Monday, 30 July 2012


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...

Tuesday, 24 July 2012

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.

Sunday, 22 July 2012

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. 


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.

Wednesday, 18 July 2012

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?

Sunday, 15 July 2012

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.

Wednesday, 11 July 2012

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!

Tuesday, 10 July 2012


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.


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


Saturday, 7 July 2012

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 -


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.

Sunday, 1 July 2012

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.