Tag Archives: mapthera

Monday 9th September 2019 – WITH HAVING TO …

… go to bed early last night in order to be on form for today, it goes without saying that I had another bad night last night.

Still awake at 01:30, and when I finally did drop off, it was just in 20 minute segments where I was off on various travels. When I unwind the dictaphone at some point in the future I can tell you all about them, but what I can say is that at one point Castor and I were joined just for a change by Pollux.

Is it the first time that the aforementioned has accompanied me on a nocturnal voyage? I shall have to check

And it was one of those nights where I kept stepping back into the voyage at exactly the same place that I had stepped out. That’s something that I’m noticing is happening more and more frequently these days and when I was having similar situations back 15 or so years ago, I found myself able eventually to move onto a third plane, and that’s when it all became exciting.

That was during the period that we were researching dreams (that lasted from about 1998 to 2006 or so) for someone’s PhD at University and so our individual research was never individually published. But I still have the notes somewhere and I’ll have to look them out when I’m back home.

The spell was however unfortunately broken round about 04:00. The batteries in the dictaphone went flat at an inopportune moment and, determined not to miss a moment, I left the bed for a spare set.

They were flat too so I had to find some more and in the meantime find the charger to charge up the flat ones.

Unfortunately this meant that by the time that I was organised and went back to bed, I’d missed my spot and ended up going off somewhere else instead and isn’t that a shame?

When Amber banged on my door, I’d been up for quite a while. Before the third alarm in fact and that’s a rare deal right now. So we went outside ready for school.

Amber doesn’t like the idea of travelling cramped up in Strider so she had negotiated use of her mother’s car for me. It was cold, damp, misty and foggy outside and I had to clean off the car before we could go anywhere.

We negotiated out way through the queues at the covered bridge (the highway is down) and much to my (and everyone else’s) surprise, the St John River valley was clear of fog and mist. As regular readers of this rubbish will recall, that’s usually the place that GETS it first.

The girls clambered out at school and I drove back to the Co-op for apples (seems that we have a little fruit-eater amongst us) and to Tim Horton’s for bagels for me for breakfast.

At the tyre depot the morning passed quickly. There were lots of people around there and we were quite busy. I sorted out some paperwork and then, grasping the nettle, I telephoned the hospital back in Leuven.

They offered me a blood transfusion on 11th October on a “take it or leave it” basis. And so I took it. After all, chemotherapy and mapthera didn’t work as we know and the product that they are trying out on me is still in the trial stage so it’s not licensed as yet in North America.

And with having missed already three of my four-weekly transfusions, heaven alone knows what my blood count might be like. It was knocking on the “critical level” back in June.

Nevertheless, I’m going to try to see if I can push it back a week or so. I have may things to do that are as yet undone and there are many opportunities waiting to come my way and that won’t be accomplished if I’m not here.

After that I went to see Ellen. She’s quite ill too and doesn’t look anything like the woman that I remember. It’s a shame but I reckon that we will both be stoking the fires of eternity together, and quite soon too. But I kept her company for an hour or so and we had a good chat.

At lunchtime I took Rachel’s car back home and picked up Strider. Then went to the Irving for lunch. Afterwards I hopped off to pick up my mail from my mail box but SHOCK! HORROR! the whole battery or mailboxes out on the River du Chute road has been flattened.

A brief drive enabled me to find another battery of mailboxes but my key didn’t work. Off to the Post Office then, where she explained that the boxes have been moved and I needed a new key. She confirmed my Canada address and gave me a new key to a different box

But even more SHOCK! HORROR! It seems that my new licence tags for Strider haven’t come through. They expire at the end of the month so I need to chase them up before I go off to Montreal and Ottawa.

And I forgot to add that with the road up there being as it is and with Strider being as he is, it was an exceedingly lively drive. Next time that I go to Labrador I shall need to take with me a change of underwear

This afternoon there was yet more work to be done. Darren needed to take some heavy springs down to the welders in Woodstock so I went along to help. By the time we got to Woodstock we were half a million strong but in the big Chevrolet lorry there was plenty of room.

Having brought the petrol back on Saturday it was the turn of the diesel. But this time, now that the lorry is mobile again, we had a proper licensed fuel tank to move the stuff about.

I have deliberately refrained from mention the world’s worst customer service that I have ever received – service that would knock Belgium’s legendary incivility to its customers into a cocked hat.

I rang Walmart in Fargo about the splash screen on my laptop and after repeating my story 7 times to 7 different people the best advice that I was given was to “reformat your hard drive and tough s**t for your data”.

That’s advice and assistance that I can well do without.

There was a major issue trying to reconcile the cash account this evening on closing so we had to stay behind to resolve the problem. Eventually, at about 18:30 we suddenly twigged – payments received after closing on Saturday lunchtime, credited though on Saturday, had been put into the till on Monday instead of being added to Saturday’s pouch.

Of course, neither I nor Rachel had been there at close on Saturday or opening on Monday, had we?

It meant that we weren’t back home until 19:00 and, much to our surprise, the girls had cooked tea. I went for a shower afterwards and then tried some of Rachel’s home-brew ice coffee, which was delicious.

Now even though it’s early, I’m off to bed. It seems that the school run is required for tomorrow (the school bus arrives too late, what with the issues on the bridge and Amber has already been cautioned once by an unreasonable Principal, and she can’t take a passenger on her scooter) and once more, Yours Truly has drawn the short straw.

And a big hello to my new readers from Montreal and Mississauga.

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Tuesday 30th August 2016 – WELL HERE I AM AGAIN!

That’s right, all bright-eyed and bushy-tailed … "well, yes" – ed … here in the hospital, ready for my final session of mapthera.

And bright-eyed and bushy-tailed I ought to have been too, because I was asleep relatively early too. Not that it did me much good of course, because round about 01:00 we had a party of fellow-residents returning from a night out in the town and they certainly let everyone know that they were back.

Not only that, I had a nightmare too! How long is it since I had one of those? Things are definitely being rather depressing around here right now if that’s the level to which I seem to have sunk.

An early start and a reasonable breakfast in the bright morning sum did much to restore my morale and then after a little relax to gather up my wits, not that it takes too long these days … "you said that the other day" – ed … I set off for the long trudge up the hill to the hospital.

I was here early too, and soon installed in a nice room by a couple of my favourite nurses (but not the cute and sweet Tara as yet). It’s nice to be on my usual ward with everyone so friendly and helpful. And I had a new doctor too. It looks as if Hermione is now a thing of the past. No more Ericus Reparo.

And we’ve had some very bad news too. They took my blood count and it is DOWN – from 12.0 to 11.0. It’s true to say that 3 months ago I would have happily settled for 11.0 and gone home smiling and whistling, but not after I’ve been up as high as 12.0. Here I was, thinking that I was out of the woods. It seems however that I have merely moved into different woods.

On the other hand, they have now made a formal announcement of the illness that I have. It seems that I have Waldenströhm’s disease (I should have kept well-clear of Waldenströhm, I suppose). It’s quite rare, which is probably why they were having issues with dealing with it at Montlucon, but then again it’s not as if I’m likely to have anything plebeian, is it?

They talk about vision loss, which as regular readers of this rubbish will recall is something that I have mentioned frequently over the last year or so, and a change in mental state. Well, you can all make up your own minds about that one.

They also say that it’s incurable, and that there’s a life expectancy of between 5 and 11 years (now, of course, 4 and 10 years) and I don’t like the sound of any of that at all. But as far as you lot are concerned, at least it gives you all some kind of idea of how long you have to suffer theremaider of this rubbish that I churn out.

I had all of the antidotes and calmants and stuff like that, and then I had the mapthera. That didn’t take too long and by 17:00 I was all done and dusted, having had an hour or so away with the fairies meantime. Now I have to wait the 18 hours to check for the side-effects, and I do hope that my room-mate doesn’t snore. And I suppose that he’s hoping that I don’t cough.

Now here’s a thing. In the absence of the cute and sweet Tara, I’m being attended to by the just-as-cute and just-as-sweet Evie. And she wants to know why it is that whenever she takes my blood pressure, it’s always higher than when the other nurses take it.

Ordinarily, I would tell her – but not when my room-mate is listening and the door to my room is open.

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Wednesday 17th August 2016 – I HAD ASKED FOR …

… a good night’s sleep last night. And did I have one? Did I heck as like.

It wasn’t the fault of my room-mate either. He was one of the better ones that I have had. And there was someone down the corridor talking in his sleep which might have been quite interesting had my Flemish been any better. But despite all of that, I was still awake at 02:00. But why my room-mate would want to have a good wash at 04:20 is totally beyond me.

I did manage to doze off at some point but the usual morning clatter put paid to everything.

It must me this Mapthera though that is giving me this insatiable appetite that I mentioned the other week. I had a full breakfast and even sent for more bread. That was what started me off.

The doctor came and gave me the news. No side effects, no untoward problems, and so I can leave as soon as the nurses take my drain out. I asked about my blood test results. The red blood count has soared up to 12.0 – and that’s before the Mapthera too. Isn’t that a far cry from when I staggered into the doctor’s last November with a blood count of just 3.8.

The doctor is quite happy with that, but as for me, I’m delighted. I wasn’t expecting anything like this. I have to come back (to be hospitalised like this time) on 30th August and then that will, if everything goes according to plan, be the final treatment. And it’s bang-on schedule too, if you remember the initial programme. All I will need then are some regular check-ups after that.

But how regular will the check-ups be? That’s the big question isn’t it? It’s upon this that my future depends. Do I stay or do I go?

They took out the drain at about 11:30 but seeing as how it was nearly lunchtime I stayed on until I’d eaten it and then I set off in the delightful sunlight to walk back home.

On the way back I organised some bread and made myself a cheese butty. And then an hour or so later I made myself another one. See what I mean about this appetite.

Unsurprisingly, I crashed out for a while this afternoon. That did me some good. And with there still being no internet here, I went off to the launderette again where I was the recipient of a catty remark from a customer. But the advantage of being a foreigner is that you can pretend not to understand it.

I made a really good tea tonight – lentils, veg and boulghour with garlic fried in butter. All of this with rice too. And now, I’m going to watch another film and have an early night.

I hope that I’ll have a good sleep tonight!

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Tuesday 16th August 2016 – I HAD A BETTER …

… sleep last night. I was off with the fairies fairly early and although I had to leave the bed once during the night, I was pretty much asleep for most of it until I awoke – bolt-upright – at 06:10. And you won’t be interested in hearing where I’d been during the night either, because you are probably eating your breakfast or some such.

I had breakfast early too – at 06:30 I was up in the kitchen.And we had the muesli back as well, much to my delight. And afterwards I packed my things ready for the hospital, as well as having a little crash-out for about 10 minutes.

It was such a pleasant morning that I had no doubts whatever about walking up to the hospital, even though I had my larger, heavy bag with lots of stuff in it. But not, as I was to discover later, my slippers. And not my vegan cheese either. This was bad planning!

They weren’t expecting me at the hospital this morning. It transpired that they were full and so I’d been sent to a different ward – one where the people aren’t quite so nice and friendly (I’ve been here before). Waste of time me prettying myself up in case I were to encounter Tara, the cute little nurse, wasn’t it?

They installed me in a room and because I was first I could choose my bed. And so I’m next to the bathroom (ease of access) and away from the window (far too hot in summer).

It looked as if it was all going to be super-efficient. I was quickly rigged up with my catheter (didn’t feel a thing) and given the antidotes and so on. And then I waited

And waited

And waited.

16:30 or so when they came around with the Mapthera. Wasn’t that a waste of a day? but at least I’d had a lunch and it was something that I could vaguely eat too. Tea was a bit miserable though, especially without the vegan cheese, but luckily I’d brought one of the big packets of crisps that Alison had bought for me the other day. Good old Alison!

So now that I’ve been disconnected from the drip, I’m going to settle down for an early night and watch a film. I hope that my room-mate doesn’t snore or anything like that. He likes his TV so it’s a shame that he doesn’t have any ear plugs. I on the other hand have comfortable headphones, as long-term readers of this rubbish will remember.

I do hope that I’ll have a good night’s sleep.

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Thursday 11th August 2016 – NOW HERE’S A THING!

Yes, having had blood counts recently of 9.4, 10.0 and 10.5, today’s blood count is … 11.9. And that’s without any medication whatever. It compares with the “normal” figure of between 13.0 and 15.0, and the count that I had when I was first diagnosed with lymphoma – namely 3.8.

In fact, the hospital was so impressed that the doctor refused to give me the blood stimulator that I have every visit, and I was thrown out without having even a pretence whatsoever of medication.

This is astonishing, as far as I’m concerned. And so is the hospital. The doctor has said that I’ll have just two more sessions of Mapthera and that will be that. The next session will be next Thursday – and they will keep me in hospital overnight to check for side-effects – and again three weeks after that, and then I’ll be done. If things go according to plan, I’ll just need a regular follow-up to check my immunity situation and that my blood count is holding up.

And this is causing me no amount of issues. Had I still had my spleen and my immune system, I’d be half-way home by now so you’ve no idea just how depressed I am by that. I’ve said before that it’s not going to be the lymphoma that will kill me but something that I will pick up that I can’t fight off. I can’t even vent my spleen about that.

And not only that, the time scale is all wrong. They don’t know how often I will need following up and the second helping of Mapthera coincides with the date that I leave here. So do I risk renting a studio for 10 months and waste the money by being allowed to go back to France? Or do I bank on going home and then have to come back every week or fortnight at whatever the expense of the journey might be?

But nevertheless, it’s a major step forward and you’ve no idea just how pleased I am by my news today.

Last night I had another miserable night – still awake at 02:00. I was up though at 07:30 for breakfast (and still no muesli) and even had time to go for a shower before setting off for the hospital – on foot af course because I’m feeling better. I picked up my injection, but didn’t need it so the hospital nurse took it back to the apothecary.

But as for the nurse who saw me, she was quite brutal with my catheter and I can still feel the pain even now. Ohh for Tara – the pretty little nurse on the ward where I stayed who was so gentle with me.

Back here in time for lunch (and yet another brisk walk in the rain) and then after a good chat with Liz I crashed out for an hour or two – properly too. I was well away.

Tonight, I finished off the pastries and potatoes and veg and it tasted just as nice as last night. I shall have to look into the idea of making my own vegan pies some time.

So tonight I’ll try – yet again – to have an early night. And hope that I’ll be on my travels again. I was off during the night and I was in the company of the girl who has been described on many occasions as “The One That Got Away”. She didn’t get away last night either – we were planning on visiting the north coast of Norway or Russia, but ended up on a snowy island like Svalbard where we spent most of the night encountering polar bears. And it was another night where I awoke in the middle of it all to go off down the corridor and then went back to bed, and to sleep, right at the very position where I had left off my ramble. That’s been happening a few times just recently.

But Ironically, just as last time she featured in a nocturnal ramble, there she was on the internet having sent me a message just about the time that all of this was going on. This clearly signified something, but I’ve no idea what it might be.

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Tuesday 2nd August 2016 – I’VE HAD …

… my mapthera this morning.

But never mind that for a moment – it’ll come as no surprise for you to learn that I had the usual night last night – awake and down the corridor every two hours or so, including disturbing my room-mate in the bathroom at 06:00.

But after that, I was stark out and the nurse had to jump through all kinds of hoops to wake me for a blood test at 08:40. It was quite a job for her. And then after that, I had breakfast.

The plan after breakfast was to crash out yet again, but it didn’t quite work out like that. Just as I was settling down, they came round with the initial perfusion and a pile of pills for an antidote or whatever they are for. Once I was hooked up to that lot, I tried to settle down a second time, but then the doctor came round for a chat.

She told me that the blood test had shown that I could take the mapthera (which I had already worked out for myself) but that I’d have to stay in until at least tomorrow while they check up for side-effects. And so I’m stuck in here for yet another day now and that’s really getting on my wick now. I want to go home.

But something that the doctor said has dismayed me more than just a little.

“It must be dreadful for you living in this hospital with an environment like you’re in and with none of your personal possessions around you”.
“It does rather, but it’s impractical for me to commute back and to to France as things stand” I replied
“So have you considered moving to Belgium?”

And so it looks as if they think that I’ll be here for quite a while needing regular attention and follow-ups. This is the worst news possible as far as I’m concerned. I really didn’t want to hear this.

They fetched me the wrong meal for lunch and tea today but I still managed to eat a healthy meal both times. But my appetite seems to be back as I’m starving right now and I’ve been nibbling away at all kinds of stuff that I’ve had stored here and my room-mate is starting to look quite appetising.

And so apart from crashing out for an hour this afternoon, I’ve not done anything very much. This mapthera takes it out of me a bit but I don’t seem to have any side effects right now except dying to go to the bathroom – but then they did give me something for that this morning to try to reduce the water on my legs.

But I do hope that I can leave here tomorrow. I’m fed up.

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Monday 1st August 2016 – AHH WELL!

Yes, here I am, still here in the hospital.

I had a blood test this morning and while the doctor couldn’t remember the red blood cells count, there’s too much infection in my blood to give me the Mapthera. So here I have to stay while the infection goes down and, according to the doctor, it could be any length of time.

I have a new doctor too, apparently. I don’t know what happened to Hermione – maybe I’ve frightened her away – but this one doesn’t seem quite as friendly. I could be wrong, of course, but time will tell.

There’s been plenty of other bad news too. Firstly, I have a new room-mate. I thought that being on my own was too good to last for any length of time. He seems to be quite quiet, which is good news. I hope that he doesn’t snore.

And I’ve also had the Police here too. Someone has reported Caliburn as being abandoned (which is of course far from the truth, but there you go). The Police made all sorts of enquiries and actually asking the hospital if there was a patient of my name in residence didn’t occur to them until their enquiries were almost complete(ly failed). Anyway, they turned up this afternoon, asked me a couple of questions, and then cleared off, rather red-faced.

But it seems that I will have to do something about finding a new home for Caliburn. That will have to be top of my priorities when I’m thrown out of here. Last thing that I wanted was any interaction with the Belgian farces of law and order. Regular readers of this rubbish will recall a few occasions over the years …

I had the usual messed-up night and I did go off for a nocturnal ramble, but don’t ask me where to now. It’s gone completely out of my head.

07:40 was when I saw the light of day, thoroughly exhausted but brought to life, such as it is these days, by the clatter in the corridor now that everyone has started work after the weekend. The blood test was before breakfast nad, apart from lunch, that was the highlight of the day. I’ve not done anything else – hardly in the mood.

Having to stay here is depressing me, though. I want to go home, or, at least, back to my little room. The people here are very nice and very friendly, but it’s not a patch on being chez soi. I hope that I don’t have to stay here too long.

But there is some good news. The nurse has just this minute come by for a chat, and it seems that my blood count is now a record 10.5. It’s never been this high before since I’ve been ill, and certainly not under its own steam, and that’s something to celebrate.

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Sunday 31st July 2016 – I HAVE DONE SOMETHING …

… totally and utterly decadent today.

That’s right – after breakfast, I went back to bed. And there I slept until they brought the lunch around and awoke me. It’s a long time since I’ve done anything quite like that, but ask me if I care.

Mind you, I had a different kind of night last night. What I mean by that is that I didn’t go to sleep for ages and ages. It was certainly long-after 01:30 because I was still awake then. And then I had a restless night as usual, up and down on several occasions.

I was on my travels too – back in France at a building that I had converted into apartments and one of the tenants was being difficult. Someone else there knew him and remembered him being difficult at the last place where he was living.

I struggled awake all on my own at about 07:40 without the help of the nurse, but I wasn’t awake for long. Just long enough to stuff my breakfast down my throat.

After lunch, I did absolutely … err … badger all, just talking to a couple of people on the internet. I did manage a trip to the shower at about 16:20 – a good wash and brush up and a change of undies did me the world of good and I’m now ready for anything, even a visit this evening from Alison who brought me a packet of rice crackers. That was really nice of her.

It’s a long time since I’ve had such a leisurely Sunday and I reckon that it did me the world of good. The only issue now is whether or not I can go back to sleep this evening or will I still be awake like last night, long after midnight.

But with a bit of luck, this will be my last night there, if I don’t have a bad reaction to the Mapthera tomorrow. I’m on my own yet again tonight, so I ought to make the most of it.

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Friday 29th July 2016 – LAST NIGHT …

… was very much like the other nights just recently. Going to sleep fairly early and then waking up at regular intervals during the night. This is wearing me out and how I long for a really good sleep.

I did however fit in a little nocturnal ramble somewhere. I don’t remember too much about it except that it involved FC Pionsat St Hilaire, a shot at goal that hit the post and rebounded back into play and then the backspin on it that took it just over the bar and onto the roof of the net.

And I learnt something new about my room-mate – not only does he snore occasionally, he talks in his sleep too. But then I shan’t be troubled by any of that tonight because he left hospital this afternoon. I’m on my own tonight so I hope that I’ll be able to take advantage of it.

07:30 was when I awoke this morning, thoroughly exhausted, and it took me a good hour or so to come round. I had my breakfast much later than everyone else – apparently they wanted me to have a blood test this morning.

Hermione the doctor came to see me a little later on. The infection is going down now so they are going to keep me on the antibiotics until Monday. On Monday I can have yet another session of Mapthera and provided that there are no unpleasant side-effects, I can go back to my little room in town.

Talking of little rooms, the girl from Social Services came to see me a little later this morning. And she had quite a job because, as tired as I was, I was absolutely stark out. Well and truly crashed. She’s come up with another option of a place to stay. It’s further out from the centre where I want to be, but it seems to have private facilities (and kitchenette) and it’s slightly cheaper than where I am now. I shall follow that up in due course when I’m out of here.

I managed a good lunch, except for the diced swedes that were in a cheesy milk sauce and the soup which tasted of nothing but salt. I seem to be eating a little better now, which is good news.

This afternoon I had a chat with Liz and with Rosemary on the internet. Rosemary has invited me to England for a few days which is really nice of her. But I’ll need to be in good shape if I go. I don’t want to take a pile of microbes and viruses with me.

Later on after tea I crashed out again, only to be awoken by a nurse who wanted to take my temperature. This is what usually happens when I make myself comfortable – someone always comes along to spoil it. And I had a couple of attacks of nausea this evening. I don’t know why that was.

And so I’m on my own tonight. No room mate to distract me, keep me awake or to awaken me after I’ve dropped off. What this means in real terms is that there will be half a dozen nurses coming along to awaken me instead.

That’s what usually happens, isn’t it?

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Monday 4th July 2016 – JUST FOR A CHANGE …

… no-one disturbed me during the night and I had a reasonable night’s sleep. I was up and about a couple of times during the night as you might expect, and I was off on my travels too. And I would tell you all about it except that you are probably eating your breakfast or something right now.

I was up before the alarm went off too – beating the blasted church bells by a couple of minutes – and I had a good breakfast. I was not alone either – I had company for fifteen minutes or so while I tucked in.

It took me a while to sort myself afterwards and then went off to the hospital. A brisk 20-minute walk (and saying that it was brisk tells you how I’m feeling right now) brought me to the hospital, and I dropped off my nice clean bed-linen in Caliburn. That’s more stuff out of the way now. However, when I returned here later in the afternoon, I bought a pile of tinned stuff with me so we are quits.

But we have had some good news in the hospital, and that is that my blood count has gone up from 9.3 to 10.0 – all on its own. And that’s after two weeks too. Mind you, we’ve had a couple of false dawns before as you know, and so I’m more interested in seeing what it will be like in two weeks time.

We discussed my water retention issues, and they sent me down for a scan to see whether there was a thrombosis. That turned out to be negative, so they could start the next lot of treatment. They are giving me Mabthera, something that is designed for the chemotherapy-intolerant of those who have relapsed. I had that last time and I didn’t notice any side-effects and that’s positive news.

And, of course, no blood transfusion and that’s always good news too.

They have given me an emergency number to ring in case I have another major swelling issue like the other weekend, so I’ll have to file that carefully. I might need it.

I was liberated late in the afternoon and walked back down here in the heat and sunshine and doesn’t that make a pleasant change?

I cooked myself a meal of chick peas and the like with rice and had a chat with Lizand Rosemary on the internet. Now, I’m having a quiet relax before bedtime.

And in other news, I’m sure that you have noticed that yet another rat has deserted the sinking ship. It seems that the Brexit “Ship of Fools” is now drifting helplessly on the storm-tossed seas with no hand on the tiller. Not one of the leaders of the “Brexit” campaign has stayed to steer the ship. That’s because they all know what is awaiting them (Standard Life is the first financial institution to close down part of its UK operations as a result of the result) and they don’t want to have the catastrophe nailed on their doors.

It’s really quite funny to watch all the Brexit leaders running away.

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