6.25am – an experiment in sensory deprivation
We are scarily close to a full week in here. Not what I had imagined at the start. How much of this is based on the slow pace of, well, anything happening in hospital or the slow pace of my treatment, I don’t know. As with most things; it’s probably a bit of both.
Outside of hospital, yesterday was a bit of a nightmare day for T because workmen left a big gaping ‘RAINWATER THIS WAY PLEASE’ hole in our flat roof after they went home last night. Seven panicked messages from T followed along with a woman-on-the-edge-of-a-nervous-breakdown call (which given how much of a cool cucumber she is usually, was quite upsetting). I knew things were getting bad.
And so today we hope that whatever emergency bits they patched up late last night have (and will) hold any further barrage, especially while she’s out at work this morning. It’s a big day for her today: she collects her warrant card so she’s ready to start at her station tomorrow. I wonder how young she looks in the photo?
Just spoke to her on the phone now and she sounds more chipper this morning, which hopefully means that our roof survived the night. Now I don’t have to spend so much of the day worrying… just being bored out of my skull.
How to be bored. Help me out here
I saw a class at the School of Life – a pretentious little shop/seminar space in central London – which sells classes to things such as ‘How to be bored’, ‘Surviving your 20s’ and ‘How to choose a life partner’ (all rather big asks for the £35-55 price tag). I wonder what their boredom expert would prescribe for my current predicament?
Obviously I came well prepared for hospital: packed plenty of books; kindle fully-charged; stacks of shitty magazines. I haven’t even read Private Eye yet – very uncharacteristic. Whenever I sit down (or rather, lie down) to read for any extended period of time, I simply find myself staring into space.
In the back of my mind there is a paper on sensory deprivation and mental function involving experiments with lab rats, and a little part of me feels a twinge of sympathy with these fluff-balls: locked up all day, enclosed by white walls, running around (if lucky) without so much as a clue what’s going on.
At least I haven’t had a human ear grafted to my back pelt.
When mulling over my experience so far with T last night, I decided to try and count on my fingers how many different meds I’m on now. Perhaps the walking-pharmacy feeling I’ve got could be contributing to my malaise?
Weirdly, the calcium chewable tablet is the worst: always makes me heave. Give me a needle anyday!
Fourty-five seconds until 7am. Almost a good night’s sleep tonight. I did wake up at about 2am and had a really weird, foamy looking light-brown poo (no prizes for working out that’s to do with the foam enema I just started taking, which burns like hell when you spray it up your bumhole. Thanks for that, Dr.).
Back to sleep before too long but up again at 6am. Felt like I needed a poo after I had a wee, but all that came out (quite typically) was blood. I see it run into the bowl like a nose-bleed. Still no signs of progress. Clots on the paper when I wipe. God, I wish I could get to the bottom of whether these clots are real or whether they are undigested bits of the Asacol tablet coating. Maybe I should ask the doctors today if they will do another stool sample?
Really f*cked off with it all
Something wasn’t quite right on the ward yesterday. The doctors were running super late (I think I got seen on rounds at about 5.45pm) and the consultant was nowhere to be seen all day. The doctor I took an immediate dislike to on Monday (because she spent the whole time in my room without so much as a ‘Hello, I’m doctor x’) was leading the conversation with me yesterday. I am only a little bit ashamed of myself for exclaiming, “I just feel really f*cked off with it all”. I wanted to impress on her how frustrating it feels for no progress having been made and I also felt like I had to raise my concerns that the various less-serious treatments (steroids and Asacol) are all things that I tried before I was admitted! If they didn’t work with the extra boost of IV steroids, then I am seriously doubtful that they will work without this.
She did try to reassure me: “We won’t discharge you until you are getting better,” but I know how desperate they are for beds and how they see my condition as ‘localised’, which means its not having serious systemic effects on my body, such as fever and vomiting (yet).
Outwardly, I suppose I look well enough to go home and the inflammatory markers in my blood aren’t worrying the docs. My fear is that they’ll fob me off to clinic in a week or so and we still won’t have got to the bottom of this. All I’ll have got is a bigger prescription bag of medicines, which are (arguably) unlikely to work.
8.40pm – I think I’m going crazy
Seriously bloody fed up today. Saw a different doctor than usual, who I later found out lied to me about my consultant being ‘off-site’. She didn’t know anything about my current condition (e.g. had no idea that I had been bleeding for months on end every time I went to the toilet). She made no decisions at all or explained anything about my treatment plan. She said she would call the consultant to check whether I should stay on steroids intravenously but I never heard back from her.
So all I could do was cry to the nurse, who did her best to chase things up. She said the notes say ‘continue with steroids’, which I think means the registrar didn’t talk to the consultant and she’s hedging her bets.
In the meantime, the nurse asked me for a sample (which I assumed meant it was going for testing), but apparently they just wanted to look at it! The word has spread around the nursing team that the blood was quite bad (no shit: that’s why I’m here!). Now all there is to do is get the docs to take it seriously.
I have decided that I will talk to the charge nurse tomorrow before the docs do their rounds and insist that I see a consultant and get some answers.
If I don’t get clarity tomorrow, I think I will go crazy here. Here’s what I need to know:
The treatment isn’t working and the bleeding is worsening, so what now?
And how long will this take?