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......