I was discharged from UCLH at 17.00 hours. It was sobering, I received excellent care, but the psychological impact of being in the tower was quite significant. I have an incurable cancer, it’s quite likely that at some point in the future (hopefully many, many years into the future, possibly never), I’ll die here.
Leaving the Haemo ward I was stopped by a patient at the lifts who asked if I was off, he was also hooked to a drip on a portable stand and had obviously been off for a toddle about the wards for some exercise. I was I replied. “Do you know anything about stem cell transplants?” he asked, before going on to explain that he had leukaemia, it had relapsed and he was in preparation for a donor transplant. Now all this sounds very innocuous and it’s the kind of routine conversation that you’ll find between any cancer patient anywhere. I replied that I believed that stem cell transplants for leukaemia were to all accounts practically a cure.
I should at this stage mention a few odd things about the person I was talking to, I noticed that hovering a few feet away from him was a policeman, he was also accompanied by a lanky friend. There was a strong smell of beer and cigarettes. He spoke quickly and in an overexcited way. My inner urban danger detector went off the scale….
“What’s the matter with you” he asked, I told him I had myeloma and was due a stem cell transplant too. His lanky friend at this point chipped in, “myeloma’s incurable even with a stem cell transplant”, which is true. At this stage my new friend said “oh you’re going to die then”, before turning round and continuing down the corridor. The policeman shook his head and followed after him, with his lanky friend. It wasn’t quite the departure I would have planned for, and in fact totally freaked me out compounding my fragile mood.
Here’s the data:
For detailed description of parameters see the Data Methods part of this website
Stoicism: I don’t want to talk about it: 1
Mood: very low ≈ 2
Control: No control at all = 1
Discomfort: moderate = 4
blood and bones 
Comments
That’s more than an extreme version of “How are you?” It’s a whole other issue – dealing with the crass, and (in this case I reckon) mentally unstable. Never much fun though.
I hadn’t seen your site before (do you consider it a blog?!) I like it. I agree there’s an issue, with so many disease blogs, that they are in danger of being all the same – a diary. I try to lift Dial M out of that a little by (a) keeping it tight on the impact of myeloma and (b) being shockingly frank. And I exposed data a little by posting my blood counts all through my SCT. Though I don’t think I fancy keeping a daily mood score, myself.
But I love your take on the use of patient data. There’s so much that could be done with scores as a basis for art. Maybe we should go Dice Man and use test results as a proxy to make other decisions. If my Hb is over 11.5 next time, should I buy a new bike?
Thanks for commenting Alex, I think he certainly had issues and I’m pretty sure he was ‘on release’ from somewhere. You had to be there to really appreciate the full impact, he was definitely pushing for a response or reaction. Bizarre and ever so slightly sad.
B&B isn’t really a blog, it was a project I started to stop myself going insane, I consider it to be in a data collection stage at the moment, and I’m not really sure where it’ll end up. I’ve done a lot of art-science collaborations with scientists so hope this will provide a platform for something along those lines at some point.
I badly need to update the medical data as I’ve produced tonnes of the stuff the last month but been too busy with treatment schedules to follow it up.
I’m all for dice man, and yes, buy the bike you deserve it.