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.