Thursday 24th December 2015

3.45am – today’s side effects, brought to you by Infliximab

Good news – I’m free! Bad news – I feel like shit.

Well, when I first woke up (at 1.15am) I didn’t feel bad; rather, my mind was racing – I felt as though I had slept a lot longer than three hours thanks to that viscerally wired feeling you get as a steroid side-effect.

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Tuesday 22nd December 2015

10.20 am – lost my sample, but not my shit

I have just seen the Scandi doctor, who doesn’t seem very hopeful that the Infliximab will work, but the good news is that I think I’ll be getting it today!

Ready against the odds really, because apparently my tuberculosis (TB) sample was sent to the lab too late (a.k.a buried under a pile of samples) and was no longer valid *insert string of expletives*. When I heard this from the IBD nurse, my jaw nearly dropped open, especially when she said the bloodwork would take a day or two to re-test.

Without a negative TB result, I don’t think they are supposed to give the drug, so days started to roll over in my head; ever closer to Christmas.

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Monday 21st December 2015

8.10am – Enema of the State

Not the worst night’s sleep so far – think I only had to get up once or twice. However, bum is not in a good way today: quite painful when passing poo and still blood. Could all the enemas be making it worse? They certainly burn when I use them, and the glycerin is really hard to keep in. Just makes me want to poo, and what follows always hurts. Not looking forward to using all this crap at home.

1.45pm – an escalation

Saw the Scandi doctor at midday. He looked disappointed when I told him that I didn’t feel any better. In fact, he slapped his ID card onto his forehead when I told him I felt more ill for having been in hospital. I guess that’s not a glowing appraisal, but this has never really been about clinician skill; rather, it’s been a case of ‘suck it and see’ with all these various treatments.

Sounds like some sort of pesticide…

The long and the short of it is that I will be sampling the deliciously expensive Infliximab (Remicade). It sounds like a pesticide (some of the listed side-effects aren’t far off) and it works by inhibiting something called the Tumor Necrosis Factor (TNF) which is associated with inflammation in the body.

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Sunday 20th December 2015

9.10pm – (hopefully not) jinxing it

I have had a cracking headache all day long but I’ve resisted the urge to ask for painkillers because I’ve been taking them for 10 days straight now, for one reason or another. Part of me worries I could have a painkiller headache (heard about these on Radio 4 the other day): apparently if you take them for long periods of time they can actually start to give you headaches. Brilliant.

Usually by this point in the day I have written in here by now. I think that some of the delay is to do with not wanting to jinx anything about tomorrow (especially being discharged) by writing about it, which is clearly insane. Also, I feel really mixed emotions about going home because while I would rather be at home (good food / sleep / company), I’m concerned that the bleeding hasn’t been dealt with. Just more question marks hanging over my future.

So if they tell me they can’t discharge me tomorrow I will be so frustrated, but I suppose an extra day won’t kill me. When would things start getting really desperate? Probably if I was still here on Christmas Eve! Oh god, I can’t think about that.

Poor old T seems to be getting ill at the moment and has also given herself food poisoning to boot. She’s been running around like crazy after me, work and family and not at all looking out for herself. I wish I was well enough so that I could look after her. Neither of us really appreciated how much we support each other until I ended up in hospital.

 

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Saturday 19th December 2015

7am – The Bride of Chucky

I can hear “‘Tis the season to be jolly, fa la la la la, la la la la” pumping from someone’s radio in a nearby room. It is way too early for that shit. Even I had to turn down Radio 4. Only (theoretically) two more sleeps left. Hang on in there sanity!

As I sat on the toilet just now, cramping and bleeding, it came to me that when I see the doctor next I should perhaps mention what happened when I had a tonsillectomy back around 2010…

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Friday 18th December 2015

5.45am – dem dry bones

With all of these hospital treatments and effervescent tablets churning up my insides like a cement mixer, it’s really hard to get a decent night’s sleep. I woke at midnight, 2am, 4am and then dozed until now.

Alongside the frequent trips to the bathroom, I have been getting joint ache in my knees and ankles; alongside some less-than-welcome period pain. I am somewhat relieved that the the rheumatologist who examined me yesterday said she wasn’t worried about bone inflammation. She even referred me for physio to keep things mobile while I try to get into remission.

T and Jules thought it was hilarious when they saw me hobbling around like a grandma today. They even gave my mobilisation exercises a soundtrack of slow jamz music. I think that the funniest thing is how chub-chub I’ve got thanks to the steroids.

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