Chocolate chips and Cauliflower

Trecked up to Addenbrookes yesterday just for a clinic check-up and ultrasound with my dad. Had to be in Cambridge at half 9, which wasn't fun. The early morning drive through the fog was incredible though - huge dense pockets of it hugging the ground until you escape out the other end into gleaming sunshine! Mornings are odd things.

Nothing much had changed on my ultrasound - spleen couldn't fit on the screen (too darn massive), and apparently my liver looks like a cauliflower. The guy showed me this huge egg-sized bump sticking out of the top right hand corner like a disgusting growth, and all these nobbly pointy lumps all over the liver. I have a pretty tough stomach, but i'm not going to lie, I felt sick. I have this horrible deformed thing growing inside me. I just want to rip it out myself and fling it as far away as is humanly possible!

I also found out they're not going to replace my gallbladder when they take it out along with the liver and panc and duodenum, because you don't really need it and there's a risk it could get infected post op. Awesome! The doc said my surgeon, Mr Butler, wanted to see me and say HI, but he had just been called to a kidney transplant. Someone had probably been waiting years for that, so that's pretty special. Walking through the hospital to get bloods done I kept thinking about someone, somewhere in this giant labyrinthine monster of a hospital, lying in an operating theatre with Mr Butler working his magic. It'll be me soon. Soon ish? Ish? It's so exciting!

Dr. Allison was pleased with my weight, my lung function, my muscle mass, and my decision to re-start my antibiotics despite Brompton panic. I feel so chuffed each time I say I still haven't needed any IV antibiotics - not since december last year. 10 months. Nearly a year! But i've been working so hard at maintaining my lungs, out of pure fear that i'll be declined a liver. When you have something to really work for, you try so much harder than you even thought you could. It's like a lung function - even when you think you've blown your absolute best, there's alway a tiny bit more you can squeeze out. When I was little and my mum would do my patting physio, she'd name all these yummy foods one after the other, and for each one i'd have to take a little breath in, until I had filled my lungs up so completely I was about to burst. She'd then say "chocolate chip!" and i'd have to squeeze in one more tiny bit. Even when I thought I couldn't do anything more, i'd always squeeze in that last chocolate chip!






I always think about that chocolate chip, and not just when it comes to lung functions or physio. Thanks mummy. (I always eat one more too...!)

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...

A stream of blabbering consciousness

OK I'll try not to go too Virginia Woolf on you, because we all know that could end up disastrous and potentially boring. No promises though. I KNOW I keep posting about CF stuff, but to be perfectly honest, not much is happening in my life right now apart from CF shizzle. Trust me, I cannot wait until I can start blogging about a life like the one I had a couple of years ago! And it'll be even better because it'll be a life without hypos and blood sugar monitoring and creon with every meal and shitty hangovers. I stumbled upon a blog where the person complains about having to monitor her blood sugars for 48 hours whilst in hospital, and how annoying and tedious it is because she can't snack or eat anything too sugary etc etc. I wanted to scream at the screen "try doing this every single day!" 48 hours in hospital doesn't even take into account energy used to travel places, walking about, socializing, drinking - every single thing that affects sugar levels. I'm just jealous. It's such a delicate art to get right, takes so much forward planning and thinking ahead, even seems mathmatical at times when trying to calculate how much energy you'll use against how many carbs you've eaten against how much insulin you should therefore take. It's hard. I like to think of it as keeping my little grey cells active whilst they otherwise would be rotting away as I watch Neighbours day after day. Dust to dust, ashes to ashes, wasting and sitting and stewing as I slowly become a shrivelled body with an australian accent. I already have a shrivelled pancreas - two decades of it being completely defunct. I can't get over how lucky I will be to have a new pancreas. Proper life changing shit right there. Did I ever write that i'll have two pancreases?! They're not going to take the current one out for some reason, but due to it's shrunken size it won't take up much space. Odd huh. I keep having Tarentino/CSI style visions of my autopsy and the forensic pathologist discovering this absurdity within me. "Holy moly! This gal's got two fucking pancreases! Whatta freak!" My mind is slipping into it's black comic ways. It does this all too easily. This sunny facade hides a comically sinister interior. Maybe it's because i'm not fazed by blood nor gore nor shockingly blunt facts about the body. My mum's dad was a doctor, and she brought me back his book of colour photographs of the insides of the human body. Cadaver after cadaver after cadaver. I'll be honest, it was a little queezy-making at first, but you de-sensitize very quickly to the puffed out organs and rubbery skin that almost looks like Egyptian papyrus paper. It's fascinating. Imagining that once they were functioning entities with blood rushing through them, powering them, as they relentlessly work to enable people to write drivel on blogs (it's an old book, so they were probably writing drivel in ink to lovers far away or to the next door neighbour asking them to please refrain from having the wireless on too loud.) But now they're just artificially coloured ghosts of lives that once had been, delicate yet scarily robust as if Damien Hirst had created yet more modern art soaked and protected in formaldehyde.  I now have a weird fascination with finding people's livers and spleens and doing that 'tap-tap' thing doctors do and pretending I know where everything is. The thing is, it's not hard when they're bloody massive, but normal people's ones are hard to find! Still, I go, "ahh yes, no hepatosplenomegaly here". My mum looks at me like i'm frickin bonkers. But go on, say that word, and I bet you'll want to say it again and again. I read on wikipedia, it's the simultaneous enlargement of both the liver and the spleen. Hepato - spleno - megaly. I passed a degree thanks to wikipedia. I love you wikipedia, you unreliable beautiful source.

How's that for stream of consciousness. Actually, kinda shit.
I could go on, but I won't. Because I know you stopped reading a long time ago and just skipped to this paragraph because it was shorter. 

I'll bullet point the rest.

- Today I am eating jelly babies and catching up on Once Upon A Time and painting strawberrys on my nails. 

- Yesterday I used my Freedom pass for the first time, and caught two busses home BECAUSE IT WAS FREE AND BECAUSE I COULD. Saved 5 mins of walking. Felt brilliant.

- Our Sistine Chapel bathroom is nearly finished and looks beautiful. I'm going to order candles with Raphael's cherubs on from amazon. Then create and frame a photoshopped version of our cats, that would look a bit like this.

- Watched Bright Star again last night with a fellow Keats lover while eating ice cream and (more) jelly babies and carbonnara. Not all together. I love Ben Whishaw.

- I need to wash my slippers because they're getting a bit smelly. Sorry.

Croque Monsieur, madame?

My appetite has returned! So I decided to celebrate this triumphant return with a breakfast the Calorie King or Queen would be thrilled to bits with. They would set their trumpets blazing, their flags waving and their Knights in extra shiny armour to line the route from kitchen counter to kitchen table (or in my case, living room sofa/ bed) to herald in this long-awaited return.

So I figured, by always getting up at midday (or later, never before), i'm missing out on a meal. In hospital, by the time I would have had a measly breakfast at home, i've already had a FAT breakfast, biscuits, lots of tea, and a proper hearty hot lunch.

So today I woke at 10, had a cereal, went back to bed, woke up again at 12 and made myself this baby:

That is one calorie packed toasted sarnie.

2 bits of bread, buttered both sides (so it's like a proper toasted sandwich)
Layer of cheese
Layer of ham (6 wafer thin slices)
Layer of chorizo (5 slices)
(Another) Layer of cheese
Sliced tomatoes
...and maybe more bits of cheese

Put in a toastie bag, toast in the toaster.  Or if you have a toastie machine, use that!

Meanwhile, make, or heat up the bechamel sauce - I already had one made from when I had this yesterday...
Butter, flour, milk, cheese, pepper, and I put a little bit of mustard in too, all stirred up on the hob.

Then put the toastie in a pan
Cover in the sauce
Sprinkle breadcrumbs on
And put under the grill until it bubbles!

Then eat. Yums.


I had two of these today. All before half 2! Divine. It's not quite up to hospital standard just yet, but I do constantly graze all day on salami, crisps, more salami, ham, toast, chocolate... you get the idea. I'm then so full I have no choice but to sit and do nothing... and, um, eat more. Tomorrow I might try a croque madame - which is this, with a fried egg on top!