Scary stuff..

And just as I was settling back into work and home, thinking gosh its nice to feel this good…. the bubble bursts. Nothing wrong as yet with my paraprotein scores (next Prof visit is next Wed so will find out latest then), but Prof has asked me to go and speak to a chap called Steve Sky at Kings Hospital London about the dreaded 'mini allo'- my donor stem cell transplant.

What's a mini allo? Well, its a lesser form of the 'maxi allo'- actually its real name is a non-myoablative (mini) allogeneic transplant, so-called as you get a lower dose of chemo and fewer donor stem cells than in the full-on version, which virtually no-one carries out these days due to some fairly hefty drawbacks with the technique.A 'maxi' one is the only way to possibly (no guarantees as ever) be 'cured' of MM (ie you still hjave it, but it doesn;t kill you) – but over 50% die in the process and there's only a slimmish chance for the remaining 50% that the disease does not return, so its not often done.

Hence the growth in popularity for the mini version – and I am shitting myself about it already. I'll find out more next week when I see Steve Sky but I was hoping that I wouldn;t even have to be starting these conversations for a year or so yet, so its a bit of a pisser and a slap in the chops to be getting the ball rolling already.

As I understand it so farthe choices are to either:

i) Wait until the stem cell transplant (that I had in Jan) fails and have some more chemo to bring it under control, then have the mini allo. Upside: More time feeling good right now and maybe the SCT will last for more than the average two years so I could have a fair old whack of time feeling pretty good. Downside: Body is weaker due to the extra drugs to treat the higher level of paraprotein, therefore Allo less likely to work, and odds of success also reduced the older you are (even a year or two counts)

ii) Crack on with the mini allo this year: Upside: The opposite of above – more likely to work and downside: hmmm. not the best…..The downside is all about the fatality rate. Don't read this bit unless you've got a decent cup of tea or something stronger at hand. From everything I know so far, the mortality rate is between 25-50% for Mini Allo patients within the first year after tranplantation. Why? Because of something called GvHD – Graft vs Host Disease whereby your body rejects the donor stem cells and, because they're everywhere in your body, you can't take them out and try some better matched ones, instead they attack key organs and things like your liver will fail, killing you. So – not the greatest prospect.

I'm hoping that Steve will recommend that I don't do it until my current SCT fails (but I think the latest thinking is to do it sooner rather than later, in what they call a Tandem Transplant process, ie do the donor one once the patient has recovered from the stem cell transplant). I'm also (clearly!!!) hoping that he will say my odds are closer to the 20% mark in terms of croaking, rather than 50%. Still not great – imagine say 4 people you know in front of you and that one of them will die within a year… yes, its not great when it's someone else, and a fuck of a lot crappier when you yourself are one of the people in the line up. It set me off thinking about whether I am a lucky person and therefore whether I'd fall on the right side of the line or not.

Amazing how your mind can chew overeverything to try and guess (as if it were possible) what your odds are. So – I had the rafting accident a few years back and nearly died – does that make me unlucky that I had it, or lucky that I lived? And if I lived through that one, does it make me more or less likely to get through this one? God only knows…. wish there was some way of making the decision easier and the outcome more positive. Guess we'll have to see what the man says next Wed.

Not looking forward to seeing Kings – I've heard pretty bad things about its terrible location and grotty feel compared to Parkside. It feels like being asked to go temp at another company when there's not enough business at your own – it makes logical sense (as I think Kings does the most Allos in the UK) but you feel really dislocated and out of sorts just at a time when you want to feel looked after, safe and secure. And it won't be half as handy for people to pop into as Parkside! Still, that's the least of my worries right now..<

Arse…. worry, worry, bloody worry. Funnily enough, can't think of anythign else – its dancing in front of my eyes all day long. Still – we'll see what next Wed brings. Will let you know. Cheers S