Jaws without the shark

Wahey guess what treat lays instore for me tomorrow? I'll give you a clue: it involves cameras, drugs, and bang on trend clothing.

Naah don't be silly it isn't a super cool Abercrombie model party in the sparkly sordid depths of a Mayfair club, it's an endoscopy! Duh! (Oh i've missed that sexy hospital gown.)

It feels like i've only just recovered from the one two weeks ago, and I SWEAR, if this one stops me from consuming any more delicious KFC chicken shaped calories, i'm not going to be a happy chick (lols, see what I did there?). As tasty as tomato soup with whizzed-in hot dogs sound, it wasn't really that enjoyable. Funny that. And my GP has been ridiculously incompetent in ordering me the high calorie milkshake supplaments (they're just a bit floppy in ordering any of my meds - one tub of creon and one blue inhaler for a two month supply? Deekheads) so i'd rather not have to rely on their haphazard attempts at DOING THEIR JOB to avoid starvation and malnutrition. (I know I can buy milkshakes. But I like free stuff.)

I'm hoping there won't be too many more of these tedious procedures - I don't want to jinx anything, or get too optimistic given the completely unpredictable nature of transplants, but i've now been waiting 3 1/2 months, and I was told the average wait for me would be about 3 to 4 months. It's quite a short waiting time due to me needing multiple 'bits', and being on the national register. Though liver waiting times are significantly less than lungs, for example. Every time I have something done such as an endoscopy or vitamin injections, even when i'm doing my insulin or taking enzymes at dinner, at the back of my mind I always wonder if, (and secretly wish that) this'll be the last time. Normally I try not to have those thoughts because it's a sure way of preventing my phone from ringing, hence the 'secretly'! And then I get all schizo and pretend to myself I didn't think that... when I did. And I know I did.

The other things I wonder:

- Will I get my call before Big Brother finishes?
- Will I get my call before I finish my book?
- Will I get my call before the Olympic closing ceremony?
- Will I get my call before Carnival?
-...before my mum's b'day (sept 7th)
-...before my bro (Sam) goes to Uni?
-...before we finish the bathroom?
-...before I go to see the Paralympics? (I know!)
-...before I ever get round to tidying my room?
(These ones, minus the last, I want my call to come after!)


This is a bit of an aside, but I feel like putting these quotes in because they're hilarious. From this article about the writer Will Self.

The coffee pot boils, no doubt in a deliberate attempt to impose dull, naturalistic order on the contemplation of what it means to exist. Self unfurls himself from his ergonomic computer stool and gingerly removes the pot from the stove using a grubby towel.

"I always start with physicality when I'm writing as a woman. So I always have a vagina and think about having periods. I always start with an embodiment. And I think when I read men writing about women, they never seem to have thought about that. They've never thought: actually, you've got a cycle, you're different. So if I do succeed at all, that's what it's down to."

He is already beavering away at his next novel, the working rubric for which is, he tells me, "Jaws without the shark". 

Inferno

Last wednesday I had another endoscopy at Chelsea, just to check again for any varicies (popping out/ leaking blood vessels in the food pipe), and if all the previous ones are still holding and A.O.K. The actual procedure was pretty all right - sedation, dimmed lights, nurses holding your head... it's all quite relaxing in a non-relaxing sort of way.

As I came round afterwards, there was a big sort of muddle, and I ended up chomping down a sandwich as I was told it was fine to eat. It wasn't. Short story short, my food pipe has been agony ever since. I haven't been able to eat or drink without having immense pain afterwards and a sort of reflux/heartburn sensation. Even eating tiny wee morsels of food and sipping drinks it's been hell. My appetite hasn't diminished, so it's proper torture. Friday night I said FUCK IT and got 3 pieces of fried chicken, chicken wings, chippies and a coke for din dins whilst slobbing out in front of the opening ceremony, and gobbled it all up despite the intense after burn. Yes yes, not wise at all. Fears of having lost weight and hunger made me a desperate chick.

Saturday night everything got stuck sort of half way down, and instead of slipping down after a few mins, it just got worse. Big cough to chuck it all up again and out comes not only a lovely chomped up half a sandwich, but loads of blood. Oh fuckity. They always ask me "have you vomited blood?" and woohoo, now I have.

Yesterday I went to A&E which was long and tedious and nothing really happened. All my blood results showed I wasn't actively loosing blood (yay), and blood count was pretty allright (yay), so they just sort of forgot about me - or really, fed me to the lions a.k.a psycho grannies on Acute Assessment ward. Oh joy. And I wasn't allowed ANY FOOD WHATSOEVER.

Today my nurse was a lady who used to be at the Brompton, so we had a good old bitch about it, and about crazy geriatrics, and endoscopies, and clueless pharmacists. She tried her best to get something to happen in the midst of a serious lack of doctors but to no real avail, however eventually I spotted Dr Steel: gastro doc extrordinare and endoscopy pro (it wasn't his fault, I blame agency nurses who don't read notes and me obviously residing in the 3rd circle of hell. See pic.). He was like a breath of fresh air clearing out the dead cobwebs of misinformation and hospital ward mismanagement, telling me straight away what was the problem, why it happened, and what I should do given that I thankfully haven't continued to lose any more blood in serious or grotesque circumstances. "Go home!" said he, "and eat nothing! Only liquids and nothing but from now until no pain is felt!" Food pipe has basically been narrowed considerably given all the banding was done in the same place, and the protruding tied-off dead varicies haven't fallen off yet, so it's even more narrow. Everything I swallow either gets stuck or has to push past these tender varicies, and because I had been eating it's made everything bleed and irritated. I imagine my oesophagus is a bit like Dante's hell. Gets worse as you go down...! (Rejection of sin? Rejection of food more like.)

Looks like a food pipe, right?

Now I have all my meds in liquid form (can't bloody wait to taste those monstrosities, can you imagine!? Liquid cipro?! EW) and a fridge full of Mars Refuel milkshakes and Oasis. I've given my current KFC, pizza, and steak&chips cravings a raincheck (without much luck to be fair), and instead will experience the extreme dieting lifestyle. Extreme dieting, high calorie style. Of course.

I was sort of hoping they might do another endo, and then I could miss my clinic at the Brompton tomorrow. No such luck. I just don't think i'm that lucky.



Update as of 12am: I'm never attempting to have liquid medicine EVER AGAIN. *shudder*


Update as of 31 July: Went to clinic, had a lucky escape with a surprisingly good lung function (76% FVC) despite having a nasty chest, a residual cold, and hardcore week! Really thought they were going to keep me in. I think the new lung function machine is the root of this surprisingly brill blow as my chest was rumble grumble city. At least this gives me a chance to get beneath this temporary cold induced cough and fling it out into the stratosphere without jepordising transplant availability. Lots of high cal supplements to take (YUCK) to make up for inability to eat solids. Short term pain for long term gain. Oh jeez...