Back In Hospital - But Every Cloud...

You're probably fed up with me writing about being in hospital.
Not, I can guarantee you, as fed up as I am being in hospital.
Fourth time this year.
If you follow this blog, you will know that I have had a Bone Marrow Transplant.
That happened in May.
The reason it happened is because, in January, I had the most awful tumour on my foot - I have a thing called Cutaneous T Cell Lymphoma - and a rare version of it at that - and it was decided, by me, on advice that the transplant was the way to go.
So that was on May 14.
And it was, more or less a breeze.
Now, when you have a serious medical procedure and it is 'more or less a breeze' you should look in the mirror, tell you're self you're a fool and get yourself ready.

Because if it's a breeze it either a) hasn't worked or b) the hurricane is on the way.
And the hurricane was on the way.
100 days after the transplant, I received a thing called DLI - Donor Lymphocyte Infusion. That's when part of the donor's blood is put directly into mine.
The purpose is, partly, to provoke a little bit of rejection. Which it did. Because a little bit of rejection means that the new bone marrow will begin the battle against the old and, hopefully win.
The battle is still raging.
But on top of that, my little daughter Charlotte got the vomiting bug, a 48 hour thing.
And brains trust here decided the best place for her, was in the bed beside me.
That's despite being told to avoid crowded places in case anyone in the crowd has a cold or anything else I might pick up, me with my immune system less mature than my two-year-olds'.
So crowds, I avoided, but the two year old with the bug, I pulled close beside me to comfort her.
And I got her bug.
Hers cleared up in 48 hours, as 48 hour bugs have a tendency to do.
Mine is with me three weeks so far and being viral, has every chance of extending its stay for another three or four.
My doctor doesn't get angry at me often.
But on this occasion, she was seething.
You see, I think she was operating under the illusion that I had a brain.
So here I am, stuck in hospital. Again.
And if there's one good thing about it, it's this.
I have no appetite.
And so I'm not eating the food.
Every cloud, they say...

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I'm Not Actually Dead

This short post is really to apologise for not posting for some time - and to let anyone who thinks I'm dead that I'm not.
Bone Marrow Transplants and daily blogs don't mix.
The problem is, that a BMT (as we veterans of the procedure like to call them) leaves you absolutely jaded. Fatigued. Tired beyond belief.
You don't have the energy to pick up the lap-top, let alone write a blog. Indeed, the process of deciding you're too tired to write a blog is so tiring that the question doesn't arise.
Things are a little better now that I'm three months on.
I have been extremely lucky in that I have simply been tired, not ill.
I am, however, receiving some other component of my donor's blood next week. And my doctor tells me that there's a pretty reasonable chance I'll be sick after it. Not immediately, about ten days later.
Terrible really. Before the BMT I was better than I'd been for years.
And of course, after it I was worse.
Now, I'm getting better again - and in a week or two, I'll be worse again.
Why is it that all the drugs that cure nasty diseases like cancer, are tough drugs, drugs that make you sick and lose your hair and feel lousy?
Why doesn't cannabis cure cancer? Why isn't LSD a cure for lymphoma?
I mean, it's bad enough having these damned diseases.
You think, at least, we'd be allowed to have some fun as we're getting better.

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I Have to Admit It's Getting Better

Well, I’m sorry I’ve been missing for a little while.
I could tell you that I feel so low, now that Ireland has become a poor country again, that I didn’t have the will to write a blog.
But that wouldn’t be the truth.
I could tell you that we are now so poor that I was out collecting sticks to make a fire to heat us all.
But that wouldn’t be the truth. Even though it could be.
I could tell you that I was hunting rabbits for us to eat.
But that wouldn’t be true. Though it’s likely to be in the not too distant future.

Fact is, that after all the medical treatment I’ve been having, I was plum knackered.
That’s the problem with things like Bone Marrow Transplants. No matter how often they tell you, beforehand, that you’ll be knackered afterwards, you don’t really get the idea HOW knackered until, well, afterwards.
It’s a strange business. Like many, if not most, medical procedures, it’s actually worse than the disease it’s setting out to cure.
I went into my transplant with fear and dread. Even saw the shrink before I went in, such was the mess in my head.
And I was aware that, last time I was in hospital, I did all but tunnel out.
So it was odd, that once I walked in the door of St James’s Hospital in Dublin, my mind was at ease. Completely. I checked into my room, made sure I had pictures of my loved ones beside the bed, checked that the telly was working, my laptop could access the internet (thank God for dongles, the hospital is still in the last century when it comes to providing broadband for patients) and my iPod was functioning.
What they do for the BMT is blast you with chemo to kill of your marrow and then, in a kind of transfusion, give you someone else’s.
And it’s a bit unpleasant.
Although I think our health service is an inequitable shambles, although I believe it is run by people I wouldn’t let run a children’s party, although I believe it is over administered beyond belief, and although I believe nobody in the upper echelons of the Health Service Executive gives a toss for those currently in need of the service - they have their eyes focussed firmly on ten years hence - the people who work the front line are unbelievable.
Doctors, nurses, catering, cleaners - chaplains in particular. They are fantastic people utterly undervalued by their employers.
They make hospital bearable. Even if the food is dire, the people giving it too you make it almost edible.
They are to a man and woman, fantastic.
And let me say this now. I will never know who donated bone marrow for me. Never. Dem’s the rules.
But it is one of the most altruistic things a human being can do. There is no money it. You don’t even get to find out if it worked. You never get to see the results of your sacrifice. Which makes it a sacrifice in the true sense.
Anyway, I was sick for a while. And now I’m tired.
But things appear to be going reasonably well. The doctors are happy.
If there are little blips, doctors say “don’t worry.” Even they must know that whenever someone with a nasty disease - mine is lymphoma by the way - is told not to worry, that is precisely what they do.
So I’m trying not to worry. Trying to do bits and bobs. I find the bobs more tiring than the bits.
But I must be in better form. I’m complaining as much as I ever did. I’m complaining about the weather, politicians, the wanton destruction of our heritage in Tara, motorists, pedestrians, cyclists - I think that just about covers everybody.
I’m in the sad situation of knowing more about Coronation Street than any other 54 year old male on the planet.
I sleep like a log and wake up jaded.
I have no feckin’ appetite even when I’m hungry.
See?
Complaining again.
It must have worked.

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It's Going To Be Some Year....

2008 has arrived at last.
I was waiting for it with some excitement and not a little fear.
Because, one way or the other, it's going to be a big, big year for me.
Sometime in the next 12 months, hopefully in the next three or four, I will have a Bone Marrow Transplant.
If it works, I will have the chance to resume a normal life.
If it doesn't, well, if it doesn't it could mean no change.
Or no life.
Obviously, I've asked a lot of questions about this treatment. It's astonishing, really, that medical science has actually come up with a blunderbus to fight certain cancers. As one of my doctors said; 'We have very few golden bullets."
So they kill all the cells. Good and bad.
And that makes the transplantee very, very sick. It means living in an isolation room for weeks. It means not seeing my little daughter Charlotte for six to eight weeks. That will be one of the hardest parts of all.
It means six to twelve months of not feeling very well.
But it could mean a new life.

I hate hospitals. i don't if it's because I have spent so much time in them or if it's just a kind of phobia.
So deciding to do this hasn't been easy.
But one thing made the decision easy.
Charlotte.
Anything that will allow me to spend more time with her, is worth it.
There is, of course, a problem with finding out as much as you can about something like this.
All of what you discover, isn't good.
There are sad stories, stories about people suffering a great deal. There are tragedies.
But I try as hard as I can to concentrate on the stories of hope and the stories of people given back their lives.
Next week, I see my doc and tell her to start making the arrangements.
Although they harvested healthy bone marrow from me some years ago, they will, in the first instance, see if they can find a donor.
That raises the possibility of Graft versus Host disease which can be bad.
But if it all goes to plan, the results could and should be excellent.
Eight weeks without holding my daughter. Eight weeks without a kiss from her.
And even when I see Connie, she will be wearing a surgical mask.
They tell me'll I'll be too sick to care, which, in a perverse kind of way, is good news I suppose.
I hope to keep up the blog while I undergo the transplant and in the subsequent months.
So if you have a mind which is interested in things medical, this is the place for you.
I'm going to need some courage.
And your prayers please.

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