … errr … jam butties.

By 19:00 all of that was finished so I could prepare to receive my visitor. And sure enough, at 19:30 Alison appeared for a chat. She brought me a towel which was good of her, and some soya yoghurts and desserts, and a fruit salad (which was delicious for supper, thank you).

Now I’m going to stay awake until I fall asleep (which isn’t an Irishism at all – usually I go to bed and talk myself into sleeping) and watch a film maybe. There’s no alarm set for the morning either, for I imagine that I’ll be awoken by the hustle and bustle of the nursing staff.

But I need to increase my intake of proteins and fats.

Where’s the nearest fritkot?

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Monday 4th April 2016 – I WAS UP …

… quite early this morning and on the road almost straight away. I wanted to be at the hospital early and it’s a good job that I was because there were traffic queues and road works all over the place.

Once I’d found a good spec for Caliburn (there’s an outside car park that I needed to locate as the main car park has a 2-metre height limit), I went off on a route march to sign myself in. And that reminded me of the queue for registering a vehicle at Riom – I was ticket 259 and they were dealing with n°208.

But with 10 registration desks open (not like at Riom where there is just one) I was all done and dusted within 10 minutes and even had time to go to the café for breakfast. That worked out to be somewhat expensive for some bread and jam, but it would have been a lot cheaper had I realised that what I took to be orange juice was actually freshly-pressed mango.

I found the day hospital, and it’s nothing like Montlucon in that there were probably 100 people there. But I was pretty quickly whisked into a side ward and had a drain fitted. From there, I was shunted off into another room to wait for my blood.

But it’s not like Montlucon in another respect either. I hadn’t been in there long before someone from the Welfare Department came to see me. And never mind the interminable wrangle that we had at Montlucon (and is still going on) about payment – she was brandishing photocopies of my Insurers’ registration form and we filled it in on the spot. They are of course much more used to my situation here and are fully prepared.

We also discussed the situation about my accommodation for when I’m released. She went off and came back 20 minutes later with the news that I have been booked for two weeks into the “family guest-rooms” at the old hospital in the city centre. That’s pretty quick, I have to say. And it’s pretty good news too. All of which is compounded by the fact that the parking here at the hospital (€4:00 per day for inmates) is capped at €12 per week for long-term visitors, and they expect me to be undergoing treatment for … gulp … six months. And so this two-week “stay of execution” gives me time to think of a “Plan B”.

But treatment here wasn’t as straightforward as it might have been. They needed to do all kinds of tests and so on that hadn’t been carried out at Montlucon apparently, and by the time that they had finished everything and the blood had finally arrived, it was 15:30. For food, it was jam butties because, having caught them à la depourvu, there was nothing arranged for me, but at least there was a free coffee machine just around the corner.

By the time that my transfusions were over, it was 19:30 – far too late for chemotherapy and far too late for me to go anywhere else, and so they have found a bed here for me until Wednesday, and chemotherapy will start tomorrow morning. But I’ve missed the evening meal tonight because of all of this, and so I had … errr … jam butties for tea. However, I went down to Caliburn for my things, and profited by stuffing the suitcase full of goodies.

But damn and blast my neighbour. I’m having to share a room and of course, he snores. It’s been a long time since I’ve been still awake at 01:00. This is going to be a very long night.

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Thursday 31st March 2016 – TODAY’S THE DAY …

… when I might learn something about my state of health and whether the Hospital at Leuven will do something about it.

But before I can think about that, I have other fish to fry. Hans is coming back from Zeebrugge this morning and we’ve agreed to meet up at the Motorway serviced just down the road from here for breakfast.

I was up early and off out to fahr’n fahr’n fahr’n down the autobahn about 3 miles to the service station where I waited.

And waited.

And then I had a phone call – “just pulling into the Services now – it was Tienen, wasn’t it?” as a matter of fact, it wasn’t. I was at Heverlee and so a quick thrash down the motorway brought me to Tienen and breakfast.

We had a good chat for a few hours and then I had to return to Alison’s, for she was intending to run me into the hospital, which was very nice of her and something that I appreciated a great deal.

First port of call was for a blood test. And sure enough, my blood count has gone quite down. It was 9.1 the last time I was here, but now it’s down to 7.8. That’s set a few alarm bells ringing at the hospital, make no mistake.

The doctor who saw me asked me quite a few questions and gave me a good examination, and then summoned her Professor – the kind of thing that always makes me feel better. But the news that I received deflated me rather rapidly. It seems that the Hospital here at Leuven thinks that I have a different type of lymphoma than that diagnosed by Montlucon. They didn’t understand the need for the removal of the spleen and, in agreement with the opinion of the District Nurses who have been visiting me at Liz and Terry’s, they don’t understand why I need to have these anti-coagulant injections and think that they might be doing more harm than good. The first week or so, yes. But today it’s long-beyond the bounds of necessity and I can stop immediately.

As for treatment, they propose a course of Chemotherapy. There are two types of this – a standard type that is the most common and which is recommended in 99% of cases. There is another type – about 10 times more expensive (and so it’s not reimbursed by the Belgian authorities) and 10 times more effective. And this is what they propose for me – a course of treatment that might last for as long as 6 months and they intend to start it on Monday morning. Furthermore, it has been reimbursed by my Medical Insurance in the past in other cases, and someone from the Social Services department of the hospital will be coming to see me on Monday to “help me” make the application for this treatment. Yes, not backwards at coming forwards, here at Leuven.

They aren’t sure how this is going to pan out though. I’ll be treated as an out-patient but I need to spend a few days recovering from each session. I’ve told them that I’ve nowhere to go to stay (I can’t keep on relying on other people’s generosity) so they told me that there is some guest accommodation at the hospital. The Social Services department will help me here too, to see if I qualify for a place.

And so here we are. I had my operation on 27th January and since then, nothing much has happened at Montlucon with regard to my illness. Here at Leuven, they have a decision within 9 days and propose a course of treatment starting in 4 days time.

It’s very easy to say, with hindsight, that it was the wrong decision to allow Montlucon to go ahead with the removal of the spleen, but there was a good chance that it might have worked and I was worried about any further delay. Had I known that the treatment would begin less than two weeks after my first visit, maybe I might have thought differently. And then again, Leuven has had access to all of the tests and analyses carried out by Montlucon which aided quite considerably the speed of the diagnosis. How long would I have had to have waited for all of this?

We went shopping afterwards to a Charity Shop rather on the style of a Canadian Value Village. Loads of interesting furniture, including a lovely coffee table that, when cleaned and polished, would look lovely in my little house. But all of this is a long way away.

Anyway, I’m off for the weekend. I’ll find a river somewhere and lodge myself in there for a few days to relax. I need it.

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