Saturday 9th January 2016

2pm – Livid. Absolutely livid.

I am surprised that I didn’t come straight home on Thursday and document precisely how angry I was following my clinic visit at the hospital.

The doctor I saw is, apparently (remarkably), the head of gastro at my local hospital. The man was simply awful. He had not read a single page of my file beyond the first page which (incorrectly) stated that I have Crohn’s disease. So when he greeted me with “Alpha, is it? [Small talk with my dad, who was with me, about my name] So you have Crohn’s…”, I was instantly put in attack-mode.

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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apparently my tuberculosis (TB) sample was sent to the lab too late (a.k.a buried under a pile of samples) and was no longer valid *insert string of expletives*.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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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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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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Thursday 17th December 2015 (I think)

8.40pm – losing my metaphorical sh*t

There I was thinking that people who have panic attacks are utter losers, when I found myself getting so wound up and upset this morning that I could feel my heart pounding out of my chest. And it hurt.

In between my best attempt at yogic breathing and chanting ‘hakuna matata’ in my head like Pumbaa on speed (to keep myself from boiling over), I spent much of the morning sobbing. To myself; over the phone; to the healthcare assistants; to the nurses.

The icing on the cake was when the doc who introduced herself as the ‘SHO’ (I googled this and it’s means she’s a junior doctor currently in training, at which stage I don’t know) and asked me if there was BLOOD IN MY POO!!!

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Monday 14th December 2015

4am – saying sayonara to my bellybutton thanks to steroids

Damn clicky IV machine. Still three hours to go until my fluids run out, which will bring me up to normal waking hours. Between a blocked nose, soggy earphones which keep falling out and an uncomfortable elastic band pinching my skin like a joint of roasting ham, I really did my best to sleep at all.

Sleep I desperately need because today, I hope, is a big day for me medically. It’s Monday, so the doctors resume their rounds and will review my progress. I am nervous because although there have been small signs of improvement (read: tiny glimpses of elusive poo), there is still blood when I go.

What they will make of this, I don’t know. Perhaps they will want me to stay on these steroids until I get even puffier and wave sayonara to my bellybutton once and for all. T thinks that it’s joyous news that my outy has become an inny, but it just looks so wrong on me.

As the potassium chloride drip ticks away in the background, I wonder to myself whether there is a link between not being on a drip all day yesterday and whether that had anything to do with the suspiciously small amount of poos I’ve done so far (fewer than six). Does dehydration affect it? I will see if things are any more free and easy now that I’ve been on these fluids throughout the night…

I hate towing the party line

On other non-poo-related matters, I found my mind racing about school in the early hours. Mum keeps telling me to do something nice for them like a Skype call or a video recording (or God forbid, even a handwritten letter). I would love to do this for my class but I know the Soviet level of censorship I’d be subjected to would make it more hassle than it’s worth. Drafts and redrafts of whatever I’d want to say would probably be required, but I’d rather avoid the aggro. And anyway, I could go off my own back and send a secret message but I’d need to keep the senior leadership team (SLT) sweet if I’m going to be reliant on their goodwill while I receive treatment in and out of hospital. God, I hate towing the party line.

One thing that I am going to be cheeky and do is write Christmas cards to the children. I know they don’t all (or many, even) believe in Christianity, but many celebrate at this time of year by gift-giving and spending time with family. I mean, I’m not going to proselytise (especially given I’m not religious… more spiritual) but for me its Christmas time, so I want to share this with them. The big question is how to sign off the cards appropriately…

With love from, 

Love, 

Best Wishes, 

Happy Holidays,

Kindly!

I want to put ‘Love from Ms. P’ because this is what I’d put to anyone else, and I really do care about my class, but my school is so safeguarding hot that I wonder if this would be frowned upon. My Head even threatened to give my kids a bollocking for writing birthday cards to staff once. GRINCH!

8.40pm – f*cking period

Feeling really fat and swollen today, so subsequently also feeling quite sorry for myself. I have only just noticed my outy belly button start to reappear, which will no doubt be reversed shortly, as I’m due to have my final dose of steroids at about 10pm.

I am starting to really resent the fact they have to give me my final dose so late because I can’t really take my sleeping tablets before then, even though I want so desperately to go to sleep.

To top the whole thing off, I am starting to feel quite pre-menstrual. Nothing beats feeling this crap other than a nice painful period. I just hope to God that they prescribe me the co-codamol I usually take when the reckoning happens.

Experimenting with laxatives before anything more… ‘extreme’

For now though, I am experimenting with laxatives to soften my poo, so it can pass through my rectum without causing so much inflammation. This is Dr. S’s idea (the doc who recently carried out my ‘flexi’ exam and admitted me as a ‘severe acute’ case): he wants to see if this alleviates the bleeding and gives me a better chance of passing poos, rather than just blood. All this, he says, before he tries anything more “extreme”.

If I am honest, I am not that hopeful that this course of action will be effective, but I can see why they’d want to rule out this approach before progressing treatment. I am concerned that I will be discharged once they take me off steroids, even if the bleeding continues. I’ll ask them about this tomorrow…

I really don’t want to be hopping back and forth from mum’s/dad’s/home, although I also really don’t want to be an inpatient at Christmas, so I guess I’m in between a rock and a hard place. At least I’m healthy enough to rest at home, if that’s what’s needed.

T dropped the bombshell that the roofers and Steve the plumber are going to be knocking around from mid-week, which means I won’t have the undisturbed privacy I was looking forward to. On the other hand, I’ll be travelling back to mum’s place before too long, so I can convalesce there.

Tomorrow is the dreaded cannula change day. I really hope that the lovely nurse is on duty: she is the only one who has managed to get a line first time so far and I have no pain where she situated it… fingers crossed!

 

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