A Calm So Deep

I've had such a fun month. I'm truly loving everything life is throwing at me these days, which is mostly friendship, love, food, and fun. I also have a job! It's a paid internship at a marketing/PR company in Great Portland Street, that i'm ecstatic about starting on monday. These leisurely meandering days will soon be a thing of the past, and I can't wait to hurl myself into normality.

Health wise, i've put on quite a bit of weight - I was this weight a couple of months ago before I had that stream of colds and coughs around christmas, yet then everything was utterly different. Before, when at 50kg, I felt (and was) absolutely (relatively!) huge around my tummy and my face, everywhere else still scarily skeletal. Now however, my face and my tummy look the trimmest they've been in a good long while, but my arms, legs, bum and hips have filled out! I'm so over the moon - I feel womanly... and sexy and.... normal! I've been taking peppermint capsules and charcoal capsules (charcoal in the middle of the day to stop them absorbing the other meds), and they seem to have made a huge and noticeable difference to the bloating. My chest has also been the clearest it's been since my transplant over a year ago - why I even had clear lung gunk the other day! I'm not waking up fighting for breath, nor reaching for the inhalers before I can even think about doing anything with my day. I can't fully express what an incredible feeling it is; it's just so liberating. I'm managing to keep up if not thrive on this fun and hectic lifestyle I have at the moment, filled with gigs and pubs and outings. I may start some cipro next monday, just to buffer myself for the onslaught a working life may have on my body.

Almost everyday I go for a ramble across Wormwood Scrubs to keep these puffers stretching - a huge bit of parkland just round the corner from where I live. It hosts fantastic views of London - every landmark you can think of I can see from this windy spot. Anyone that knows me (or reads this blog!) knows i'm a sucker for a view, and I could easily spend hours up there, whiling way an evening watching the beast that is London, now suddenly draped in serenity and stillness. Wordsworth writes of my city: 


Earth hath not anything to show more fair:
Dull would he be of soul who could pass by
A sight so touching in its majesty:
This City now doth, like a garment, wear
The beauty of the morning; silent, bare,
Ships, towers, domes, theatres and temples lie
Open unto the fields, and to the sky;
All bright and glittering in the smokeless air.
Never did sun more beautifully steep
In his first splendor, valley, rock, or hill;
Ne'er saw I, never felt, a calm so deep!
The river glideth at his own sweet will:
Dear God! The very houses seem asleep;
And all that mighty heart is lying still!

(Composed Upon Westminster Bridge, 1802)

Everytime i'm up there I think of that mighty heart lying still - such power and such majesty, yet seemingly so calm, so tranquil. "Never saw I, never felt, a calm so deep!". Again Shelley pops to mind - the "unremitting interchange" between your surroundings and your own mind, "which passively now renders and receives fast influencings" - his deep calm heightens my deep calm, as it's true - never have I felt a calm so deep in such a long time. This view, this space, this endless horizon perpetuates my happiness and i'm left overwhelmed by just how awesome life finally fucking is. Of course the splendour falls short of what somewhere beautifully high up like Primrose Hill has to offer (you know i've actually never been, whats that about!), but it still more than adequately satisfies my Romantic tendencies, and my love of all things beautiful, all things sublime.** My housemates and I would cartwheel and do 'yoga' on there all the time, but now they've sadly left me i'd feel like a bit off a loony toon doing abysmal flips by myself. Instead I arm myself with headphones, tea in a water bottle and a kitkat in the pocket, and fill my lungs with the crisp air right down to the forgotten sleepy tips.

I'm definitely going to work hard so this fantastic spell doesn't catapult downhill as soon as I start working - I honestly haven't felt so good or so content in such a long time, and I hope this simultaneous deep calm and energy lasts for as long as is humanly possible. 


*PS I don't have osteoporosis anymore!!! I fucking love you Liv II !!

**Interestingly, normally the sublime is associated with terror, but I seem to go with Shelley's interpretation (and radical departure from the normal interpretation) that the sublime can lead to a greater understanding of nature and 'truth' (yourself? Everything?). I remember he wrote somewhere that for a "cultivated mind" the sublime has this alternative meaning, and I guess he means those not influenced by the supernatural, or those that believe in religious ideologies ("large codes of fraud and woe"). I've never found the Sublime terrifying, it only heightens my love of everything beautiful, and seems to cement me within this mysterious and bonkers world. 

Thou hast a voice, great Mountain, to repeal
Large codes of fraud and woe; not understood
By all, but which the wise, and great, and good
Interpret, or make felt, or deeply feel.

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...!)

Control, ALT, delete

YOUR OWN, PERSONAL, JESUS.


Clinic. I just went and blew my best ever blow in recent history. 78 and 60 percent! GO FUCKING ME. I have no doubt it's because of my super speedy, super dooper podhaler, as well as my cycle rides. I feel like I own the world! Or have it under my thumb - it's fab feeling so in control of these puffers. The world is mine mwahahaha. Weight up too, is there anything that can stop me?!

Well, yes. Is the simple answer. And surprise surprise it's called MY LIVER.

(Before I go on, just want to add I have these new fantastic headphones, and Absolute are blasting out some TUUUNES! (Hence the Depeche Mode up top, I wasn't being all psycho doolally...) Edwin Collins always gets me strutting ma stuff, like that M&S ad. Even though I don't have much 'stuff' to 'strut'. And i'm sitting in bed. But you get me.)

SO, yes, back to the dreaded liver. One of the levels (ALT) was about 5 or something times higher than it's ever been (and it's normally pretty darn high) - I saw on the graph this relatively tame jagged line, then BOOM it shoots up like Mt. Everest amongst a horizon of Notting Hills. Oral antibiotics have now been stopped for at least 2 weeks to take as much stress off the poor thing (poor? evil? I'm conflicted) as possible.

Middle column = my blood results.  Right column = what they should be!

The good thing I suppose is I now have an explanation to all these niggling ailments that have been quietly bombarding me for a week or so. My digestion has been completely awful despite both enzyme and eating habits having not changed at all. I've also been absolutely exhausted. I thought it might have been an iron thing, but as I hadn't lost any great quantities of blood recently (even the coughing up of blood has subsided a little) it remained a mystery. The last few days I haven't been able to get out of bed - my alarm has been put on sleep and reset for an hour later more times than I can count! Not even in the days of staying up all night, galavanting round London in some drunken stupor and jiving my butt off in Gaz's rockin' blues for hours etc etc have I been so utterly shattered. It sucks.

I now hope my lungs don't turn crap without my trusty bug killing crime fighting super saviour duo of doxycycline and azithromycin... but I suppose with them being rather sparkly it's quite a good time to take a breather. It'll be like a little holiday ! Just the podhaler! NICE. Every cloud eh.

I will try drag myself out for a cycle later, at least to get some chippies, but at the moment I feel like i'm caught between the world of the living and the world of sleep. No amount of caffeine has shaken me out of this tedious little half-life, proper 'death warmed up' shizzle. But if anything can lure me (albeit partially) out from this daze, it's gonna be a big bag of hot yummy salty fatty chips!

No reason for this pic, it just makes me happy.
And reminds me to buy more... ooee

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...

NATIONAL TRANSPLANT WEEK

Transplants are, luckily, something most people never have to think about. I never thought about transplants or organ donation much before a few months ago, despite having CF.

But now i've been whooshed into this world that revolves around transplants, I feel like I really need to share how important it is.

It's understandable that talking about becoming an organ donor once you've passed away is a pretty intimidating thing. No-one wants to talk about, let alone even acknowledge their mortality. It's all a bit dire. So it gets pushed to the forgotten regions of your brain, while you then continue to live your life to its fullest. And so you should! Everyone should!

Everyone, including people who need new organs to live. So don't forget about it just yet. All it takes is to say to your loved ones, your family, that if something should happen, please let my organs be re-used! Sign the donor register! Live your life to it's fullest, then let someone else live theirs to their fullest too.

Organ donation is such an incredible thing, extremely life affirming, and really shows just how amazing human beings can be. The world isn't such a bad place when strangers give other strangers the biggest gift anyone can give.

Notch up your bravery, confront your mortality for 5 seconds and sign up for a donor card, tell a family member your wishes for after you die. Then you can forget about it. But at least you know that by doing that, you're probably going to save and dramatically improve someone's life.

It's not scary. It won't affect you when your alive.

SO CLICK THIS AND DO SOMETHING AMAZING!

And for everyone on the list, I hope you get your life changing call SOON! (This week would be super cool, non?)

DO IT!

I Camb(ridge), I saw, I conquered.

Finally got released from Addenbrookes hospital today! It wasn't the worst hospital stay ever - actually, I quite enjoyed it. I succumbed and payed for those bedside television bundle things - something that the Brompton gives you for free and that I usually refuse to pay into because HELLO you should be able to watch TV in hospital without paying extortionate prices! But anyway I went all out and got the 5 day mega super cool bundle which had so many films - it was heavenly! Last night I watched the new Johnny English -

BIG MISTAKE.

I was in stitches and crying with laughter the whole way through, fluctuating between sheer joy at Rowan Atkinson's genius and utter guilt at annoying the hell out of my ward buddies. As I had headphones in, of course the ward was deadly silent apart from my coughing-come-raucous laughter. I had to turn the damn film off and watch like Emergency Bikers every 5 minutes to re-zero my escalating hilarity. Hospitals make you go cookoo.

Apart from watching films, the week was spent being shipped off for an ultrasound, an MRI, an endoscopy (yes ANOTHER FRICKIN ENDO), being squished full of Meroprenem (an antibiotic I never have!), and being squeezed dry of blood thanks to the phlebotomists in maroon uniforms and the nurses checking my blood sugars at every possible moment.

Ultrasound was same old shit. Sort of. Nobbly liver, fat spleen, a miniscule dot of fluid. I've had so many ultrasounds recently I can't remember when they found this little bit of fluid, but yes, it's happened. I have fluid. 4cm ish right at the bottom of my abdomen, and on this occassion another tiny dot just under my liver. They also said my spleen was now 23cm - 3cm bigger in 2 weeks? I'm hoping one of the measurements was calculated wrongly and that it hasn't expanded that fast...! Apart from that they did find a lump in the middle of my liver. Got a bit scarred thinking it was like, cancer. Imagine - all this, and she ends up getting cancer. Honestly. This then led to the...

...MRI, which I absolutely hate. It's all the holding your breath, lying flat stuff which I can't do. Last time I was coughing blood (or trying very very hard not to) the whole time, which resulted in a complete waste of an MRI as they couldn't see a thing. I was more prepared this time - I was propped up on pillows and had an oxygen mask so I could hold my breath for longer. I was trying to remix Abba songs in my head to the beat of the deafening and really quite intimidating buzzes, but not even Abba could drown out that aural monstrosity. They saw the lump wasn't anything too dodgy, just a very odd scarred bit.

They found another varicie to band in the endoscopy - obviously the pressure in my arteries/ veins keeps rising. Slightly worried that they'll keep popping up, and there's nothing I can do about it. I just hope I don't get another big bleed because that would suck, and my life would involve endoscopys and fasting and blood transfusions and mushy food on a weekly basis. Saying that, I did by-pass the mush and head straight for the chicken nuggets after the procedure, on the promise to mum that I would chew every nugget a million times. The endoscopy department was the most incredible place - I was wheeled into this waiting bay that was about the size of a cathedral (but not as tall, obv), and along the sides were curtained off bays, each one with a bed. It was like Auschwitz crossed with a chicken battery farm in it's disturbing, clinical sterility, but in a bright pastel-hued almost utopian heaven. (Messed up? Sorry.) Down a corridor paralell to the longest side of the room was room after room of endosopy suites that continued for what seemed indefinitely. Mass production applied to healthcare. There was something quite Kafkaesque about it - if you've seen the 60's film version of The Trial - it was a bit like that. I know i've painted quite a contradictory picture of this place - I simultaneously loathed and loved it, intrigued yet repulsed... awe-struck for sure.

The meroprenem antibiotic was given to fight the infection that they suspected was somewhere in my body and that was causing me to turn yellow. They never found the infection, or sepsis (whatever that means), but the drug did the trick as my Simpsons hue slowly faded to daffodil to buttercup to primrose to sunshine to sick to mushy banana to 'is there something odd about that girl?' ('Probably?').

You get the idea...

I'll quickly write about the hoards of student doctors that were sent my way -  obviously I must be an interesting case as a constant stream of med students came to poke and prod me, to ask about my CF and my liver, to rummage through my meds... they all seemed quite fascinated, and would return the next day with a friend or two ha! I think they were quite impressed with my knowledge of med stuff, which I suppose you naturally accumulate living with a multi-system thing. Endocrine, respiratory, digestive, circulatory... CF is simply amazing in how it's annoyingly shit tentacles reach and affect every branch of almost every system in the human body. It's shit, but my god, I know a lot! Never really realised it, but when the final year student docs ask you questions about why this is affected and how, and you can answer them, it makes you feel quite bloody good!

I had one student who did a trial exam on me - she was asked to do a respiratory examination. At the end she basically said, if it wasn't for the clubbing of the fingernails which indicate a chronic lung condition, she wouldn't be able to tell I had anything wrong with my lungs. GET IN!!! I LOVE it when that happens. Puts a massive grin on my face and I couldn't wait to tell mum that all her hard work when I was young paid off, and all MY hard work paid off too! Wait, is PAYING off!

Well anyway, i'm home, liver levels are a bit more normal than they were (one test should be under 17, mine was 300, hence the jaundice), and my appetite is back to it's brilliant normal self. I'll miss the Burger King downstairs, but nothing beats home-cooked food. Obviously.

Insulin bruises thanks to my spleen and its non-clotting ways! Yuck.

Toesies! Yuck.

Road Trip!

You'd think not much happens on a sleepy sunny afternoon in chelsea. The big cavernous beast of a hospital is resting it's otherwise chaotic and manic claws that spends all week days gobbling up person after person, wooshing them around and poking them then spewing them back (exhausted) onto the smokey fulham road.
But today could have been one of those days. Addenbrookes called the ward where I've been stewing since friday, saying they have a bed for me. After chomping down the last of my KFC, i scooped up all my belongings and yellow me (nicknamed 'buttercup' now - I find it quite endearing if it wasn't for the fact I'm ACTUALLY THAT COLOUR) was booted into the ambulance and driven like a maniac to Cambridge by Mr Smooth FM.
So here I am, again some sort of medical enigma, waiting for the tests to commence. Why did she suddenly turn yellow? Why does she still have a fever?Where is her infection? Why is her blood count falling so fast if she's not losing any blood? Why has she gained so much weight if she's not eating? Why does she have fat ankles?... and random shit like that.
Anyway here I am now in this swanky quiet ward with hotel style loo. And it's the transplant ward! It suddenly makes everything feel very real. At some point I'll be back here, having gone via the other end of the corridor - transplant high dependency unit. Wowza. At the moment it sounds like Wuthering Heights outside as the winds speed along the flat Cambridgeshire plains and channel themselves through the gaps in the windows. You can see the hospital from miles away, stark tall and alone as it rises out of the fields. Just as all you can see as you peer out the windows is the monotonous green, bumping up now and then. Not very interesting, but during the day the sun covers every blade of grass and every cow, making the dull seem quite magical. Dare I say, sublime?! This crazy expanse of the unending unknown. Can you tell I live in the city?! I swear even the rain looks nice here.
Mum and dad are camping about 5 mins away in our trusty camper! Summer hol with a twist. Dad left mountains of munchies for the cats. Bet they're loving it.
Anyway I'm waiting for 2 bags of blood I just heard. Rare. Yum. I think I'll be knowing what's happening as each hurdle presents itself. But that's cool. I'm chilled. They call me Mellow Yellow. Quite Rightly.

Yellow!

Woke up this morning - I AM COMPLETELY YELLOW!

Skin, eyes... oh my god.

Brompton are going to be in for a shock! I look horriffic!



That's it. Thought i'd share my liver failure.



UPDATE as of 6pm - back from the Brompton, no IVs. However, Dr Gyi just called and apparently I DO have jaundice - the yellowing of the skin and eyes that comes with liver failure. Liver function tests were shocking apparently. Goddammit! Dr Gyi didn't believe me in clinic (because, hello, the lights are yellow?!), but has eaten her words and is sending me over to Acute Assessment Unit at Chelsea + West for some tests etc. 


I. Can't. Believe. My. Weeks. 


:(

Made (again) in Chelsea

First of all, I can't wait for Spenny to be the new Bachelor on Channel 5. Thought it was starting today but my aching heart must wait another 7 days for that car-crash-so-bad-yet-so-unbelievably-watchable series. I bet he's going to be a right nob, but hey, isn't that why we love him?!

Talking of Made in Chelsea, I was re-made in Chelsea this week. After coming home from the last A&E visit of previous post, I was back down to the Fulham road the very next day with all the same symptoms. Another endoscopy, and they found a tummy full to the brim of blood and 5 bleeding varicies as the culprits. They were banded with elastic bands to stop any more bleeding by the lovely Dr Steel, who later said to me "I'm never giving you that much valium ever again." Dammit. Bloody worked though, don't remember a single thing unlike the countless other times of retching wretched hell.

They then continued to ply me with drugs to stop this that and the other - antacids, fluids, beta-blockers... anything to reduce the pressure in my portal vein. Beta blockers are never given to chest patients because they cancel out all the broncho dilators (which are beta-antagonists - god you get so geeky living with this), which I bloody need! My chest was tight as hell, and I swear it took them 3 days to order a new blue puffer for me. Wankers. I was also given IV cipro. I am never having that ever again! Cipro in tablet form are known for their crippling tummy aches, but IV's are a whole other ball game!! Never have it! Those of you who have - you know. Think running to the loo. Fast. Eventually I refused the cipro, to junior doctors' horror. I never refuse treatment because I know in the long run it'll do you good, but I did. Took tablets instead. (compromise!) I wanted to refuse everything else, because I was in one of those jaded, discontented, pissed-off moods, but I knew I needed the three days of the reducing the pressure meds if I wanted this whole trauma to stop. They also made me really queesy, and the anti-nausea drugs made me feel EVEN MORE nauseous! I don't get that at all.

After the first day my haemoglobin was hovering around 6 (should be 10). Just before they knew this they sent me down to have a liver ultrasound, and I passed out while waiting for the porter to take me back up again. 1 day and 4 units of blood later I had regained some colour in my cheeks, and was feeling much perkier. The 'hovering mass of freckles' Laura finally had a background on which they could be placed. Not so Twilight-chic, which is always a good thing. I was really quite worried though because since Sunday night I had had hardly eaten or drank anything  - I think because I was feeling so sick on the meds and, well, i'm not really sure. A tummy full of blood maybe? After the banding I wasn't allowed to eat for almost a day, and my food pipe remained unbelievably tender for quite a while... but even today i'm struggling. I managed some thai coconut soup and a bit of sticky rice from my fav Thai place, but it startles me how my appetite has diminished. I really hope it bounces back super quick, otherwise i'm in big trouble with Addenbrookes, and the Brompton of course.

Addenbrookes were aware of all that was going on - Chelsea and West phoned them constantly regarding what was going on - do you think they'll bump me up the list if they knew my liver is failing like this?! To be honest i'm not sure how long it can hold on - this happened quite out of the blue and I suppose it could happen again at any time. My ultrasound wasn't pretty - 20cm spleen, 14cm distended portal vein (yeah wtf?! surely they mean lengthways not width, otherwise that's craaaazy big) and my liver has so many scars and nodules and bumps. Thankfully STILL no fluid - it'll be a sad day if/when I start to get fluid. I think i'll pop.

I hate to think that some people bring this upon themselves. Drinking related liver disease and whatnot. Surely if people knew how traumatic, uncomfortable, painful, tedious, AWFUL this is, they wouldn't do it! But people know what smoking does, yet continue to smoke. They know drugs kill, but continue taking them. Once you've reached a point of pain, it's too late. It's sad. I would never wish this upon anyone. I'm often cynical "yeah they brought it on themselves", but it's hard to stop when you don't actually know what it feels like to hit that wall at the other end. Lucky are those who can jump over it or break through it, but many many don't, do they?

Saying that, I often think about drinking post tx. Haven't decided what i'm going to do, maybe it'll become obvious. Maybe i'll be a changed wee lass and be all "life is amazing I don't drink I just drink naturreeeee and all it's beautyyyy!". (Yeah the Romantics said that but still drank. Just think of Byron. Hardcore leg-end.) But if it works, why not give it something to work for? I'm never going to go bonkers - I think that'll be really bad taste - but i'll treat it to a g&t or two every now and then... everyone loves a g&t every now and then. If you don't... um... hello?

A check up

Had a 'waiting for transplant' check up at Addenbrookes today. First thing, it's unbelievably quick to get to Cambridge from where I live, which is always mighty re-assuring! At the beginning of this process I kept having nightmares about getting THE call and not being able to get there soon enough and missing the organ. Shudder.

There is one thing that does worry me however - I was told that if i'm on IVs and I get the call, they won't go ahead. Ah! I knew keeping my lungs well was important, but didn't quite realise it was that serious. I haven't had any IV antibiotics since december, and my chest has been pretty tip-top since then. Just got to hold up for a little longer. Sometimes the Brompton piss me off, because they maintain their stance that they won't overload me on antibiotics "because it might damage my liver." (Insert another raised eyebrow.) This may seem blunt, possibly short-sighted, but I don't care! I'm getting a new one anyway - but I won't if you don't ply me with drugs! I understand where they're coming from ie don't know how long i'll be waiting, but it's just a little frustrating. I don't want to miss my opportunity. I'm a B+, so only 8% of the population is compatible. Take away another 3% due to size. That isn't a lot of matches...

So i'm keeping well clear of the Bromp. And public transport. And anywhere there may be bugs. In fact, tomorrow I start making one of these:

Bubble Boy!

The doc also seem surprised when I told him how excited I was. Apparently no-one has ever said they were excited... Am I just odd? I know how people can be scared, apprehensive... yes of course i'm a bit of those, it's a major thing. But surely people must get excited at the thought of what new and wonderous life is waiting just around the corner! The odds of not surviving is 1 in 6. That's daunting. A game of Russian Roulette. But surely the allure of playing Russian Roulette is the excitment? I'm slightly tentative comparing it to that, because you probably all think i'm a lunatic adrenaline junkie. It is different though, because a gift of a prolonged, vastly improved life is what i'm gambling all for. And for that, it's a risk i'm willing to take.


P.S. I'm hoping they just gave me that statistic to stop me from wanting new organs... 3 organs must mean a lot of work for the poor surgeons. It'll be a long night for them! I'll be fine somewhere far far away in a drug induced cuckoo-gaga-land...

Limbo

Waiting for a transplant is a lot like being suspended in limbo. The poet Coleridge beautifully wrote that Limbo is "positive negation" - an existent nothingness - it exists yet it is a hollow void, where time stands still and life does not proceed.

   Tis a strange place, this Limbo !--not a Place,
   Yet name it so ;--where Time & weary Space
   Fettered from flight, with night-mair sense of fleeing,
   Strive for their last crepuscular half-being ;--
   Lank Space, and scytheless Time with branny hands
   Barren and soundless as the measuring sands,
   Not mark'd by flit of Shades,--unmeaning they
   As Moonlight on the dial of the day ! ...


There isn't much I can do until I get my call. And not knowing how long you're going to have to wait casts an un-easy and slightly un-settling shadow over the whole thing. It could be NOW, it could be in a month, could be 5, 7 months... a year? How do you plan for that? A proper job is out of the equation, holidays are a no-go. So you wait. Someone pressed pause on my life remote. It IS a strange place Mr Samuel. A strange un-place. Weary, lank, barren and soundless. I imagine this is how a ghost might feel. Occupying a space yet not really there, never aging, simply existing. But of course, unlike a ghost who's immortal time is never ending, at least I know one day this phone will ring, and suddenly time and life and the here and now will burst into motion - someone will have pressed play and Coleridge's soundless barren nothing will be replaced by a deafening "HOLY SHIT!" Never has a silent phone seemed so loud. It is the biggest thing in my life at this moment. At times I forget about this whole weird palaver (transplants are weird. Good, but weird) but when I catch a glimpse of the now pink day-glow monstrosity that is my phone, I think my heart does a little serendipitous jump of joy. I can only equate it to what Christmas eve feels like when you suddenly remember Santa's on his way (eek yay!). The excitement stops both my heart and my breathing for a second, sometimes so strongly to the extent that I hope I won't be needing any of those organs added to my list... just yet. Two is quite enough! (and the bit of gut, don't forget the gut...). In plain english, it's exciting. Coleridge - MY limbo is exciting! Yes quiet and frustrating, but I just know that soon it'll give way to the most important and amazing thing like, EVERRR.

So this silly pink phone never leaves my side. I've turned into one of those chicks who are ALWAYS holding their phones. I know it's far from lame, but it feels really lame. If I ever go clubbing (not likely given my current physique and health) I would be just like those annoying people that are glued to their phones throughout the whole night, twittering or texting or writing a facebook status "omg i'm so drunk i'm having the best time EVER". LIES. Get off your phone then? Anyway, that won't happen. But I just wish my phone would hurry up and ring so I can eventually get back to Oceana.


I'm kidding. Anywhere but Oceana. Even limbo - no, even Hell would be better.

(I could make a pun about going clubbing at Heaven, but i'm just not.)

Blackberry Jam

'Bramble' in a jam jar. 

So the other night I went to The Shop on Chamberlayne road, Kensal Rise. It's literally next door from my friend's flat, so we pop along whenever i'm over. Kensal Rise has recently become the new area du jour - everywhere you look trendy people are strolling in to trendy shops and trendy bars and trendy coffee shops to buy their trendy gluten-free-fat-free-sugar-free-ethical-soya-mocha-choca-wocca-skinny-latte/muffin. Hence, in The Shop, all drinks are served in jam jars. (See, I even wrote 'hence'. That's the pretentiousness rubbing off.) But despite this puke making coolness, the cocktails are TOTES AMAZEBALLS I mean, really yummy. 
The Bramble I think was gin based, not too sweet and finished with a glug of blackberry liqueur which makes the whole thing taste like rolling in a bramble bush with squished blackberrys ending up in your mouth. I normally have the 'Once Loved' which is served in a milk bottle (yeah, I know) and is a tropical DREAM. 
But they're expensive, so hello Tesco.
However, I really should avoid the 'hello tesco's wine section' of the night because my liver is bust and my hangovers now last 2 days. Easier said than done, but I do try. I do I do I do. Don't even drink that much - if I could raise one eyebrow and give my liver a look of 'are you serious', I TOTES would. So, this friday night will be spent watching Big Brother with a bottle of Coke a pack of crispy bacon some home-baked bread I made earlier and a side of insulin. Yum. (That's just the post dinner snack!)

I have succumbed

According to this little gadget I have on my google homepage, i've been waiting for a liver and a pancreas (and a little bit of gut - don't forget the gut!) for 49 days. The first 2 weeks flew by, but now it's like time has decided to play a cruel and torturous joke on me and go as slow as it possibly can. This gadget is also telling me it's been 32 days since i've had a McDonalds, which is worrying me. Pretty sure i've never gone that long without a MaccyDs before. At school I used to have McDonalds every day for lunch, even when my whole school was banned (inner city comprehensive. Rowdy bunch). This is one of the perks of having Cystic Fibrosis - you can eat all that good shit and not gain a drop of weight. My mum wrote a letter to the manager, explaining my high calorie dietry needs, and from then on, I was the envy of the whole school. My friends could come with me too - luckily I didn't have to choose between fatty goodness and friends. Though if it came down to it, I just might have chosen lonerville... 

So this waiting game is one of the reasons I have succumbed and started this blog. I spend my days doing nothing. I sleep, watch Home and Away, then Neighbours, then sometimes Law and Order but it gets really hardcore, then sometimes the channel 5 afternoon film. Notoriously always absolute rubbish. But so rubbish, it's really watchable. Just like Will and Kate the Movie. Dotted during this crap fest I eat as much food as I can, and work my way through all the physio and nebs and boring things like that. This lazy lifestyle is actually a pretty good way of making sure I do all my treatments. 

I'm not a fan of going out much these days - my crappy scarred liver and fat spleen have made it so I look pregnant, and have constantly low energy levels. It sucks. I don't go out unless i'm wearing a big baggy jumper, which as the weather is warming up, is making it harder and harder. So I stay home, be good, make sure my chest is tip top to deal with the upcoming transplant, and indulge in guilt-free slobbery. There aren't many times in life where that's acceptable, so i'm making the bloody most out of it. This is also why i'm up at 2 in the morning... I don't need to get up until 1.15, just in time for my Australian soap fest.