Tube Strike !

No, not this Tube...

Tube Trouble again....

No, not that Tube, nor the NG tube which carries my nocturnal grub this time, but the tube inserted in my jugular vein via my right shoulder which is used every fortnight for the ECP treatment, taking blood out for exposure to UV light and then pumping it back in again.

Somehow on Friday night (why do these things always happen on a Friday night? at least it wasn't a Bank Holiday weekend this time) the stitch attaching this tube to my shoulder broke, and when I awoke on Saturday morning it became apparent that the tube had slipped from its previous position and there was therefore less of it still inserted in the vein. No blood or pain thankfully, but it did require another visit to St Thomas's on Saturday morning to have it checked out.
The X-ray revealed that only the very tip of the tube was still in the vein, so they taped it securely to my chest to prevent it moving any more and I will get it sorted (either pushed back in or, more likely, replaced) at my ECP review appointment with the consultant at St Thomas's, which as luck would have it is on Tuesday.

No excitement otherwise since my last posting just over a week ago.
And not much change either.
I'm still weak and wobbly and can't eat solid food, I'm still on the same cocktail of drugs, my eyes are still very poor and I'm still very itchy all over, varying from Moderately, through Seriously, to Incredibly.
However, looking back over the previous weeks and months, I can see General Improvement overall because I do feel slightly better and am capable of slightly more activity, but it is still imperceptibly slow going.

Condition Stable...
sorry, couldn't resist it!

But hey, it's 4 months since I was last discharged from hospital and my condition at least continues to be stable.

Sloppy, Slushy and Mushy

All these terms can aptly be applied not only to my search for suitable foods (see previous posting of 3rd Sept), but also to the state of my brain and of my emotions at the moment.

Food first.
Nothing new to report, I'm afraid.
I still haven't mustered the courage or enthusiasm to try anything other than ice cream yet, although Julia has thoughtfully bought a few possibilities. I know I must start, if only to take the first steps towards getting rid of this horrible tube up my nose, so maybe I will manage something this weekend. Pathetic lack of willpower, I know.

As for my brain, the combined effect of drugs and encephalitis have brought about some interesting(?) changes. My intellectual faculties, such as they ever were, seem relatively unimpaired. I think reasonably logically most of the time and can still do the Times crossword, but my Memory is all over the place. My long-term memory appears fairly intact, but I struggle to remember what I did yesterday or even a few hours ago, although if I am given a prompt, the appropriate image will suddenly spring into my mind.

I know nothing about the workings of the human memory, but it seems to me from recent experience that we retain a vast quantity of mental images and that the trick is managing the recall process. It's as if I have in my head a huge library of memories, but have lost many of the pages of the catalogue! So I can't find them when I want them and indeed have no idea that they're there until someone or something else presses the right button. This doesn't however explain why my long-term memory is more reliable and more easily accessed than the short-term, which remains a mystery. I can only assume that l-t and s-t memories are on different shelves in the library and that my mental librarian takes a while to catalogue the s-t ones and move them to the l-t shelves. Or it may simply be in many cases that I struggle to recall anything that's happened since the Transplant in Feb 2011 because I haven't been with it for much of that time.

And so to my Emotions.
Presumably as a result of going through what I have over the last 18 months, they are pretty raw at the moment, meaning that I find I have much more empathy for my fellow Human Beans than I used to, especially if they are suffering, and that I blub at the slightest provocation! The empathy is a Good Thing, I think. The blubbing is just embarrassing....













One side-effect of this emotional development is that I find I have a strong taste for soppy music and have been downloading a collection of my favourite ballads and Luuuurve songs.
To date this comprises the following (in no particular order):
Memory - Elaine Page
Killing Me Softly - Roberta Flack
Sorrow -David Bowie
San Francisco - Scott McKenzie
I want to know what love is - Foreigner
Always on my mind - Elvis Presley
Can you feel the love tonight - Elton John
The first time ever I saw your face - Roberta Flack
I can't help falling in love with you - Elvis Presley
Goodbye Yellow Brick Road - Elton John
My Lady D'Arbanville - Cat Stevens
Unchained Melody - The Righteous Brothers
Wonderful Tonight - Eric Clapton
I don't wanna talk about it - Rod Stewart
Without You - Harry Nilsson
Yesterday - The Beatles
Sailing - Rod Stewart
Morning has broken - Cat Stevens
You don't bring me flowers - Neil Diamond & Barbra Streisand

Mostly 70s I know, but that is My Era for pop music after all.
If any of you can suggest any Glaring Omissions in this collection, please let me know.
Blog it to me, baby!

Sleeping Sickness and Soldiering On

Well, no, I haven't actually got Sleeping Sickness (one of the few afflictions to have passed me by so far, it seems), but I am doing an awful lot of sleeping.



If I don't have to get up for any reason (usually a hospital visit) I quite happily sleep for anything between 12 and 15 hours a night. That's a lot of sleep for a gwown-up. Hope it's doing some good. But if it is, the effects are not obvious yet, which also goes for the ECP. No appreciable change in eyesight, dry mouth or overall itchiness this week unfortunately.

So what to do?
Well, what can one do except Soldier On in good old British fashion?


Oh, and Rant and Rave a bit. And Swear and Throw things. Not so British, that.
But the Frustration has to come out sometimes.

Two hospital visits last week:

Tuesday, unscheduled visit to A&E at St Thomas's to replace NG tube which became blocked on Monday evening and refused to soldier on. Can't be British then. Tube replacement is not a very enjoyable procedure and was performed this time by a junior doctor who hadn't done more than one or two before. Having removed the old one without mishap, he pushed the new one up my nose. Unfortunately it went down my windpipe instead of my oesophagus; cue lots of gasping for air and urgent hand signals by Yours Truly. However, the second attempt was successful, happily, and the noo toob now works fine.

Thursday: appointment at Guy's oral medicine department, at which the consultant made it clear that my saliva glands have been permanently damaged by the radiotherapy and chemotherapy I've had and are very unlikely to produce more saliva than they do now. So at least the message was clear, though not very welcome of course.

The question now is how to deal with it?
Unless I want to continue being fed by NG tube for the rest of my life, which I most certainly do NOT, I have no option but to try and find sources of nutrition which my poor dry mouth can cope with. This means eating Sloppy Stuff like ice cream, rice pudding and baby foods,

and definitely not dry things like bread or crisps which soak up what little saliva I do produce and form themselves into an unswallowable ball of dry paste in my mouth. So this week I will start experimenting with various foods to see what my mouth can tolerate and to try and construct a menu of suitable things which are both edible and provide enough nutritional value to allow me to end my dependency on the tube.

Julia had the week off work and had hoped to manage a few Outings with me as welcome relief for both of us, but what with hospital visits and marathon sleeping sessions, we didn't get out for pleasure at all. Poor Julia did manage a couple of evenings out with friends  and some daytime activities for herself, but it hardly constituted a Holiday, which she is in sore need of to ease the burden of drudgery involved in looking after her Ailing Husband.

And so we carry on soldiering on....

Eyes, mouth and skin

This week is a week without the usual hospital appointments since Monday is a Bank Holiday. Hooray!
And Julia has the week off work.
Double Hooray!

Everything was fine at the Monday clinic last week and I continue to take minuscule steps forward in terms of blood test results, which is at least better than going backwards. A lot better!

I also went to Sutton eye hospital, where I was prescribed a revised cocktail of eyedrops: less medicine, eg antibiotics, steroids etc, and more lubrication. Fine by me.
I was also fitted with 'bandage' contact lenses to try and keep the moisture in my eyes for longer and prevent them from drying out. These are not bandages (happily), but ordinary contact lenses with no prescription for altering focus. However, my experience with them was short and unsuccessful! On Thursday night one of them came out on the end of my finger as I was gently rubbing my eye and the other had disappeared completely. So on Friday, back we went to Sutton, where we saw a very friendly and no-nonsense sister who said she thought the lenses were probably not the answer, given the irritability of my eyes, and I would be better off just dropping in plenty of lubrication as and when needed. So that's what I'm doing now. My eye problem has not therefore been solved, but at least I can get temporary relief by piling in the drops throughout the day which enables me to see better than if I did nothing. The eyes are still sore and gritty most of the time, but I can see well enough to read crossword clues and short articles in the newspaper. We now have to hope that the ECP blood treatment, which continues fortnightly, starts to have a beneficial effect soon.

And the same goes for my mouth and skin, which are still very dry and itchy respectively. I continue to take drugs for both conditions (without any obvious effect) and apply cream to my skin more or less daily. ECP should make a difference here too in time. Inshallah.

Sometimes you just....

...HAVE to scratch!

And so Life drags on. I no longer feel quite as close to Death's Door as I have in the past (and I'm clearly not) but generally my Quality of Life is still poor, since I am constantly irritated both physically and mentally by these side-effects of GvHD on eyes, skin and mouth, and am also denied most of life's simple pleasures, such as eating, drinking, reading a book and going for a long walk. For the moment, I have to be content with the knowledge that my general condition is much better than it was and is still slowly moving in the right direction. Patience is required. In spades. And as we all know:
Patience is a Virtue,
Virtue is a Grace,
And Grace is a little girl who doesn't wash her face.

Thankfully I am also blessed with the physical, mental and spiritual support of a Gorgeous, Loving and very Long-suffering wife, without whom life would be very miserable indeed and I wouldn't have made it this far anyway. So perk up, Burrows, things could be a lot worse and tomorrow is another day......

Sore throat

Well, the Olympics.
What a show,eh?!
As Simon Barnes wrote in The Times: 'Did that really happen? Or did I dream it?'
And: 'My favourite moment of those 17 days? All of it. It's like a balloon; cut out a piece of it and you haven't got a balloon any more.'
And thanks to Julia (a. getting the tickets and b. pushing me all over the place in the wheelchair), I managed to get to 3 live sessions. Our final visit was an evening of athletics, but although there were no fewer than six medal events that evening, Team GB didn't land a single one, not even a bronze. A shame, but they did magnificently otherwise.

And how about me? A subject of Endless Fascination (yawn).
My mobility is still gradually improving, so the stairs are no longer as daunting an obstacle as they were, although I'm not quote mounting them at Olympic pace yet.
My vision is clearer too, though my eyes spend a lot of time smarting and stinging as if to complain at having to go back to work.
But my skin is still excruciatingly itchy, especially in hot weather and at night, which doesn't do wonders for the quality of my sleep.
And my mouth is still too dry to allow me to eat solid food, so I'm still getting my sustenance overnight through the NG tube.
All these things, and therefore my Quality of Life too, depend on the success of the ECP treatment for which I still make fortnightly trips to St Thomas's and will be for some months yet.

I often think of my Dad, who died at the age I am now, and it is impossible not to draw comparisons between his illness and mine.
He was a little under two months into his 57th year. I am just under three months into mine.
He had a lymphoma in a gland in his neck, a complaint closely related to CLL. Both are caused by malfunctioning lymphocytes.
Like me, his immune system had been knocked for six by drugs and disease, so what finally finished him was a streptococcus infection, or in other words a common-or-garden sore throat.

So I was more alarmed than I might otherwise have been when I woke up a few mornings ago with a sore throat. The GP responded promptly to my call and when he came to see me, happily advised me that there was no sign of any infection and the most likely cause of soreness was irritation from the NG tube. This rang true because I always have difficulty swallowing the few pills I take (most of my medicine is liquid) and they sometimes get lodged between tube and throat lining, which is very uncomfortable until they eventually dissolve and is probably the source of the irritation.

So a False Alarm then.
But it does reveal something about my state of mind.
Call me a Drama Queen, but this bloody malaise has gone on for so long now and the outcome is still so far from certain that I find it impossible to ignore the prospect of an unhappy conclusion.
And on this subject, there was another strange coincidence this week when the blogsite of my old school and university friend Richard Pemberton popped up on my iPad unbidden.
Richard died of cancer earlier this year.
Spooky, huh?!
But not an Omen, I trust.
Maybe he's just looking after me...

Good days and Bad days

Good days, Bad days.

Well, that's life, innit?!

You win some, you lose some.

And other appropriate cliches.

 

Happily at the moment the Good days are much more frequent than the Bad ones and included another outing to the Olympics to watch athletics on Wednesday. No finals or medals, but a great atmosphere and lots of cheering and flag-waving nonetheless.

But Tuesday this week was a Bad day, principally because my NG tube, through which I take all my food and medicine, went on strike late on Monday evening and refused to allow anything to pass up or down it. And of course it was at too late an hour for anyone to come and sort it out for me. I tried pulling, I tried pushing (through a syringe, that is). I tried cold water, warm water and fizzy water. All to no avail. So I had to take my evening medication orally (which at least proved that I could manage it if absolutely necessary) and forgo my usual overnight feed entirely.

 

Hence on Tuesday morning I felt even more feak and weeble than usual, and no doubt prompted by the unexpected change in my feeding routine, Montezuma took his Revenge suddenly and unpleasantly. I summoned the strength to make a few calls to various health professionals for assistance, but happily on Tuesday afternoon, just as I was bracing myself for a visit to A&E at St Thomas's to have the tube replaced (not a particularly enjoyable experience) the current tube declared itself open for business again. So at least the story had a happy ending. I felt much better on Wednesday and Montezuma has withdrawn his attentions again now, so my bowels appear to be back to normal too, thankfully.

 

And just to prove that Life does have a sense of humour, you might like to note the Irony in the name of the unfortunate competitor in the screenshot below who failed to finish her hurdles race in the Olympics. With thanks to my nephew Gulliver for spotting it.

 

 

 

A Busy Week

Over a week since my last update, so high time for another one.

 

And what quickly became apparent while composing this message is how Truly Awful my short-term memory has become. Thanks to a combination of past infections and my continuing drug regime, I could remember very little of what I'd been doing last week and had to ask Julia!  Happily, when reminded of specific events or activities, I did at least manage to dredge up a mental image of each one, so there's clearly something still there in my memory, but the retrieval system is completely messed up. Very frustrating and annoying, particularly because we normally take it so much for granted. If I'm to be able to recall what I've been doing (without asking the long-suffering Julia all the time) I shall have to keep a daily diary. If not hourly.

 

So what HAVE I been doing?!

Well, quite a bit actually, which is a useful indication of continuing recovery.

 

Last Friday after my morning dose of ECP at St Thomas's (see entry for 2nd July if you can't remember what ECP is) we watched the Olympic torch sail past on the very handsome royal barge Gloriana from the riverside terrace at the hospital.

Then on Saturday we spent practically the whole day out at our friends Sue and Steve's, the entertainment including prime position for watching the men's cycling road race whizzing literally past their front door. Blink and you missed it, but we had a great close-up view. We travelled to S&S's by train, something I haven't attempted for 18 months, so that was a notable milestone too.

 

And Sunday was Julia's birthday, so we were out again, though a much shorter trip this time, having a quiet potter round the Chelsea Physic Garden just the other side of the river from us,

and the oldest garden in Europe, having been laid out in 1673, and a calm haven in the centre of London in which to spend a restful hour or two.

 

 

Then most of Monday was spent at the Marsden clinic as usual, so I've packed more into the last 3 days than I've done in the last 3 months. And all after my fortnightly double dose of ECP too.  Tiring? Yes, but no other ill effects so far.

Tomorrow (Thursday) will test my fitness again because we have tickets to the Olympic rowing at Eton Dorney which calls for rather an early start since the sporting action starts at 0930 and we need to be there two hours before that apparently, so we'll have to get up at Sparrowfart.

Bring it on!

 

As for the Medical News, apart from the memory and ECP already mentioned, my overall condition is still gradually improving, so I am a little stronger, more mobile and more with-it mentally than this time last week. The blood test results this week also showed a marked improvement in my liver which is particularly encouraging because that should help clean up the residue of previous infections and prevent any new ones from arising.

 

There are still plenty of physical issues that need resolving, the most irritating being dry eyes and mouth and constant itching, because they have such a significant effect on my Quality of Life, but none of them is life-threatening and the combination of ECP, drugs and liver improvement should start to make a difference soon.

Inshallah, as ever.