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Living With Cerebella Ataxia

It’s All in the Figures

I am lying in bed in HRI being prepped for my eighth cycle of wonder drug.

 

What about my steroid cover? (It’s to prevent a reoccurrence of 2007’s meningitis episode.) 100mg a day. You what? No one takes that much for this kind of thing. Err. Well, yeah they do. I explain at some length. I can see the SHO designated with the task isn’t too sure that I’m not a self declared “expert” patient who knows better than he does. There are a few about. Especially on neuro wards and they have no social skills what so ever. Or dress sense.

 

I proffer my mobile. Call this number in London to double check. He does. I get the tablets.

 

He reads the composition of the bottle to his mate. This is to double check and avoids mistakes. After all not only does this stuff cost £12,000 a cycle (as was pointed out to me once, in a rather mean minded way by a HRI Cuntsultent) but also is rather lethal if mismanaged.

 

58g per day. No, it’s 38. It says 58 here. It’s a mistake. No it isn’t, you’re the one always going on about how wonderful this Prof is. Yes, but it’s a mistake. Mobile re proffered. GG is away. Speak to Dr. O’Sullivan, native of Listowel, why I offer this titbit I have no idea. Shame about the Tigers comes down the phone. You what? Christ. Yes 38g. Bloody hell. 

 

An hour later. That’s a big bottle I muse. I check my blood sugar. 28 (4 optimum 9 at the high end of good). Shit. The concentration is wrong. 200 ml is half the concentration, which contains too much glucose for my sensitive bod.

 

I ring the emergency bell and carry on reading “The Best Trip I’ve Ever Been On. Hull City in the Premier League”, a book in which “their” and “there” are often mixed up and Kevin Kilbane plays for Northern Ireland. Brian Glanville it ain’t.

 

Twenty minutes later. Where the fuck have you been, becomes sorry to bother you but.. No it’s right. But. Look it’s right; they don’t do this stuff in 100ml anyway. Yes they do, it’s my eighth cycle. Look of contempt. Mobile is proffered. She demurs. It’s my registration on the line. Pity you didn’t think of that when you ignored the alarm. I actually do say that. Ring Oncology at Castle Hill if you don’t believe me, and by the way my Dad is bigger than yours. That’s the vibe of this conversation. She rings. I’m right and we get on with it. What might have been….

 

 

 

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About dermotrathbone

Writer and co author "Through Red Lenses". Activist Unite the Union, Save Our NHS Hull. Fan of Yorkshire County Cricket Club, Hull FC, Munster and Ireland Rugby. Views are mine alone and may not reflect the organisations concerned.

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