Hawksey & I went this Sat to the annual Myeloma Infoday, organised by Myeloma UK, the main charidee for my poxy disease. Was really well run and incredibly handy to be able to ask any medical question at all to a panel of experts – and actually get a reply (not quite what tends to happen with Prof!)
Got some very interesting different answers to some questions, all of which throws up even more questions about what might lie ahead, and how best to tackle it.
And reminders about how weird the whole treatment phase was, taking Thalidomide among the other stuff - something that seems like poison and danger to any normal folks but was and is the mainstay of MM treatment… funny how I just guzzled those tabs down (slowly), seems odd to think now that Thalidomide is a saviour in MM when its a disaster for woman of my age usually.
Also met 8 of the 40 bods in the Under 50 Group that I've kind of founded, with various other poor suckers who have MM, which was really good to do. Ranging from a N.Ireland couple of dentist/hygienists to south coast peeps, to Phil from Oxford, the very nice Penny Lane (yes, real name!)… bloody good bunch of people, none of whom deserve the shit that MM brings. All had lunch together during the day then nipped for the infamous 'just a quick drink' afterwards – resulting in me & H crawling home around 11ish, bladdered.
One very interesting one is Ceri – same age as me and had a donor transplant 18 months ago. Luckily for her, she had a sibling match so while its still a hugely dangerous process, its slightly less risky with a family member's cells. Like most people she's had many bouts of the infamous 'Graft vs Host' disease (GVH).. which might as well be GBH for the crapola harm it inflicts. Its hit her in the lungs (so she can't talk and walk at the same time and is always breathless), plus has had multiple bouts of pneumonia, and has affected her skin, so she's pretty brown and blotchy. Is also very thin but – is still here after 18 months which is a damn fine effort.
It has just brought it all home to me again what total shit, sadly, lies ahead. I've managed to get myself into a pretty good headspace of late which went totally up the spout last night, with visions of white-coated docs pinning me down as they inject doses of toxic donor stem cells into my neck… as if you're on Death Row and getting a final lethal injection. Not imminent right now as a prospect but always on the horizon, taunting you to say 'don't get too comfortable with how well things are going now… its all going to go wrong and the only question is when, not if'. Arse bugger bollocks.
But still, overall definitely worth going, even if you could pretty much smell the fear in the room. Most of it mine! S