Haemoglobin 107
White Blood Cells 2.9
Platelets 47
Neutrophils 3.23
Weight 63kg
The blog site view counter passed 8050 views in the night which came as a surprise as it was only ever started to keep 20 or so family and friends in the picture re the original treatment. In the 13/14 months since transplant and then starting the blog and the 68 months since diagnosis I realize I once carried a very short-termist outlook in my attitude to MDS in the early days and would quite naturally forget I had it - until fatigue kicked in and the dashboard lights started flickering. I was able to work for a further 41 months whilst commuting between Battle and London - roughly four hours travel a day and twelve overall.
I had very much convinced myself that by keeping fit, doing weights, supplements and pushing my body to be in the best condition possible that I would ace the whole situation - especially when my sister was found to be such a great donor match and although there were nearly four and a half years between diagnosis and transplant, ridiculously now, I can remember wishing that things would accelerate so that I could get to the BMT stage faster. This I can now freely admit is absolutely moronic as it distracted me from living a perfectly good present.
Depending on age going in, health, the obvious advances in medical technique and I think just dumb shit luck many more people now achieve recovery/remission - but none of this is reason to wish away your time pre BMT the life change package is wholesale believe me and not just for a week or a month after chemo.
Now something quite rum happened to me earlier today so read on and cheer up.
This morning I had to go over to another section in the hospital to have some pictures done of the GVHD ulcers on the inside of my mouth. They'll be used for comparative illustration purposes in case they come back and/or worsen and also -when anonymised, will be used for training materials by the students in the dental college as although ORAL GVHD isn't rare in BMT recovery, the whole BMT thing is rare and specialised enough in and of itself to be of interest.
Failing that the HGV drivers in France are welcome to use them to scare the Albanians out of the backs of their trucks.
At my ward I insisted that I could walk perfectly well and would welcome the exercise, but you have to be wheeled everywhere around the here by a porter. Anyroad we eventually found the lab in the basement of a building across from my ward block and at least I got to go out in the sun. It's weird how quickly you can get used to being outside in daytime in your pyjamas, - I like to pretend to catch and eat the odd imaginary fly just to keep the rest of the punters at a distance - this is South London after all.
The porter took me to wait for my turn to be photographed - there was one other lady in the waiting area.
He knocked on the door;
"Got Mr Storey for you here"
The door peeled back and a woman of about thirty emerged looking unnerved .
"Nicholas Storey?" she said - distractedly.
Porter "Yep - here" nods down to indicate me.
Oy oy I thought - news travels fast.
"But he's already here being photographed!"
This sounded like fun.
Me - "Really - can I see him?"
The porter looked askance at me - I could see he was wondering what sort of ward he'd just collected me from.
We all turned (including the other lady) and craned our heads across the corridor to the door the receptionist was indicating. She walked across the corridor and swung the open the door talking animatedly as she entered, - the rest of us shuffled over to have a look in and, sitting in a wheel chair, was a tiny wizened old man wearing thick glasses, huge owlish, blinking dark pupils, completely bald apart from a couple of white patches behind each ear. He really was a very old and his head looked like a baby bird's. Lordy.
This image wasn't at all helped by the fact that he was gimped up holding a couple of clear plastic retractors to his lips to pull his mouth open as wide as possible so that the photographer could get snaps inside his mouth. He clearly did not have a Scooby why (but like all of us in hospital obviously had faith that someone did).
"Hello Nick" I said and gave him a wave. The door closed - hard- and we trooped across the narrow corridor to the waiting area. The porter was bleeped and headed off double quick still not entirely sure who was who. I feel a little embarrassed to say now that I dissolved into wet sniggers when it dawned on me that on top of it all, the guy had been Indian or East Asian. What the bloody hell was his name Nikram Storesh? Nikesh Staru the mistake was just too bizarre. Turns out not at all. Even though in-patients are barcoded and QR'd up to the chin this was just one of those instances where they were expecting a guy at 0930 for mouth shots- were given a guy at 0930 and so gave him mouth shots - a rare mistake- but for me just the cheering up I needed. I really thought I was going to meet a noble alter ego or the non evil twin.
He was out 10 minutes later having had (I think) his swollen wrists, ankles and manky nails documented for posterity. We had a sweet and gentle chat while I was waiting for my turn and I showed him how to flash his QR patch for the barcode readers so they'd know it was him. Looked fuck all like me though. Very polite old school chap - lovely.
My shots were done in the next 20 minutes and I got to have a go with the mouth calipers and the gimping
(I think she gave a new set) so I left him there waiting for his porter and took a slow walk back to the ward via the sunshine and the shop. Where I filled up on more crap food. I have definitely developed a weird food streak since being back in here, with more mouth ulceration you would think that prawn cocktail or super ridgy steak crisps might be to be avoided but I crave the acidic salty little bastards no end and sit here in floods of tears coaxing them down. Pure masochism.
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