T + 502. A twatting we shall go.

Good second photo-pheresis session at Guys on Friday, a total of 1 hr 20 mins start to finish -  fastest ever. I have a correction to make on previous blog entries. I didn't know what the full name and acronyms were for photo-pheresis so - I made one up (PPI). The actual full name is Extra-Corporeal Photo-Pheresis (ECP), and is derived from the Albanian meaning 'Big Fuck Off Needles'. No - obviously I jest - a quick butchers at google suggests it means something like 'Out of body light withdrawal' it's a bit like how they name plants - a mish-mosh of Latin and Greek combined to make sure it sounds poncy enough so that we plebs realise it's all clever and SCIENCE.

I had to reschedule Thursday's ECP session as Milo was a bit rough with a bad cough and cold so I kept him home from school for the day - he was only due to do a half day anyway as his school has broken up for the summer now. We (me, Milo and Wellington) went for an hours walk around one of our local footpaths through the fields really beautiful this time of year (actually any time of year)  - I had to find Milo the obligatory 'whacking stick' to carry for thrashing at the grass and anything else in his path. It's a bit of an ordeal because he's not exactly ninja as far as stick craft goes, so there's quite a lot of friendly fire and self inflicted wounds going on.

At the halfway point near the 'Witches Cottage'

Every 5 minutes or so I hear an 'Ow,ow,ow Daddy!'
I say 'What?'
He says 'I hurt my leg with my stick'
I say 'Well throw it away then'
He says 'No - I need it for my broken leg'

So the whacking stick becomes a makeshift walking stick until the leg has healed, then it's as you were for a further 5 minutes until he twats himself around the head or catches me one in the back and the whole rigmarole starts all over again. We sneaked past the Witches Cottage to ensure that she didn't come out and grab us - because apparently not only would we be turned into frogs if caught, but we'd also end up in the giant cooking pot. I asked why she'd need a giant cooking pot if we'd been shrunk to the size of frogs - and was given the kind of look I imagine Nigel Farage would have got on the Balcombe fracking frontline.  We also stopped in one of the fields to watch a tractor lay an egg (baling). Milo's Grandma came down about 11 am and took him on the train down to Hastings for a bit of R'n'R and I'm advised a lovely time was had by all.

Nearly home - Wellington is looking for a likely spot for a nice crap in the Churchyard.

At Guys on Friday I was on a machine next to a fellow patient in their late 20's or early 30's and sadly only got talking to them for the last 15 minutes or so as I'd had my ipod on which was a shame. This person was transplanted at the end of 2012, a couple of months before me and since that time had only spent a total of only 7 weeks out of hospital. They've had severe GVHD in virtually every major organ as well as bacterial and fungal infections, one of which has eaten away the inside of their nasal cavity. Quite inspirational - still a very upbeat and chatty person even though very frail and unable to walk unaided and pretty much wheelchair bound at the moment. We compared meds and horror stories (as you do) and had a really good chat - I hope to get the opportunity to meet them again.

I realise now that I needed to meet this person and hear their story to give me a shot of reality and perspective on where I am now and how fortunate I have been. I was ape-shit stir crazy and moaning after spells of 7 and 3 weeks in hospital - let alone 14 months. Red eyes, fatigue and a sore mouth now seem like a small price to pay when compared to the options of a) forgoing a transplant - ie a slow and debilitating fade, or
b) experiencing true full-blown chronic GVHD in which the body crashes from one crisis to the next in a spiral of diminishing returns.

The fact that I'm up and about and contemplating moving on with life is a million miles away from the experience of some other BMT recipients and my heart goes out to them all - having travelled the rocky road of the transplant only to find the next stage even tougher - well I can only say that it's bastard unfair that shit deals like this should happen to such brave people.