Territorial Pissings

I think I should do an updated version of my transplant for you all to read, a version where I pander to this attention seeking trend. I'll put in all the terrible parts, the parts where I was in tears both for pain and despair, and just how terrible I really felt. I don't write about that shit because thats just a part of it, of course you're going to feel terrible. But maybe if I did people would realise what I went through was huge. It was massive. But the fact I had a transplant that wasn't lungs seems to simmer down in the lowly ranks compared to the awe and glory those having lung transplants receive. When will people realise that CF isn't just about lungs? That a lung transplant isn't the hardest thing anyone with CF will contend with? Try having an operation just as big - arguably bigger (definitely bigger) - and have shit lungs to contend with. The narrow mindedness of some startle me. You may shit on me for saying this, but a lung transplant is piss easy compared to what i've been through. I wish people would realise this. It's one of my pet hates when people think CF in a lung condition. It's not. Now try having a 12 hour operation, another 4 hour operation, 2 general anaesthetics, 3 new organs, 4 months of recovery in hospital, all the time not being able to breathe. It'd be a breeze if you had sparkly new puffers to wake up to. I'll undoubtedly get slaughtered for writing this, but I actually don't care. I feel as if I had succumbed to this attention seeking-whoreish nature some have taken upon themselves, more would realise what I, and many others have gone through or are going to go through when livers pack up and die. Instead we're left with the same culprits and their hoards of fans who throw around words such as "inspiration" and "hero" at them, giving the impression they are better/ stronger (or sicker and more worthy of sympathy) than others going through similar situations, when in reality everyone, even those with lowly liver, pancreas, intestine transplants are equally as heroic. (We are! Though how it's heroic to not die is beyond me!) We ALL cope with shit, and arguably better than the ones who plaster it all over facebook and twitter just for the hundreds of comments that will come flooding in afterwards to boost their already inflated ego. I hope it fucking bursts.

My heart with pleasure fllls

The time has nearly OH SO NEARLY come when I soon will be set free on my Bambi limbs into the big, ginormous, schizophrenic spring-time London world. Bambi limbs? Whoami kidding, these bad boys have made me feel like a proud mother. (To be fair all my bits have filled with me a deeply unsettling maternal love otherwise only my cat can make me feel. Which in itself is profoundly disturbing.) See, i've been going to the gym. The hospital gym. I think for the first time, ever. There may have been a time maybe 5 years ago when I was dragged down kicking and screaming, but I think my memory has blacked that occasion out, as it does after any severe trauma. The only explanation I can think of for this significant turn of events is that my surgeon snuck in a new brain. Not that i'm complaining or anything, but you know, ethics etc. I do forgive him for this, because the one i've ended up with has this craaazy setting called "Omg, I love The Gym! Let's Work Out!" So I have! Yesterday, I was on a treadmill. And I was jogging, and butt-wiggle-walking, and jogging again, and jogging on a trampette like a total gym nut. Even as I'm writing this i'm wetting myself at the absurdity of this situation. Like, flooding myself. (Enough now.) But as soon as I wipe away the mascara-stained tears of laughter and control my bladder, an overwhelming swell of pride wells up within me that if I was another person, could actually start crying real, non-sarcastic tears of joy.

You see, not only are my muscles working again, my little lungies can cope with this massacre! I can do a good amount without getting puffed and sats dropping to 89 for a long while after, like before. In the last few days they've only dropped to 93 at the height of this physical (and mental - "YOU CAN DO THIS BITCH") onslaught, and have steadily come right back up after. I'm impressed. Like, crazy impressed. This transformation has happened so fast! I really thought my lungs would never be the same. I may be speaking too soon. I may be optimistic thanks to this weird day of spring sunshine. I may just be buzzing from the amount of coke i've steadily/ not so steadily (ie maniacally) drunk over the last week or so (I can finally have coke again eeeee). But caffeine, sugar and brain-tingling fizz aside, something is going right. I have a record low CRP (infection level) of < 1. That's less than one if my symbol skillz are correct. Like, wtf. Is that even possible? Am I dreaming? Um, am I dead?... Is this heaven?! ("omg Keats where are you!? I'm like totes your biggest fan!!)

Alive or dead, I would like to thank my saviour, Mr Mannitol. This little wonder drug not only helps, it MAKES me shift a hell of a lot of gunk that I didn't even know was there. Before, there was lots of gunk. Then, magically, there was none. Then I started Mannitol, and WOAH. Previously i'd have been wahay i'm gunk free! My chest is super! But this unearths all those hidden plugs that block the lungs that I had no idea about, and now they're exiting the building quick sharp. But not on a suffocating in gunk level, more of a managable, physio time-frame level. Apparently, this is what most of my other nebs should have been doing all along? Thanks, you LOSERS for NOTHING. The amount of hours i've puffed away on DNase thinking "I have the utmost faith in this invisible power that obviously works in mysterious ways..." Well, bull. OK OK it probably still does something mystical, I won't slate one of my many time-absorbing-shites too much.

Hi, this is your box of sugar

Hi, this is how you inhale sugar

Moving swiftly on. To the new bits. They're super. End of. Best blood sugar levels on the ward. Allegedly. And this new energy must be coming from Queen Liv II (hm, too much?), and it is now a noticable change - the daylight hours aren't shrouded in an inane sleepiness. Especially with the amount of gym slob i've been subjecting myself too. Super. Tum is staying the same size now - I suppose I wasn't expecting a washboard, it would have been silly to, but I dunno, I cant say im not a little bummed that it isn't. That would have been awesome. Still, it's about a million times better than before and at least everthing in there is fab. That (I know my mother would tell me to say) is the important bit. She's totally right.

So yes, all in all i'm really chuffed and slightly taken aback by the progress at this point. I had nightmarish visions of everything collapsing around me, unable to clamber up and out of a crappy chest that in turn would poison everything else. It still might, as is the nature of the beast, but right now I'm wallowing. And i'm not even home! I escaped for the day today and had a charmingly Wordsworthian day.

I wandered lonely as a cloud

That floats on high o'er vales and hills,

When all at once I saw a crowd,

A host, of golden daffodils;

Beside the lake, beneath the trees,

Fluttering and dancing in the breeze.

Continuous as the stars that shine

And twinkle on the milky way,

They stretched in never-ending line

Along the margin of a bay:

Ten thousand saw I at a glance,

Tossing their heads in sprightly dance.

The waves beside them danced; but they

Out-did the sparkling waves in glee:

A poet could not but be gay,

In such a jocund company:

I gazed—and gazed—but little thought

What wealth the show to me had brought:

For oft, when on my couch I lie

In vacant or in pensive mood,

They flash upon that inward eye

Which is the bliss of solitude;

And then my heart with pleasure fills,

And dances with the daffodils.

I've also just realised it's a year today since I was put on the transplant list. Food for thought, a feast for the heart. Crazy. 

Control, ALT, delete

YOUR OWN, PERSONAL, JESUS.


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

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

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

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

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

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

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

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

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

Out, damned spot!

It starts with a slight tickle in my throat. Then I sense an icy sharpness somewhere a little further down. Then I spontaneously cough. But it's not a normal cough. Instead of either a little bit of satisfying gunk popping up, or a reassuringly dry echo, it's thin. And liquid. And if my chest had eyes, i'd see it was red.

It's this succession of events that fills me with dread. Not in a Keatsian "this is my death warrant" kind of dread, more a "oh for fucks sake, not in public" kind of dread. Because when I start coughing blood, it doesn't stop for what feels like a lifetime. I can't do a big cough or a huff until whatever is there shifts, I have to wait for whatever torn blood vessel deep down in the fragile tips of my lungs clots. And the thing is my blood doesn't like to clot. Thanks liver.

So for the next 5 or so minutes I keep coughing, every few seconds. Bubble, cough, swallow, pause. Bubble, cough, swallow, pause. My inner vampire i'm sure relishes at this stream of molten rubies, but not even a disillusioned schizophrenic wannabe vampire can cast aside the disgusting clammy metallic taste and slimy consistency that i'm forced to swallow. Sometimes, if it's been going on for longer than I care to imagine, I grab a glass and start to watch the disturbing contents of my lungs fill it up. When this first started to happen a few years ago, I used to be in tears, thinking this was the beginning of the end. Blood being ejected from any part of the body is horrifying, it seems to trigger within people an extreme reaction of abject terror. Not surprising given it's our core, our unrelenting fuel.

It now doesn't scare me, knowing it's not too too serious, and probably (and like so many gory body things) because i've become so immune to anything remotely disturbing. It's not that it just doesn't scare me, when I see blood, it almost fascinates me. It's the oddest texture when it clots, like fast-setting Vampire jelly. And the colour is insane - the deepest red, so rich and regal. I suggested painting our bathroom that colour. Mum firmly said no. Pity, because it complimented the tiles just perfectly.

CF desensitises you greatly to things that might turn the stomachs of the general population with endless exposure of blood, phlegm, organs, bodily functions, and now transplants. You grow up talking about organs in terms of how they're functioning, what they're up to, why they're not working, how you can improve them. Bodies and all that goes on inside them become stuff of everyday banal conversation. Gushing blood, funny x-rays, CT scans of lumpy livers or increasingly scarred lungs become problems that need to be solved, shapes and shadows and highlights on a screen, rather than an invisible amalgamation of your 'essence of being' or some bollocks like that. Bodies are like machines, parts making up a whole. Bits and bobs, nuts and bolts. You see your body like a machine, you don't get scared when it starts to dribble oil. If something stops working, you try and replace it. I suppose it's a sort of uncanny detachment, a severing of the mind from the body.

This living hand, now warm and capable

Of earnest grasping, would, if it were cold

And in the icy silence of the tomb,

So haunt thy days and chill thy dreaming nights

That thou wouldst wish thine own heart dry of blood

So in my veins red life might stream again,

And thou be conscience-calmed—see here it is—

I hold it towards you.

                                                  John Keats

(See how odd that poem is? That's what i'm on about! An uncanny detachment from your body.)

Unsettlingly unfazed, alarmingly desensitized. I think this is why you'll find most CFers have a grotesquely dark sense of humour. I sure do, but i'm not sure whether the uninitiated public are ready for it. Should hear the 'jokes' thrown about in the safe confines of this house! I hate to say i've caused a few pale faces with my flippant remarks of very un-flippant things... Oops. I think it's the unknown that unsettles the most. Whoever said 'ignorance is bliss' was seriously mistaken. 'Knowledge is power' reigns in my kingdom. Knowledge calms, knowledge soothes, knowledge hands you the tools to understand what is going on in our intricate and amazing bodies. If you know, then it certainly won't be the fear that consumes you.

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.

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.

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.

:-/

Made (again) in Chelsea

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

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

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

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

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

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

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

A check up

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

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

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

Bubble Boy!

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


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

Lucky charms and starlight wishes

My nan died on new years eve last year. She lived in a scarily huge house in the center of Canterbury - stunning to look at yet crumbling on the inside. Ever since I was a kid the house has simultaneously mesmerized and terrified me. The grand staircase, the humungous portraits lining the yellowing walls, the labyrinthine corridors with secret hidden stairways leading to secret hidden rooms. Apparently there's a room without windows or doors somewhere in the middle that no-one has ever been inside. (Yeah wtf?) There used to be a huge dolls house in one of the upstairs bedrooms - when I was little I would creep in, re-arrange the delicate furniture, but after a short while run out spooked by the eerie silence... or maybe a creaking floorboard... or a spider. Wouldn't help coming face to face with this dark and sinister portrait of Napoleon that used to lean on the wall on the way to the bathroom, his eyes following me as I sprinted past, heart racing. Freaky shit. Anyway, the last 5 months my mum and her brothers and sister have been trying to clear the house.  The lady who came to take some things for auction apparently said to my mum "The only other house I could compare this with is Windsor Castle". LOLS. I'm trying to paint the picture of the size of this place, so when I tell you that the whole place, from top to bottom, was filled with a lifetimes collection of antiques, you'll understand the sheer scale of STUFF that was crammed in. The amount of 'antiques' that filled that house is ridiculous. It's a bit like those hoarder people's houses that've been on TV recently. Pretty sure they propped up the walls and that's the only reason it hasn't crumbled down yet. A lifetime of belongings that a lifetime of traveling and luxury has provided. In the process of riffling through the plethora of things, Mum brought back a few little things she found for me. This is one of my favs:

It's a chip from a Monaco casino where my nan and her hubby went on their honeymoon in the 40's. I don't know how much it's for - whether its a huge amount or not, but it's really beautiful. It has a lovely pearl shimmer to it, lined with little gold bits. I've sort of adopted it as a new lucky charm. Lady Luck. I wonder if it brought luck to my nan? Maybe that's why she kept it? A souvenir of an extravagant night on the Cote d'Azur. I want to turn it into a necklace or a bracelet, but of course would rather not poke a hole in it.

I'm not really a 'lucky charm' sort of girl, but since this transplant doo-dah I can't help but hold on to and wish upon little belongings for luck. I also end up creating and looking out for omens, signs and weird coincidences that may point to when i'll get the call. Apparently Freud used to be very superstitious when it came to numerical coincidences - he used to add up, divide, multiply important dates, meaningful numbers to determine when things might happen... including his death. Freud was sure he was going to die when he was 62. (Coincidentally, or not, the last two digits of his phone number). I did get a bit "oooh ahhh"-y when 40 days and 40 nights had passed - I couldn't escape all the Biblical connotations. Also when Prometheus the movie came out. The titan Prometheus stole fire from Zeus to give to mankind so as punishment he had his liver picked out by an Eagle everyday for eternity... Livers. Ooh. You can find patterns and meaning in anything if you're desperate enough!

I'm not religious - never have been. But it's times like these where you realize just why religion can be so important to people. The security it provides is unmeasurable; the comfort and support it can bring to people when they're unsure or worried or crave some feeling of being looked after is priceless. I've found myself wishing upon stars.  

Star light star bright first star I see tonight, I wish I may, I wish I might, Have the wish I wish tonight

 

It brings some sort of control to the uncontrollable, and that your life is not governed by luck or fate, but instead there is a higher power looking out for your every need. It's almost enviable to have complete faith and belief in something. Life might not seem to scary if you have faith that you're being watched over. I don't want to be religious - I hate what religion has become and what it does to families, to communities, to countries, to the world. My parents are both Northern Irish, and have seen what it can do. Religion as a social structure is not something I want to be apart of. But if from time to time I want to put my fate into another's hands, I choose the stars. It's a bit magical. They're eternal, but their beauty seems so ephemeral - so fleeting, so delicate. The way they glitter, the way you can't see them sometimes, but always know they're there. I know my little rhyme won't change anything, but I like going to sleep thinking maybe, just maybe...

It worked for him goddammit!

Moonrise Kingdom

Yesterday afternoon I saw Wes Anderson's 'Moonrise Kingdom'. GO SEE IT. It's gorgeous. Everything he does is gorgeous. I think it's the colours. Like when Dorothy steps out of her black and white house into technocolour and realises she ain't in Kansas anymore, Toto. The girl in the film also carries round a kitten in a basket through the wild forests, which is just way too cute. I think i'd like camping if it was like this film - if my cat would be willing to come with me, if I had a portable LP player, and had a proper Khaki Scout boyfriend to set up camp in such glorious places. Oh, and if I was twelve. In reality i'll just let Wes Anderson create my escapism for me, because life is never quite as pretty as his films. It just doesn't really match up, does it? It's like everything has been lovingly wrapped up in aging parchment, tied up with twine, and has a little hand written declaration of love hanging off the bow.

P.S. Why don't people write letters anymore?


But anyway last night was a joke. I think I drifted off to sleep around 3, but was up every few hours coughing and spluttering... too hot so I put the fan on,  then I was too chilly, then my light blew up, then my blood sugars were really high, then it got light, then my blood sugars were too low... I don't think I got very much sleep at all, and now I feel rotten. Thank goodness it's sunday so no-one has any expectations of doing anything productive. Not that I ever do anyway... I've asked dad to bring me back some cheapo fairy lights from Homebase so I can decorate the living room. They maaaayy end up in my room though. A gal can never have enough fairy lights!

Limbo

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

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


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

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


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

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

I have succumbed

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

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

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