That’s One Thing Out of the Window..

So – ended up seeing Steve Schuy – not 'Sky', though that would have been a lot cooler – a consultant haematologist, on Mon this week. In some grotty bit of the London Bridge Hospital. Which is right by Added Value's London office on Tooley Street though I've never noticed it, it's amazing how a whole world of other stuff can be going on right under your nose, but you don't know about it until you get sucked into it yourself. On that basis, I wouldn't be surprised if sure all our neighbours here in sunny Wimbledon Park are swinging but (thank god) our invite must have gone astray in the post.

So – what did he say? Well, it was a whole lot more negative than I thought, which has made the decision a bit of a no-brainer. With the advent of new and better drugs, they are doing fewer Mini Allos these days then before – and there weren't many done before. He said there are only 4-5 a year done in Europe on Myeloma – now that is pretty tiny – although its more common in Leukemia apparently.

And the numbers are pretty terrible – actually a 50% chance of dying in year one even from the mini allo. So – weighing that up vs the alternatives means the mini allo is off the list for now. Which is a great relief in some ways as its a pretty scary option, but a bit disappointing in other ways as its the main 'great white hope' for survival gone up in smoke.

So – what I'm thinking now is that its best to wait and see how long a remission I get from this Stem Cell Transplant (SCT) as that will help me make better decisions going forward. Its possible to have 2-3 SCTs but you get a shorter remission each time, so obviously the best is to get more than the median (of 2 years) and repeat it three times…. better than nothing, not as good as being able to live to a ripe old age, wearing purple and swearing (oh dear – I think I do this already!)

If I get a crap remission from this one, then maybe the Donor option comes back on the table – I think they only offer them up to 45 years old, and I haven't even been typed yet to see if there would be a possible donor.. but best to keep everything crossed for a long remission (some people have to get more than 2 years and I'd like to join that group please).

And at least things are going well on the health front – paraprotein is gradually coming down still the score yesterday was 2 – which can be seen as a good thing, coming down slowly may be seen to equate to it then going back up slowly rather than shooting off up again like a rocket. Though I also have to keep remindoing myself that I am already 4 months into the remission period, so need to crack on and do everything 'on my list' as soon as possible. Which is quite a pressured way of living – especially if you saw 'the list'!

So – off to do the family thing in Holland this weekend, then off on annual hockey tour to Le Touquet at end of May – which is Hawksey's & my 2 year anniversary, would you Adam and Eve it. And the US for some cocktails, canyons and overt consumption in July, then hopefully Sri Lanka in September. Have to catch up with that naughty Mikey Martin who keeps going on 'my' holidays before I get a chance to do them – Sri Lanka last year and now he's planning to go swim with manatees in Florida.. that's MY holiday, get off my land, Monkeyness!!! Maybe we can do that at Xmas. If Mikey doesn't eat them / scare them all off in the meantime with his manly chest rug and snorkel.

And for now I just need to shake off this bloody lung infection which has me coughing and hacking like a cross between an emphysaemic and a grumpy sealion. Am going to see Hairspray tonight (well, I didn't know I was going to be ill and it is for the lovely Helen 'Fruity' Vickery's 40th birthday) so here's hoping I don't get thrown out for hawking my guts up. Nice eh??

S x