Thursday, December 12, 2013

Blog 20 – Helter Skelter

Helter Skelter* – Beatles white album

I was feeling hopeful in the last blog – and I know I was right to be – but then I got sick. Very sick.  I lost another half a stone – so now down to 10st 8lb a full 3 stone down from when this began in June to a weight I last knew back in 1975 – have a hunt for a pretty cool former Facebook profile photo. The sickness was probably a virus and took hold in a number of ways. First it gave me a temperature – sweating, shivering, listless – although the thermometer said I lied at 36.4c. Second it took away appetite. And this, together with the Third – it made everything smell like burnt rancid stable straw –coated my mouth, gums, throat and nose so I couldn’t eat a thing and couldn’t face an overnight feed after failing to keep one down. The fever kicked in on Friday morning and lasted until 3.30am on Sunday morning – I felt it depart – like a demon, done or defeated –defeated I guess, ‘cos I’m not done.

What a difference a week made: By Thursday Liverpool had returned to winning ways with a truly fantastic 4-goal feast from Suarez and Row & I ventured out for 10-pin bowling with the fun-loving section of the RSPB’s Information Systems team. I was still weak and managed to drop one of the heavier balls, scoring just 6 after two turns– but then I turned it round and finished with 92, 2nd in our lane of 5. But that was enough and we went home before the second game started – thanks Bev for organising it!
But what you probably wanted to hear was that my appetite had returned to such an extent that the dietician refused to give me any daytime liquid food (Ensure) and so we had to go shopping for jellies and yoghurts and rice-puddings. And a week later I’m on proper vegetables (well, boiled until they fall apart) and jacket potatoes (topped with lashings of butter) and fish that falls off the bone. And thick soups and porridge. And puddings, yes, puddings! I don’t do puddings. And tonight I’m having a go at making a roast chicken dinner. So I hope to be ready for Christmas.
And when the dietician heard about my exploits they also reduced my overnight feed by 25% - although I was so full the last two nights I didn’t bother. I’m still waiting for that first glass of champagne and the pint of Thwaites.

Now there follows a piece of news: But first: I’d intended to discuss next clinical steps with the doctor – you see something was starting to nibble at my consciousness – something I, as project manager, knew I should consider – a dark question; A question which I don’t want answered yet. Which I’d managed to keep away – I guess it came in with the demon. It is deeply buried inside another question – like a palimpsest – the question for the doctor could be faced and was a natural next step. So first, the piece of news that prevented the question escaping.
They’re sending me for a scan on 19th December. That is truly stupendous news and caused a dropping of jaws. I wasn’t expecting that until February. We jumped straight to the conclusion that was “When the scan gives the green light, I’ll officially move out of treatment and into remission.” Which is precisely what we want to hear. The question it flanked was “So how will I know that this treatment has worked?” The darker question is “The scans that you do won’t detect the presence of cancer – just heat and lumps. It won’t tell you that treatment has worked. So. What should I look out for?”  It might give the wrong answer – Treatment hasn’t worked and so - the darkest, project manager, question will need to be answered – “What contingency plan would we follow?”

But hey! I get knocked down, but I get up again! (You’re never gonna keep me down**)
Since radiotherapy started ulcerating my mouth in October, I’ve not slept much as my mouth clogged up every half hour - an hour at most – but recently the amount has reduced and I managed 2 2-hour stretches both of the last two nights – whehay!

Treatment at Mount Vernon has been excellent and I’d like to give something back. I give a fair bit to charity (both hours and money). I’m not up to doing direct work yet, but I’ve decided to make the Paul Strickland scanner centre my charity for the next 5 years. http://www.stricklandscanner.org.uk/ They provide and run and maintain the machines. Yes, they’ve just supplied a new one costing almost £1.5m but it costs £800k pa to run. If you want to join in, you can either donate anonymously using the methods on their website or send it to me and I can keep a tally – Bank sort code 20 74 81 – Account number 13113310

I guess a word of warning is needed to finish. I went to the barbers on Saturday, for the first time since treatment began – and was dismayed to see how shaken the hairdresser was at seeing me. She wasn’t prepared for how I looked – gaunt, undernourished, cold, with a chunk missing from my neck. I don’t mind her reaction – but I hate to think of causing any distress – so be prepared – I look 21 again - except for the pink cords.

Oh one more, to finish on a good note: Pain relief is massively down from its peak of 87mg patch of Fentanyl and 4 doses per day of 15mg of Oxycodone hydroxide to just 12mg of Fentanyl and only 2 doses all week of 5mg of Oxycodone. **Chambawamba!






*When I get to the bottom I go back to the top of the slide / Where I stop and I turn and I go for a ride / Till I get to the bottom and I see you again.

(Sorry about the font changes)



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