Sleepy echoes of carnival and clubbing

BLURGH the last few days i've been completely shattered! When i'm more lethargic than normal there's a whole lotta things I look out for to determine the cause, but this time i'm completely clueless! It's a pain, because I just dont know how to fix it. I've had massive sleeps, eating loads, not sciving on meds, but it's a mystery. All I can think of is that it might be my liver being boring and eating up all my energy, but it's never usually this devilishly hungry.

I had an echo the other day, to check my heart. I think my gastro/ endoscopy doc wanted it checked because he said if I start bleeding again, it'll be from some other place inside (he seemed to know where, mr Psychic Doc). They'll then have to do a different procedure (ie not banding the varicies), and for that will need to know how my heart and veins etc are looking. He didn't go into much detail, but it seemed a little more serious than a simple endoscopy and tying a rubber band around bleeding blood-vessels in the food pipe. Eek! I hope I won't need to find out more about this enigma, and will get my new liver before things turn even more dire...! But my heart is fine, which is good to know! That day however, my mood was not, as the silly appointment was at 9 o'clock. That day felt so long! I would think it was tea time, but it was midday. I wanted dinner, but it was like 3. It was like some annoying eternal day. I suppose this is the real world, as opposed to my sleepy nocturnal world where the majority of it is in darkness. Made a change, and actually, despite that mini-rant, quite a nice one...!

It's been CARNIVAL weekend. Yes, Notting Hill Carnival is fantastic. I, however, spent it in my garden with my book, my cat, haribo, and ginger beer, listening to the neighbours and the distant boom of sound systems and hooting horns and police helicopters. I've had some fantastic carnivals (free rum punch!), but this year I gave it a miss. Too sleepy and didn't want to get elbowed in the spleen. Yoww. Tomorrow I may venture out to the food stalls, pick up some plantain and a coconut to drink, but i'll see. (Look at how cute my Sky cat is!)

Also made a discovery! The last few months i've thought my nails looked even more clubbed (ie rounded and bulgy). Clubbing is tres common in CF, but they were never this big and nobbly! So, my new discovery is that nails can also become clubbed with liver cirrhosis - CF or no CF! I'm now hoping post transplant they'll return back to their normal only slightly clubbed selves. I know I know they're only nails, but they're getting tricky to paint haha. And kinda uglyyyy. Also noticed it's technically called 'digital clubbing', which sounds all high-tech and made me think i'm totes cool. Down with the kids YA KNOW. Fancy a forest rave? Do the robot? Maybe i'll paint them in neon colours and start a CF 'in' joke.

Ew!

Cycling and Sirens

"Under the Westway... where I stood watching comets lonesome trails, shining up above, me the jet fuel it fell, down to earth where the money always comes first, and the sirens sing." 

- Blur, Under The Westway

I've been going cycling almost every evening. The days are too hot and busy, the night is just perfect. I've found a circuit that is almost completely car free - nearly 3 miles of weaving between estates, walkways under the Westway and quiet Notting Hill streets. The breeze is wonderfully cool, I can feel my puffers breathing in that night air, reaching new deep dark and dusty (gunky more like) depths. My leg muscles pump away, arm muscles reacting to every bump, even the ghost of my former six pack is stirring as my core tries to keep me upright, "remeeember meee" it croakily, fleetingly whispers in the wind.

It feels good. Even the wibbly wobbly jelly legs as I step (stumble) off is a reassuring sign that things are working - wasted lazy legs are waking. Hibernation is over suckers. One minute later they're fine. Tomorrow, they won't, as a faster, longer route awaits! I do a little cough, maybe a huff, shift a little blob. Not much to be honest. That's how I like it.

I like the distant roar of the Westway, the distant wail of the sirens on Ladbroke Grove, the distant rattle of the hammersmith and city line trains. I just like night time; stolen time away from burning heat and burning eyes. I'm only comfortable in jumpers, and jumpers in 30 degree heat is just bonkers. The darkness means I can also leave the house without a jot of make-up - I feel so liberated! Liberated and freeeee. My only restraint is to be back by 10 to watch Big Brother. And even that's on +1.

My red arrow route.

Redheads kicking butt

I'm not going to review every single film I see, but this one definitely deserves a mention! I went to see Brave with my mum (yeah, my mum. It's a very mummy/daughtery film), because being a redhead, how could I not. I want to support Disney Pixar's first ever female protagonist. First ever! I think it's ludicrous how Pixar, after what, at least 10 years(?) of fantastic films, have never had a female lead. Not very good. Big tut tuts. So, in this epic week of girl power (SPICE GIRLS FTW), Merida takes pride of place. And how perfect to have a lead who is a fiery, independent, beautiful redhead - about bloody time!

No way! I shoot arrows too!

What I was most moved by (yes moved, I was very emotional), was how unlike Disney princesses of yesteryear, Merida didn't need a prince. There was a happy ending, but that happy ending didn't revolve around her finding true love, getting married and all that traditional frankly outdated palaver. It was all about breaking tradition and controlling your own destiny - whatever you want that destiny to be. I can't help but feel a swell of optimism of how this young generation of little girls will grow up with role models like this - head strong, determined, courageous and independent, rather than the majority of princesses we were all brought up idolising - ones who, for them, only desired to find their Prince Charming. And not Princesses who are always pristine, neat and practically perfect in every way, with skin as white as snow, lips as red as roses... no, princesses with wild unruly hair that matches the untameable soul inside - a rugged natural beauty that stems as much from the outside shimmer as it does from an infectious spark within. I didn't need the 3D goggles to gauge how much depth Merida had - a multi-faceted diamond of a lass inside and out (the 'out' thanks to the incredible animators, seriously, wow). Did I mention she was a redhead?! Not blonde, not brunette, a redhead! Yes yes, there was Ariel, but c'mon, her hair was totally dyed. This was ginge. True ginge. I was bursting with pride!

As lovely Merida was big on escaping fate, and controlling her own destiny, I began to realise how far away from my normal self this transplant situation has made me. Normally, (blowing my own trumpet here) i'm quite similar to Merida (yay!) - I believe if you want something to happen you go out and you get the oil and you get those cogs moving, not relying on some external power to decide what will happen for you. But waiting for a transplant is different - you have no other option but to sit and wait. It's a disconcerting feeling of powerlessness. Yet on the other hand, because there is really nothing I can do to control what is happening, I can indulge in this guilty pleasure of pure passivity and let archaic and somewhat alien notions of fate and magic play with my thoughts (in case you haven't realised!). It's a bit of a treat. I'll chill out in this dreamy passive timeless frozen (almost)care-free floating bubble humming 'que sera sera' until my gaudy pink mobile rings and bursts it. Then afterwards back to reality i'll go, fighting fit and ready to shoot fate and destiny down with a well aimed arrow. I'll be so fed up of doing jack shit that i'll probably like, marry a prin... I mean, hunt down a job and a career! No rush though. This is kind of a biggie.

But yes, I want more princesses like her. We need more princesses, heroines, protagonists, role models like her. Pixar, you dun good. And it was funny too. But i'm never going to a PG film at the cinema again. So many crying babies and talking kids and kids eating and kids crying and mums shushing... argh. Kids.


I also want to mention my Podhaler. I've been using it nearly three weeks now, and it's really been quite life-changing. It takes a bit of getting used to because the powder can be really harsh on the back of the throat and makes me cough like crazy. But it's so quick - 5 mins tops, and because it's so speedy speedy, I find I actually take my Tobi much more that I used to. Before, with the neb, I used to sometimes not do it especially if there was no clean nebuliser bits or was in a rush to go somewhere, it just took so much time and effort. But that's not even an issue now, so i've hardly missed a single dose! To avoid the tickle and the coughing I often take a much more gentle breath in, which just means I end up having to take 3 inhalations per capsule rather than two to get all the powder. But that's no biggie.

If you CFers aren't too hot at always taking your nebs, I would recommend asking about and trying to get the podhaler - you might find you're more likely to take your meds more often. I'm always quite compliant with taking my meds, but we all have our off moments where we just can't be bloody arsed. I find I now have less of those, which both my conscience and i'm sure my lungs are very pleased about! I have it on good authority that my lungs are happy, as my lung functions at my 2 weekly hospital appointments (I know, 2 weekly, so lame) continue to get better! That is why I now kick butt, just like my on-screen doppelganger.

Clouds and beds and ducks

Have been at my gran's down in Sussex for the last few days, enjoying a mini holiday complete with seaside trip, pub lunches, country high street shopping, chips (lots of food full stop!), and a big fat double bed. I wish I had a double bed. It feels like sleeping on a big cloud where you can sleep in whatever direction you wish and everything you need can be scattered around the outside - books, jelly babies, phone, blue puffer... like some self-sufficient magic platform. Never need to get down. The amount of times I nearly fall of my single bed or have to like, you know, reach all the way down to get something. Honestly.

Tomorrow dad and I are off to Cambridge for a transplant check-up and ultrasound. Gutted that i'm not heading up there for a more exciting reason... oh well. It's an early start, actual early, not my-books-early. I want to be 51kg at least, but my recent eating drought probably won't have helped very much. Time to pile on the bling, Snoop Dog style. (He's hip hop, right? Doggy Dog.)

I now have a funny image of Snoop Dog sipping fortisips...

My spleen is sore. That's the only thing that ails me at this moment in time. But it's always sore. Tender is probably a more accurate way of putting it - it's uncomfy lying on my left side, and it's also uncomfy lying on my right because my ribs dig in and poke the bugger. I would lie flatter to stop the rib poking thing, but if I do I end up coughing blood which is just a nuisance so I prop myself up on this wedge thingy. Just so happens I bend in just the wrong place. I have this hug-a-pillow routine that seems to work, which I suppose also reveals some deep emotional stuff about me. Like a pillow fetish? Maybe it's my subconscious mind clamouring for feather pillows - that luxury that I used to indulge in until those ducks plotted their revenge and conspired against me to make me slightly allergic to their fluffy tufts. Win some, lose some.

But i'll sleep and probably dream of (hugging) David Gandy, mohitos and jetting off to Palau where the two former delights await me. Google image Palau. And David Gandy, why not. Everyone knows what a mohito looks like. Yes, then imagine all three together, and you have some insight into my brain. Golly what an insightful post about Laura's psyche!

A greek mythological feast

I've been slowly working my way through Robert Graves' Greek Myths. I've always loved Ancient Greece, especially the wealth of myths of heros and of gods, of creatures and of origins. But it was this book below that was my Pandora's box, though what was released was not all the world's evils - far from it.

Out jumped this fantastic world full of even more fantastic stories that has captivated me ever since. I read it in year 5 right after we did Ancient Egypt, and completely and utterly fell in love with all things Greek, and ancient. Odysseus became my 10 year old self's crush, even though this book made him out to be more like that equally as cunning and canny Bart Simpson rather than a true Greek Hero of Homer's vein. That was to come. (Pun completely intentional btw!)

In the interim came:

- Disney's Hercules. Just gonna put it out there - best Disney film. Who put glad in gladiator?

- I had this free Disney's Hercules computer game I guess from a cereal box, and messed about on that for years. I remember being chased by Titans on a volcano, and playing draughts with Hades' face on the pieces. High quality shit right there.

- Troy. Had the biggest crush on Orlando Bloom, though he was a horrific Paris and couldn't act to save his life. And HI BRAD.


Ancient Greece was a big love of the Romantic poets, so I was surrounded doing A-level English lit by poems and poems about all the myths I had grown to love. I'm not sure whether I came to love the Romantics because they wrote about Ancient Greece or the fact that the Romantics wrote about it made me love the myths even more... or whether all these loves of mine collided and hence exploded into some fanatic sized obsession that seems to just keep growing. Because add into the mix my love of pre-raphaelite art and we have some serious Big Bang expanding universe thing going on here. But first here's some links to some poems I absolutely adore. Click on them and read them, you won't be disappointed.

This is Ulysses by Tennysson. It is set when Ulysses (or Odysseus) is an old man, as he reflects on his life. From when I first met Odysseus as a little boy in Tony Robinson's book, to these last days of his life as seen by Tennyson, this poem, I think, captures wholeheartedly that infectious and vibrant spark Odysseus has always had, as he is saying even if time and fate have weakened me, my mind and my 'heroic heart' will never tire and never yield. I love you Odysseus! I want to be like you!

This poem is also by Tennyson and is called Tithonus. Tithonus was granted immortality so he could be with his lover Eos, goddess of the dawn, yet he was not granted immortal youth so he endlessly ages. In the poem he watches Eos as she rises and sets everyday, un-aging and forever beautiful, whilst he withers and crumbles - a 'grey shadow' of a man. My heart aches in sympathy - it's so so sad yet so so beautiful. "Why should a man desire in any way to vary from the kindly race of man?" I read this, and I realise: not me.

Keats' Ode on a Grecian Urn raises questions on immortality, mortality, art - quite similar to Yeats' poem in this blog post. I love the moment about the two lovers on the urn about to kiss but never able to - 'winning near the goal' - but they shouldn't be sad because 'forever wilt thou love and she be fair!'. As my english teacher said, they never have to experience 'all the annoying parts about dating and kissing and sex, like getting all sweaty'. It was a very cringe moment.

Finally, another one by Tennyson. Yeah, he was a bit obsessed, but damn good at it all so much forgiven! This is called The Lotos-Eaters, as is about when Odysseus and his men stopped at an island inhabited by 'lotus eaters'. The lotus fruit the men are fed is a bit like some of those Chelsea and West sedatives - makes you sleepy, happy, and forget about everything. This will sound a bit school-ish but I think is fascinating and oh-so clever: as the poem goes on the structure, rhythm and rhyme changes, and ends up in a lulling 'choric song' (that even has to be numbered, bless) as the men slip into a unified lazy slumbery druggy chant; very different to the beginning where "COURAGE!" alongside strength and determination is practically shoved down your throat like some over-ambitious American 'hockey mom'. Don't take drugs, kids. (Unless you have Odysseus to drag you away from 'bad influences'.)


A few summers ago I went to the Waterhouse exhibition at the Royal Academy - I made mum book tickets as soon as I heard it was coming because I knew I would never forgive myself if I missed it! Waterhouse, as well as taking inspiration from the poems of my favourite poets such as Keats, also painted mythical scenes, and oh my jeeez, I've never been so awe-struck walking round an exhibition. Sounds silly, but I really was. Painting after painting was a perfect, beautiful representation of Homer's tales, so completely epic yet delicate at the same time. It's like he had captured the magical, intangible quality of myths and folklore, yet had given them all the gravitas, solidity and grandeur that myths inherently possess. So here are some pics, not just by Waterhouse, inspired by greek mythology. I like it when you find two different interpretations of a myth or a poem, just to see how different painters approach the subject.

'Circe' Wright Baker

'Ulysses and the Sirens' Herbert Draper

'The Siren' John William Waterhouse

'Ulysses and the Sirens' John William Waterhouse

'Circe offering the cup to Ulysses' John William Waterhouse

'Circe Invidiosa' John William Waterhouse (This is also my bookmark!)

Doing a little more reading earlier, I was drawn to the section about The Fates. Now as i'm not religious and so don't really want to pray to god or anything regarding transplants-hurrying-the-fuck-up, I decided I could try turning to the Fates. The Fates, or the Moreae, are comprised of Clotho (the spinner), Lachesis (the measurer), and Atropos (the cutter), with Atropos being the most deadly as she is the one who decides when your thread of life is to be chopped! Apparently, not even Zeus is immune from the Fates' devious fingers. But I can't really ask for lovely Atropos to cut someone else's golden thread thanks dear, that's just sick. It's not my life they're contemplating just yet...

Then there's also Tyche and Nemesis - Tyche is the holder and therefore provider of luck and fortune, but who deals out this good fortune in a haphazard manner. I'm a fan of this sense of equality and fairness in receiving good fortune - if only religions were as blind. Nemesis means 'to give what is due', and therefore if the beholder of Tyche's luck does something to render this luck undeserved, Nemesis makes sure that person receives some form of divine retribution or punishment. So here's me hoping Tyche's spinning ball lands on my number soon, and that Nemesis thinks i've been an allright kinda gal and doesn't inflict rejection or an un-shrinking spleen or any nasty transplant complications upon me! After all, what had Prometheus also put inside Pandora's box on the off-chance that it would be opened? Hope. And that's what I got baby!

'Justice & Divine Vengeance Pursuing Crime', by Pierre Paul Prud'hon

I hope this has been interesting, or at least re-ignited your love of Disney's Hercules. I now have all the songs stuck in my head... damn it! ("And then along came ZEUS")





("Zero to hero, just like that!")

Amaretto Marshmallow

Endoscopy was completely fine. Camera in, camera out. No banding needed, and the angry inferno left in the wake of the previous one had (from what I can recollect thanks to the sedatives' amnesiac properties) all settled into a much more tranquil and heavenly looking place. If oesophegus' can ever look that pretty. Ha.

What I didn't know is that you can be given a sedative reversal drug, meaning that walking out of Chelsea and Westminster I looked pretty normal, as supposed to a looking like a crack-head somnambulist. Still a little sleepy, and gosh I hate to think what my hair looked like (these days it's shocking at the best of times. Bloody vitamin deficiencies making it go all thin!). Despite this, I felt well up to making the most of this beautiful sunny day! Caramel coffee frapaccino in hand me and mummy hit Kensington High street with the sole intention of finding trousers. I have ONE pair of trousers I wear. The only ones that do up. And they're not that nice to be honest. I'm now the proud owner of two more that shock horror actually do up! Still a little baggy because my legs are stupidly skinny, but it's progress. And they're not black. I brought maroon jeans, and cream jeans with pink flowers on which I absolutely love. And two baggy tops. Blue and maroon (again). Yeah I like maroon. Thank you H&M!

Of course I also treated myself to TWO(!) mascaras and eye liner and two nail polishes (amaretto and marshmallow) and body spray and cotton buds. Yay cotton buds.

My jeans!

My marshmallow nails, with added doodle

And now i'm going to go to bed because I woke up a full 6 hours before what I deem a suitable time to get up. (Anytime after 1. Tough life. ) And i'm shattered!




Next endoscopy appointment: 6 MONTHS FTW!

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...

Poetic musings

With the sun out in full blast, and the temperature reaching nearly 30 degrees, I thought now is a fitting time to share these two poems. The latter is, I suppose, sort of a response to the former. Coleridge's is my dilemma at the moment, a body as a prison. A big fat liver and spleen keeping me hostage. I want to go do stuff in this lovely summer weather, but feel a bit tied down, just like Coleridge with his poor injured ankle while his mates gallivant off without him. He surmounts his entrapment with the imagination - that Romantic powerful imagination that allows an escape from all earthly woes. Yeats on the other hand, seeks an immortality to match that of the soul, and finds this in art. Both recognise the body as a weak link - we are more than just a body, a weak body at times, a body that doesn't even come close to realising all our desires, wishes. Our soul, the essence of US is made for better, stronger, more powerful vessels - why is it that our bodies should fail and falter whilst the soul is immortal? As Yeats so beautifully puts, we are fastened to a dying animal. I don't really believe much in this immortal soul, but I suppose it's all just a bit of poetic license to say this: why does our bodies put a time limit on us? I don't believe a soul is a separate entity within us, but I do believe that it isn't fair that disease in any form should hinder our lives - hinder what our minds want to achieve. Anyway, read these poems, see what you think. They sound beautiful too, and that's a big part of why poetry is, well, just luvely. (Soz they're long.)

This Lime-tree Bower My Prison, S T Coleridge.

Well, they are gone, and here must I remain,

This lime-tree bower my prison! I have lost

Beauties and feelings, such as would have been

Most sweet to my remembrance even when age

Had dimm'd mine eyes to blindness! They, meanwhile,

Friends, whom I never more may meet again,

On springy heath, along the hill-top edge,

Wander in gladness, and wind down, perchance,

To that still roaring dell, of which I told;

The roaring dell, o'erwooded, narrow, deep,

And only speckled by the mid-day sun;

Where its slim trunk the ash from rock to rock

Flings arching like a bridge;—that branchless ash,

Unsunn'd and damp, whose few poor yellow leaves

Ne'er tremble in the gale, yet tremble still,

Fann'd by the water-fall! and there my friends

Behold the dark green file of long lank weeds,

That all at once (a most fantastic sight!)

Still nod and drip beneath the dripping edge

Of the blue clay-stone.

                        Now, my friends emerge

Beneath the wide wide Heaven—and view again

The many-steepled tract magnificent

Of hilly fields and meadows, and the sea,

With some fair bark, perhaps, whose sails light up

The slip of smooth clear blue betwixt two Isles

Of purple shadow! Yes! they wander on

In gladness all; but thou, methinks, most glad,

My gentle-hearted Charles! for thou hast pined

And hunger'd after Nature, many a year,

In the great City pent, winning thy way

With sad yet patient soul, through evil and pain

And strange calamity! Ah! slowly sink

Behind the western ridge, thou glorious Sun!

Shine in the slant beams of the sinking orb,

Ye purple heath-flowers! richlier burn, ye clouds!

Live in the yellow light, ye distant groves!

And kindle, thou blue Ocean! So my friend

Struck with deep joy may stand, as I have stood,

Silent with swimming sense; yea, gazing round

On the wide landscape, gaze till all doth seem

Less gross than bodily; and of such hues

As veil the Almighty Spirit, when yet he makes

Spirits perceive his presence.

                        A delight

Comes sudden on my heart, and I am glad

As I myself were there! Nor in this bower,

This little lime-tree bower, have I not mark'd

Much that has sooth'd me. Pale beneath the blaze

Hung the transparent foliage; and I watch'd

Some broad and sunny leaf, and lov'd to see

The shadow of the leaf and stem above

Dappling its sunshine! And that walnut-tree

Was richly ting'd, and a deep radiance lay

Full on the ancient ivy, which usurps

Those fronting elms, and now, with blackest mass

Makes their dark branches gleam a lighter hue

Through the late twilight: and though now the bat

Wheels silent by, and not a swallow twitters,

Yet still the solitary humble-bee

Sings in the bean-flower! Henceforth I shall know

That Nature ne'er deserts the wise and pure;

No plot so narrow, be but Nature there,

No waste so vacant, but may well employ

Each faculty of sense, and keep the heart

Awake to Love and Beauty! and sometimes

'Tis well to be bereft of promis'd good,

That we may lift the soul, and contemplate

With lively joy the joys we cannot share.

My gentle-hearted Charles! when the last rook

Beat its straight path along the dusky air

Homewards, I blest it! deeming its black wing

(Now a dim speck, now vanishing in light)

Had cross'd the mighty Orb's dilated glory,

While thou stood'st gazing; or, when all was still,

Flew creeking o'er thy head, and had a charm

For thee, my gentle-hearted Charles, to whom

No sound is dissonant which tells of Life. 

Sailing to Byzantium, W B Yeats

THAT is no country for old men. The young
In one another's arms, birds in the trees
- Those dying generations - at their song,
The salmon-falls, the mackerel-crowded seas,
Fish, flesh, or fowl, commend all summer long
Whatever is begotten, born, and dies.
Caught in that sensual music all neglect
Monuments of unageing intellect.

An aged man is but a paltry thing,
A tattered coat upon a stick, unless
Soul clap its hands and sing, and louder sing
For every tatter in its mortal dress,
Nor is there singing school but studying
Monuments of its own magnificence;
And therefore I have sailed the seas and come
To the holy city of Byzantium.

O sages standing in God's holy fire
As in the gold mosaic of a wall,
Come from the holy fire, perne in a gyre,
And be the singing-masters of my soul.
Consume my heart away; sick with desire
And fastened to a dying animal
It knows not what it is; and gather me
Into the artifice of eternity.

Once out of nature I shall never take
My bodily form from any natural thing,
But such a form as Grecian goldsmiths make
Of hammered gold and gold enamelling
To keep a drowsy Emperor awake;
Or set upon a golden bough to sing
To lords and ladies of Byzantium
Of what is past, or passing, or to come.

U-tops and Dys-tops

I love Dystopias. I love Utopias. I did a course at uni about utopian and dystopian literature, and i've been obsessed ever since. I think it was the only course I actually read every single book on the reading list, plus more. I think what fascinated me the most was how the line between utopia and dystopia is not so clear cut, and how one can so easily merge into the other. It raises philosophical and moral debates that sometimes, you just can't answer. Happiness at the price of freedom anyone?

This is my list of my favs. Read them!

The Republic, Plato. OK, was made to read this one at uni. And I know what you're thinking. Plato? WTF? But this is the bedrock of all Utopian Lit. Plato has created his 'perfect' society. But is eugenics, sterilization, heirarchys and an intellectual elite really a Utopia...?

Gulliver's Travels, Swift. As Gulliver encounters all these weird and wonderous different worlds, each questions our own society and our own ideals, and actually whether our pursuit of perfection comes at a price. A master of critique and satire. Now let's extract sunbeams from cucumbers! Loved this book ever since that TV version in the 90's.

Erewhon, Samuel Butler. An anagram of 'nowhere', this Victorian satire presents a backwards place where for eg. criminals are treated as ill and the ill are treated as criminals. The most amazing part of the book is the last section, 'Book of the Machines' which is a scarrily accurate pre-curser to A.I - all machines have been destroyed as they thought they would develop a consciousness and take over...! You start to believe it. Now relevant more than ever. So glad my brother got this for me from the school library clearout. Good brother.

The Time Machine, H. G. Wells.  Set in the future in a world full of perfectly beautiful 'people' (the Eloi), but hiding a sinister underbelly, literally. 

1984, Orwell. BIG BRO IS WATCHING YOU.

Brave New World, Huxley. Artificial, drug induced happiness at the price of personal freedom? Very similar to Plato's Republic (yeah I wrote one of my dissertations comparing these two) - but one classed as a utopia and one as a dystopia. Which side are you on?

News From Nowhere, William Morris. Written in 1890 and set in London around NOW (!), this is Morris' ideal socialist utopia where London is a big happy rural place, no money, just trading, and the houses of Parliament are a place to store horse manure (lols). Would this ever work, or is it just a rich arty farty man's dream? Would you want it to work?!
 
Metropolis, Thea Von Harbou. A seemingly beautiful urban city full of the elite, yet powered by down-trodden workers. Echoes of The Time Machine. What is the price of creating a Utopia? Lots of Hitler overtones. The 1920's film by Fritz Lang is fantastic, with Von Harbou, his wife (aw bless), writing the screenplay. 

Herland, Charlotte Perkins Gilman. Women only world. No men! :-O So no war, no dominance, no conflict, no angst, and lots of artificial reproduction. A feminist paradise. But, of course, dark and questionable undertones.

The Trial/ The Castle, Kafka. Anything by Kafka is disturbingly dystopic. These two novels are perfect examples of the consequences of extreme bureaucracy, and one man's plight against the system. A nonsensical system that is.

WE, Yevgeny Zamyatin. This book inspired Orwell and Huxley to write their dystopias. The Daddy of the modern Dystopia. Love how everyone lives in completely glass flats, so everybody can see everything. You get dedicated 'sexy time' where you're allowed to close the blinds hehe. *Awkward much*


I really want to read:

The Drowned World, J G Ballard. Another novel set in London, this time in a Global-Warming heated up world. London is a tropical swamp, no polar ice caps, no-one lives around the equator. The Sun is close to earth in a sci-fi take. I think it's not so much as a utopian or dystopian social critique, but is definitely a dystopia!

The Island, Huxley. Huxley's take on a Utopia this time. Wonder if it'll stay a utopia... doubt it.

The Sleeper Awakes, H. G Wells. A man wakes up in the future, just like Morris' News From Nowhere.

Fatherland, Robert Harris. If Hitler had won the war. Hitler obviously was wanting to create a utopia by eliminating all what he deemed 'unsavory' within society. I imagine this finalised vision, and if you imagine it in real life, would be a perfect example of an extremely dystopian 'utopia'. When you think of trying to create a utopia in real life as opposed to fiction, it really is quite a terrifying concept. Paradise at a high price - a price that any sane man or women would never pay. I just don't think creating a complete utopia is ever possible. You have to destroy and eliminate too much, and there is absolutely nothing perfect about that.



Tell me of any sort of utopian or dystopian books you've read and would recommend! Any books that are set in a world that might seem perfect or really really awful. And, if at any point you thought 'actually, this bad world ain't too bad' or 'this ain't perfect you dumb ass!'

I read normal books too. I've read Twilight.

Clinic, podhaler, and CAKE

Just typical. The day I have clinic, I have the WORST COUGH EVER. Today, fine. Brilliant. Nothing there. Clear as a mountain spring. Well, sort of. But yesterday I was all a rumbling-and-a-wheezing-and-a-gunky-and-a-spluttering. Did a terrible lung function (40% and 60% PAH, normally 60% and 75%), sats were 92 (they're always 98) and, well, it was a disaster. I saw my favourite consultant Dr Bilton, who basically got me on the road to liver transplant a few years ago, and who's buddies with all the team up at Addenbrookes. I told her how Chelsea and Westminster 'stole' my DNAase, and haven't had any for 2 weeks, but that i'm finally able to collect it from my chemist tomorrow (today). AND how I stupidly (not so stupidly if it's shifting shtuff) had a hypertonic saline (yuk) which has just unearthed a whole heap of hidden monsters from the deep, and that are refusing to calm the fuck down. Not in those words. She's given me 5 days to get better with Cipro too, otherwise.... IVs. Oh how my heart sank. Basically, if I have an inpatient stay because of a bad chest and IVs, i'm taken off the list. And today i've hit the 3 month milestone. I do NOT want to be off the list at this moment in time. I've hit the average wait time! Equally, I don't want to go ahead with a transplant if i'm run down because that wouldn't be wise at all, so my only option is to work my boney butt off to kick this cough. A cough that today, seems to be non-existent... Still, knowing coughs, it's probably lurking in the depths, fooling me into believing it's gone, when in fact it'll pounce when I least expect it and come and bite me in the skinny bum of previous sentence.

Also, I got my tobi podhaler! During my trial run yesterday it made me cough like hell - tobi through the eflow is awful (that's why I use my fat old machine instead), but this is the same potent powdery strength in one inhalation. I say one, but actually you do 8 breaths - 2 breaths for every capsule. So it's not quite as quick as a puff of a blue or red puffer (or brown or green - I know they exist), but still, no washing! No sterilizing! No fridge! No nebuliser! AND they deliver it every month to your home! Incredible. For those not in the know, it means about an hour kicked off my daily routine. GET IN. My dilemma now is whether I continue with my colomycin neb until the end of the month, or succumb to my excitement and start the podhaler NOW! I think I might wait. I'm a good girl you see... sort of. The thing is, now it looks like I leave a sex toy round my house, and i'm totally nonchalant about it. Good girl gone kinky.

Pictured on bed. See what I did there?!

Today I have a dead arm as a whole load of gloopy vitamin A was injected into my poor wee arm as well yesterday. It's a painful jab because of it's thick consistency - you can feel it just sitting under your skin like a fat man at McDonalds, knowing he should probably get on with his day, but being too fat to actually move anywhere. Or anywhere fast, at least. Eventually the orange flubber vitamin disperses and the acute achey pain subsides, but you're left for at least a whole day with a dull ache - a disturbing memory of sludgy fat man at Maccy D's and his jiggling fat rolls. But at least things will be brighter from now on. Literally. Night blindness is a frickin' nuisance. Everything looks dark and orange. You can't walk about at night, you can't see stars, you can't see much to be honest!

Now i'm off to finish my Victoria sponge cake. I didn't make it, it's from Sainsbury's. But it's taste the difference so I like to think it's been lovingly made. That counts as working hard to fight an invisible cough, right?

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!

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. 


:(

Quickie

Just a quickie post - off to the Brompton tomorrow afternoon (Friday) for what is technically my 'annual review clinic visit' thing, even though I saw the docs when I had my annual review about 6 weeks ago.

I'm hoping they might start me on some osteoperosis drugs - my bone density scan came back pretty shocking - my poor brittle bones! Given they hadn't booked me for a scan in about 4 years i'm quite annoyed - they could have given me something to prevent this!

I also really want to ask about this Tobi inhaler - I nebulise Tobi twice a day alternating with colomycin every month, and even though the half an hour nebuliser lulls me to sleep every time (pretty blissful), it would be fan-bloody-tastic just to have an inhaler! I think there might be a colomycin one too...!

Pretty sure my weight has plummeted during this rocky two weeks, and I even have some sort of feverish thing which has demolished my appetite. It's been horrid - since monday i've been freezing cold, boiling hot, headachey, sleepy, and no appetite. I'm on extra cipro and I very rarely tend to become feverish with an infection so i'm hoping it ISN'T an infection... maybe I caught old granny germs from Chelsea and West. I have all my fingers and toesies crossed that they won't keep me in for IV's because that would suck balls.

But i'll put up a cool, calm and collected fight - Laura style - I'll talk steel if they want me in while maintaining this charming and polite exterior. Bat some eyelashes too. Maybe? At least i'll make them wait until my 3 weeks of cipro is up - buy me some time while I frantically beat all the gunk outta me and spend every meal time at McDonalds! That should do it.

:-/

To sleep: perchance to dream...

My sleeps have not been peaceful ones lately. It often takes me hours to fall into a slumber, only to wake every few hours with a cough, a low blood sugar... or to be startled awake by some uncomfortable dream. After tossing and turning, after the night sky I can see through the gap in my blind slowly turns violet to grey to blue, after silly scenarios run through my head, I eventually drift off... only to be woken again by a cough, or a low blood sugar, or the padding about of next doors kids. As these tiresome nights drag out in front of me I hope so much that sleep will just come and engulf me and whisk me away to a silent restful haven. I used to wish to have lovely dreams, but now I just wish for an almost deathly silence where my thoughts are locked away allowing me a blissful, tranquil rest.

I don't normally get this wish. The other night I dreamt I got my call from Addenbrookes, but somehow I worked out I had half an hour to kill footling round the house. After 25 minutes had passed on this little countdown timer I placed in my room, I suddenly realised I hadn't even packed! Then came a frantic 5 minutes trying to work out what to bring, but I was in a mood (that I can only compare to having a low blood sugar) where I couldn't make any decisions, and just ended up following my mum about in some hazy crazy daze. I woke up all worried (because to be honest, I haven't really packed everything...) and it took ages for my heart race to return to normal.
 
I have a poem that I wrote out about 6 years ago blu tac'd to the wall right beside my pillows. It's called 'To Sleep' and it's by my favourite poet in the whole entire universe - Keats. After nights and nights of reciting this poem I know it off by heart, and even though the felt-tips have long faded away, I still look at the pale outlines of the letters and repeat it; the mantra of my bed-time routine.

O SOFT embalmer of the still midnight!
Shutting with careful fingers and benign
Our gloom-pleased eyes, embower'd from the light,
Enshaded in forgetfulness divine;
O soothest Sleep! if so it please thee, close,
In midst of this thine hymn, my willing eyes,
Or wait the amen, ere thy poppy throws
Around my bed its lulling charities;
Then save me, or the passèd day will shine
Upon my pillow, breeding many woes;
Save me from curious conscience, that still lords
Its strength for darkness, burrowing like a mole;
Turn the key deftly in the oilèd wards,
And seal the hushèd casket of my soul.

It's this silent sleep that I so crave. I love every line of this poem - Sleep is this embalming figure, completely wrapping you up and protecting you by locking your soul away from wiggling moles of conscience who bury and dig their way into your mind as you sleep, filling you with thoughts and worries. How beautiful does a hushed casket for a soul seem?! I see it as a warm and cosy den filled with humungous marshmallow pillows and fluffy sumptuous duvets and hanging purple gold and maroon drapes, completely cocooned away. Forgetfulness divine!

Of course, sleep never quite seems like this. Maybe once in a while Keats' poetic vision will materialize, but you always take a gamble. If you manage to dodge the nightmares however, a dream filled sleep can of course, be just as wondrous. "To sleep: perchance to dream... ay, there's the rub". "For in that sleep of death what dreams may come?" - take away all the suicide and death, and Hamlet has a point. He of course was pondering whether his mortal anguish will dissolve in death - me, i'm just wondering whether my mortal anguish (if you'd like to call it that) will be left in reality as opposed to my dreams. I'd love to not have to worry about transplant stuff in my sleep as well as in my waking life. You hope your dreams will be an escape from day-to-day life, but in reality, it's not always like that. Boo.

No matter how weird my dreams are, you can always tease out an immense amount of truth from them. Dreams can seem so muddled, random, distorted, odd... but in the early morning post-mortem of these weird visions, they paint such a clear picture of your mind. It fascinates me. There are no lies within dreams it seems. The tangled, if not chaotic sub-conscious thoughts weave themselves into an even more chaotic tapestry, yet through the seemingly tangled strings, you can tug and tighten them until the most detailed and precise picture emerges.  You can pretend to feel certain ways, but my dreams always point out exactly what my mind feels. I always say i'm not very worried about the transplant, but going by the number of unsettling dreams i've had regarding it (there was one where they were going to put rashers of bacon in me...), obviously, I am! I just wish they'd calm down a bit. Leave me in peace. If anything, so I at least I have the strength to deal with it the next day...

...And to get over this wee cough that's creeping up on me. Nasty bugger. I had an amazing nursery tea of gammon, bacon, chips, and topped with a fried egg, so hopefully all that salt and calories and fatty goodness will boost me up, especially after days of feeling pretty crappy. Knock this little infection on it's head before it's slimy mits take hold good and proper. POW.