Ready or not, here comes a thought

Broadband is still playing up but I have remembered that I actually have a internet dongle for such times so I'm now using it.

So where were we?

That's right it is early 2002 and I've really just started the photopheresis treatment to treat the GvHD which is attacking my organs, especially the skin. Like all apheresis procedures, where they take some of your blood out and spin it till they get the layer they want, it is a time consuming affair. Generally from start to finish it takes about four hours. It's also a very tiring affair. I always left the sessions exhausted, but I suppose that's only natural when for sections of the day a decent amount of your blood is actually outwith your body.

While there were lots of films and things in the apheresis unit to keep you occupied for the time you're hooked up to the machines, that's only really helpful if you can stay upright to watch them. Because I'm a slight wee thing having some of my blood out of my body sometimes led to me feeling a bit flakey so the only thing I got to see was the polystyrene tiles of the ceiling. The other thing that was almost always true of these sessions were that I would feel pretty cold. Most of the time I just slept through the whole affair though. On a few days where I was wide awake for it I took my laptop with me so I could try and write about the whole bone marrow transplant experience. It was much easier having access to my medical notes to see if my memory was in any way related to what the doctors had noted about the treatment. I got a fair bit of enjoyment out of doing that and those who have read it have told me they enjoyed it greatly. Having written about it at the time has made writing this blog a lot easier as well as I have lots to refer back to. It was never organised enough to put it into any sort of book but I still read bits of it as a reminder to myself of how harsh things were and how lucky I was to still be around to write it.

Just when I was coming to the end of the course of photopheresis treatments I was asked by the staff at the apheresis unit if I could come to one of their education days and speak to the assorted medics about what it is like to be on the receiving end of one of their treatments. I was thrilled to have the chance to do that and it was just the sort of thing I needed at that time to keep me busy.

I was well enough that I could actually feel bored but not well enough to get my 'normal' life kickstarted again so a little project like that suited me perfectly. I also just like doing presentations and what better a subject to talk about than yourself. So I prepared a slideshow and gave a talk about how those treatments make you feel and that sparked a discussion about how the whole process can be made more comfortable for the patient. The whole thing was a great success and the next time I went in for my own treatment one of the nurses who run and monitor everything told me one of the delegates was quite taken with me and was thinking of asking me out. I asked what her name was and Diane replied 'Stephen'.

So, not exactly my type then.

Back then it was usually my sister Clare who took me to most of my appointments, although as I was getting better I would sometimes go in to Glasgow on the bus. The word enjoyed isn't right when talking about any of this but I get the feeling that she appreciated being there with me at most of the appointments. I have never taken a relative in to the consultations with me even though all the books tell you it's a good thing to do. I'm happy having someone come with me but they don't need to hear all the stuff that goes with all of this. I've always just felt happier at being able to pass only what information I want out to everyone. I think when so little of my life was under my own direct control this was my way of at least being able to keep one aspect of it just mine.