Fear No More

"'Fear no more the heat o' the sun, Nor the furious winter rages.' This late age of the world's experience had bred in them all, all men and women, a well of tears. Tears and sorrows; courage and endurance." 
Mrs Dalloway


It is almost a year ago since I said goodbye to CF related diabetes, yet the ward round at Addenbrookes on the second of January delivered a blow I had been dreading, a fear that since my parched and thirsty christmas had shadowed every thought. My immune system is attacking and destroying my islet cells: I have Type 1 diabetes. Through tears I bombarded the consultant with question after question...plasmapheresis...more immunosuppressants... yet the answer remained stoically cold: "there's nothing we can do". These tears drowned me for the next three days, my bay in Cambridge through my eyes uncannily reflecting Alice's drowned world, a salty sea of despondency. Like the last year hadn't existed, back into my life seamlessly appeared the bright orange pens of novo rapid, and the piercing monstrous green of the new beast, Levemir. Soon my bedside was littered with needles and plastic casings, piling up around me as I lay, maudlin and blurry eyed.

Back to the Brompton I returned, a few days later, from where I had started on the 27th. My Chelsea Pad brought me a welcoming solitude, high up and far from questioning voices and concerned parents. The western sunsets each night followed by the infinite cool and intriguing night skies followed by the dreamy sunlight and morphing cloud formations brought me my transcendence from hospital and bodily woes; I would sit, lean, stare, and think...with headphones on, out of the bay window that offered the same comfort way back in April after my transplant. I would stare at the same planes - the same twinkling planes and twinkling stars that I saw back then that would calm and soothe and transport me far away..., yet now I couldn't help and compare the joy I felt back then on receiving such majestic sights - the hope, the excitement, compared with the greyness now that was hindering my vision. Yet the tumultuous night wind would whistle through the gap, calling... opened it would heave through the wide open window and dance around the cobwebs of my mind, scuttling the spiders out; grabbing me and whirling me into the infinite possibilities of life outside my four hospital walls. I will always be content with a view and a breeze.

Dizzy Ravine! and when I gaze on thee
I seem as in a trance sublime and strange
To muse on my own separate fantasy,
My own, my human mind, which passively
Now renders and receives fast influencings,
Holding an unremitting interchange
With the clear universe of things around;
(Shelley, Mont Blanc)

My liver is still perfect. Livers are the most robust organ to transplant, the pancreas (the Islet cells that produce insulin especially) the least. Liv II is still happy and content in there, more than ever. And the rest of the pancreas works - my digestion is perfect and I still don't need enzymes to digest food. I blew my best lung function in living memory - my FVC now 87%, which was a desperately needed ray of sunshine in these dark January days. These aspects of my health are again overshadowing my set back, the numbness that consumed fading and the normal Laura appearing again.

Back home and life is kicking in, a stream of people and things to distract from that torturing stillness that only perpetuates melancholy thoughts. In the hustle and bustle of living insulin is once again just one little part of my life, meaningless and trivial next to happiness... drunkenness.... As much as my solitude and rendez-vous with my thoughts and imagination was needed and rather invigorating, I am embracing all the distractions life has to offer, to escape the reality that haunts the stillness of my mind. I'm now dissolving in Mrs Dalloway's thoughts instead, and am overcome by the beauty of Virginia Woolf's writing. She's a true poet writing through prose; I've marked down every other page, marking passages that overwhelm me with their truth or their beauty, or both. Im now starting to think it'd be easier to mark down the pages that don't contain something of note. She's such an ace reflector of consciousness and thoughts, writing with as much beauty as Shelley or Keats the workings and wonder of all her characters minds, with such acute accuracy and poetic poignancy that you feel she's reached deep inside your mind and has described emotions, thoughts and feelings you'd never even registered before yet ring so true.

I'm grateful to have such a loving network around me when things get a bit shit, I've had a stream of visitors, calls, texts, messages, outings... fun distractions is what it's all about. Keats' "O! For a life of sensations rather than thoughts" has never seemed so relevant - I'm off to live, to explore, to experience... and overpower and forget about (temporary) debilitating set backs with an onslaught of hardcore joviality.




"Fear no more, says the heart, committing its burden to the sea, which sighs collectively for all sorrows, and renews, begins, collects, lets fall."

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. 

The birth and aftermath of Liv II et al

(OK I wrote this last week, pretend it's a week ago. I'll then do a new update!)

March 27th
So, I’ll give you a quick update on where I stand right now. At the moment I’m down on the Dialysis ward, receiving this funky, amazing and expensive two week treatment; my antibodies aren’t really liking my new bits, so i’m halfway through the two week process to rid my blood of them. It’s an immuno-absorption process I believe called plasmapheresis (so many names have been thrown about), where my blood is taken out, the plasma (that holds all the antibodies and other proteins and blood-things) is filtered of my antibodies in this massive machine, then flows back in. After the 3 hour treatment I’m given IV immunoglobulin (with a whole heap of other goodies before to stop any possible reactions/ nasty feelings), which contains a fresh batch of new antibodies, no liver hating ones to be seen!

Excited first time! Hi steroid face

Vampire machine getting boring... same t-shirt, nice. 

This was almost the last resort after the hell load of steroids that turned my face into a colossal mass, plus escalating amounts of other immuno-suppressants failed to sort out my pesky volatile white blood cells. Apparently I have a “robust immune system”, which in any other circumstance would be a major FTW moment, but sadly not post transplant... It’s done me well has my immune system, and I apologise (to my chest as well)! for wiping you out.

Day 4 into this treatment I took an awful reaction to something, and had 2 days of feeling SO sick - a flu-like, nauseous, intensely headachey, can’t look at lights, sicky sick.  Not since Jonathan’s birthday party when I was 7 have I felt so sick (there was glue / fairy liquid eating I seem to remember...) I was so tentative this morning about trying again, but it was decided it was probably a reaction to the citrate – an anti-coagulant thing they push through at the beginning. And voila – now, 45 minutes in and without any citrate being used (heparin instead), I remain fine – albeit some sore fingers from having them crossed since I was informed of this un-nerving plan to try again!

I have 4 more sessions of this, and then hopefully, if it will have worked, my body won’t reject my fab new organs and I can FINALLY head back to home sweet home. As much as the idyllic country view out my window is gorgeous and serene and really quite purdy, it ain’t home. If this treatment doesn’t work, they might take my spleen (a.k.a white blood cell training camp), then who knows how much longer I’ll be looking at fields for... Regarding the spleen, the previous source of all my cosmetic woes: before I would have been like HELL YEAH hello flat tummy, but now I really don’t want more surgery, it’s proper tough and everything takes such a beating. My kidneys failed, you can’t move, every inch of you is sore, you turn into a bag of bones, my chest has only just escaped from some dire stage - i'm only off 24/7 oxygen as of last week. However, as of 2 weeks ago it’s shrunk from 23cm to 17cm, possibly even more now, which fills me with a huge sense of not only relief but humungous joy and breaming optimism! My liver function levels so far seem to be swooping down quite beautifully on this treatment which thankfully not only means Liv II is working almost as fantastically as it (she? Is it a she yet?) should, but would mean I should also be able to keep my spleen, which I gather is quite helpful in us CFers!  (A working liver!! Eee! Bring on the mohitos eh eh.) My stomach is not quite washboard, but I can't get over the difference already. I know vanity should be furthest from my mind, but the thought of going out wearing normal beautiful clothes, not self conscious, not hating being out, not detesting every moment of public existence, (almost) literally makes me soar. 

I actually had two ops. Two trips to the clinically cold and intimidating (yet bloomin’ exciting) level 2 operating theatres. First was the actual transplant that took 12 hours, I had to go back in for a second time a few days later because they thought I was bleeding all around my new organs…which um I wasn’t. It was just fluid. A jej tube (like a gastro tube but into the jejunum part of the small bowel rather than the tummy) was also put in so I could get calories whilst zombied out and morphined up on obscene amount of drugs. The experience in the operating theatres was an odd one. I don’t think the reality of what’s about to happen actually hits, and even though inside I’m buzzing and excited like a banshee, I’m caught in this strangely slow and strangely calm liminal, timeless space, where voices are a muffled hum – figures draped in blue float around and even though you are the main event, no-one seems to notice you. Maybe they did – maybe they were talking right at me, but I didn’t hear. “Like some bold seer in a trance” as Tennyson wrote in (another of) my fav poem; numb not only what was to be physically but mentally aswell. I thought there would be some D-Day moment where I was told to count down from some profound number, all eyes watching until everything slowly went black. But instead the last thing I remember is having a mask put on me with a flippant remark that was a sorry excuse for an explanation, then told just to take slightly deeper breaths. Some blue robed figures stood talking near by in a little huddle, a couple stole quick glances and smiles in my direction, I was thinking “when’re we gonna start this thing?”, then almost immediately some figures, now in green, are muttering in very slurred tones, and I need to cough. But I can’t? Like wtf?

For quite a while I was so confused, and wondered if they’d even done the op. I was sure they hadn’t. I tried asking these green nurses, but couldn’t talk. Jesus fuck a duck, what have they done to me? I remember I could feel this epic rumble in my chest in the top right, and tried to do another huff or a cough but I had no puff at all (and holy crap, the pain in my middle when I tried!) It was like I couldn’t breathe as something was blocking my airways: It was the worst feeling I think I’ve ever experienced, no joke. This was the ventilator. I then tried to call a green robed nurse, but again my efforts were painfully futile. I panicked and winced and waved a heavily laden arm, weighed down by a heap of tubes sprouting from every inch of me, and tried desperately to motion that I-have-a-rumble-here-and-I-really-want-to-cough! And despite this hideously painful effort, no luck. “It’s OK love, you’re in intensive care. Keep your arms still... yes, you have lots coming out of you, don’t you!” Nah you silly cow. Then I saw mum, and tried to motion my dilemma to her. Hooray for mothers is all I can say. She eventually got it, and they brought out a sucky thing and stuck it (I think) down my nose. Nice. Didn’t even really work. A comatosed sleep later, the next thing I vaguely remember (though mostly from what mum had told me that the nurses had told her) is spontaneously coughing and simultaneously (somehow!) ripping out my ventilator. LMAO.

I ripped out my ventilator after the second op too despite even larger amounts of sedation.  I obviously don’t like ventilators. Who bloody would. After about a day in Intensive care I got moved to the High Dependency Unit, where my memories from both times mostly consist of hazy faces, odd dreams, and lots of pain when I would try to move. I had a morphine button I could press whenever I wanted to (it did have a maximum amount it would administer, no overdoses here!), but anytime I fell asleep I would wake up in agony. Massive design fail. I remember having a dream about facebook, and if I didn't log in then Facebook would steal all my money and pretend to be me with status updates about how I had died or something - and being sure it was real. Like a big hypo (once I was absolutely convinced I was in an alternate reality). I tried to ask a nurse to get me a computer or my life would be over, before probably zonking out again. It took ages for me to realise it was all in my head, and how sad this was!

The second op really kicked me while I was down; it took so long to recover and my left lung collapsed. My chest is still recovering (now it’s solidified a bit or something equally as odd sounding – a consolidation I think) poor thing, slowly, but getting there. As I said i'm only just off oxygen - now I can walk around the ward and go downstairs without it, though it's not a comfortable experience. I just have to tell myself I will be fine. I did do a lung function yesterday, and the numbers weren’t pretty. Not as dire as I expected, but I can’t remember the last time I’ve seen numbers like that. Of course, this is all understandable given the scale of turmoil they’ve been subjected to and my lack of doing anything - and I have no doubt I’ll get back to my norm – maybe even surpass it – but it’s still disheartening. From my best of 80% FVC and 60% FVC1 it’s now almost 60% and 30%. (I think if I did another blow in the afternoon and not first-thing-in-the-bloody-morning-half-an-hour-after-I’ve-woken-up I could get it to 40% oi oi). I have been going down to the rehab gym with my dad almost every weekday since i've been able to walk without wobbling spectacularly in order to combat both chesty crappyness and muscle disappearance – I cycled 5 miles the other day whilst listening to mostly Boney M and Britney Spears. I blame the meds.

The jej tube they inserted was also a bit of a mixed blessing. Of course, while I was still recently post op it was great to get the vital calories in via the feeds. But after a couple of weeks it became a nightmare as simultaneously it would fill me up AND make me both feel and be sick. This combination wasn’t helpful in getting to eat by myself, so weeks went by caught in this vicious circle of trying to get enough calories in whilst trying to have a big enough break to see if the nausea and fullness would subside in order to begin to eat myself. During this process I lost a load of weight, and you’ll find me now at a measly 39kg – I was initially 52kg. I’m eating now, so somewhere along the line my appetite started to pick up... and now I’m off feeds for good. Not fortijuices/ fortisips though, these are still haunting my days!

On the topic of food, I suppose I really should have started off by saying this: I no longer need creon nor insulin!! Major fucking win! Mealtimes though are strangely incomplete – I finish eating and am left with an unsettling feeling that I have some unfinished business. As I sit and play with the leftovers or proudly scrape an empty plate, I can’t help thinking that the mealtime isn’t finished – both enzymes and insulin brought a satisfying sense of closure to each meal. Now it feels as if there is no way to close that meal book, no The End. OK, yes, dessert sort of fills that hole, but still, it’s odd. Odd, but BLOODY BRILLIANT. I’m still getting used to it! Soon this uncomfyness will turn to liberation, I’m sure of it, but it’s hard changing life habits! I’ve had to be put on a sliding scale (continuous insulin) a couple of times when I was having huge doses of steroids (500mg a day huge!), which was boring, and whenever my sugars soar up above 15 because of my maintenance dose I get given an injection. It’s horrid sailing back into territory you thought you’d left behind – left with such jubilation too, and I get so worried my new pancreas is failing! Though I’m reassured it’s just the steroids and it’s all normal. Normal. Normal. I’m fine. Fine. (Eek!) I guess if my liver is rejecting a bit my panc would be too, so again with my funky blood treatment things should settle down soon.

SCARRRRR RARR!

And oooooh my scar! Sorry, did I say scar? I mean shark bite. My shark bite is massive. It’s called a ‘reverse L’, and I kept remarking how if I looked in the mirror I could write a backwards ‘aura’ and spell out LAURA! From the middle and bottom of my rib cage it goes all the way to the top of my bellybutton, then across half way round my side. It’s still ugly, especially in this glowing pink phase with staple dots radiating on either side, but kinda cool. I thought I’d hate my scar, but to be honest, I’m kind of proud of it. My battle scar, my war wound, my physical indication of this epic journey. I’ll get back to you with how I feel about it in 6 months though... I hope I learn to love it. Pain wise it’s fine now, but it was so tender I couldn’t cough without wincing for about 3/4 weeks. Physio was a nightmare. No matter how many painkillers / pain buttons I had, the pain would not subside which made clearing anything really tricky - every breath was a drawn out screech. Luckily I’ve never had real trouble breathing apart from shortness of breath/ tightness/ the occasional gunk overload (mostly due to hypertonic saline I’m forced to neb/ I choose to neb in moments of temporary insanity), but the intense panic that aroused from not being able to fill your lungs fully with air was terrifying. It felt like they had been compressed into a tiny tiny pocket near the top of my ribs – there wasn’t enough puff to blow my nose. Thankfully I summoned the Bird to help, and attached my acapella to it in the Brompton stylie. Oh boy it was sore, but all that oxygen whooshing in was heavenly! I’m back to just the acapella now, and have strangely overcome my sputum spitting fear. I could almost be a natural... (almost. It’s still naaaasty.)

Tha's ma Bird

I realise It probably sounds like a lot of complaining on my behalf – boo I’ve lost weight boo my chest is crap boo I’m bored boo hospital food sucks etc etc, and well, yes, there IS a lot to be annoyed with. It hasn’t been fun. BUT, and here’s the big but – don’t let me give you the impression in any way that I’m not the happiest, most grateful girl ever. After these temporary blips it’ll be fucking awesome. I can’t wait to take them and me out and have some fun and live some life! Lastly, but no means least(ly), a massive massive thank you to the donor’s family for saying that all important “yes” in the midst of such heartache, and of course to my donor for being a star and signing up. A thank you written here seems totally measly – Keats wrote to Fanny “For myself I know not how to express my devotion to so fair a form: I want a brighter word than bright, a fairer word than fair...”, and here I sort of share Keats' blissful woe. But don’t worry, I won’t resort to posting a pic of my big fat Cheshire grin either.

That’s all (that’s all? I just wrote a frickin’ novel) for now!

HELLO

A very, very, VERY belated HELLO! from not only me but my new liver, pancreas and bits of bowel!!

This will be an extremely quick post, just to reassure (and cast despair into the hearts of my enemies) that I am alive and well... WELL!

As amazing as Addenbrookes is, and has been to me, I will say now they fail miserably on the internet front. THERE IS NO INTERNET. Now I'm finally up to walking about and leaving the confines of the transplant ward, I have discovered a neat little pocket of wifi in Costa coffee on the ground floor - a whole 5 floors and long corridor away from my air mattress. (Yes, air mattress. I'm a skinny minny right now with a creaking back.)

I will prepare a summary of my adventures (oh there have been many!) soon, but i've only just in the last week or so been feeling up to doing more than lying in bed watching mindless TV... actually not even - i'd say moaning and complaining about shit. Actually I haven't even been complaining, more... nothing. It's been really odd. It won't be too long or mind-numbing, but i'm sure people might want to know what sort of things go on in this strange world of organ donation and receiving. It's certainly been tough, but I have no doubt the rewards will far outweigh this few months of slog.

This is now week 7 after my transplant - I got the call at 22.22 on the 22nd Jan, went into room 23 on the transplant ward in the early hours of the 23rd, and I am... how old? 23! BLOODY KNEW I was onto something with all that superstitious Freudian numerology shit! Since that date I've progressed all round the transplant ward, from theatre, to Intensive Care, to High Dependency Unit, back to theatre, back to ICU, back to HDU, side room, bay, new bay, old bay, side room, bay, and finally, back to where I started on the 23rd, room 23. Hopefully my last pit stop before I am released back into the big wide world. With my shiny new organs. Or as I once predicted (all those months ago!), out of my cocoon with shiny new butterfly wings into the spring! (F off snow and gales and rain, you are not welcome. It's nearly April for heavens sake.)
Plus, I have a swanky new flat-ish tummy to show off...!

I will post more in the not too distant future, but CSI Sunday and some IVs call. And I think my gastrograffin is starting to work...  

Drowning

I gave up on Ulysses. I caught the drift, and didn't feel like putting up with another 600 pages of it. Life is too short!

So instead I picked up 'The Drowned World' by JG Ballard. Another possibly pretentious escapade, but at least science fiction is fun! (And I like Ballard, all his books seem so interesting...)

I've only read maybe, 50 pages, but already I love it. This is from the blurb:

"Fluctuations in solar radiation have caused the ice-caps to melt and the seas to rise. Nature is on the rampage. London has been transformed into a primeval swamp, and within its submerged landscape giant lizards, dragonflies and insects compete for dominance. Human fertility is in decline and buildings sink beneath waters infested with decaying matter. Into this wasteland a group of intrepid scientists venture to record the flora and fauna of this new Triassic Age. Soon, ghostly voices haunt their waking and nightmares permeate their sleep..."

Fantastic, huh?

It's a proper dystopia, and despite the cause of this 'global warming' being rather far-fetched, it's a scarily accurate pre-emptive and haunting vision of what's happening to our planet, and what it could become... There are lots of giant bugs, and that in itself is pretty bloody horrifying. He wrote it in the early 60's - spooky.

Anyway, I want to share this paragraph - of course my life and the protagonist's couldn't be more different (duh), but this little snapshot of thought seemed to resonate. Transplant stuff (did you expect anything else!?).

I seem to be caught in this odd form of withdrawal - it isn't unpleasant, far from it. It is strangely calming. I've described it as a bubble before, and it is. It just seems to be becoming larger and noticeably quieter. I don't want to make this looming 'metamorphosis' bigger than it actually is, but it's quite an interesting way of putting it. Things will have to adjust, things will have to change, and I suppose in a sense i'm preparing for this 'radically new environment' by distancing myself from my previously normal(ish) life, whether I was aware of this or not. I think i'm going to be spending a lot of time in this new 'internal landcape', re-adjusting to a life where things i've known before will suddenly become obsolete. Like the whole process of calculating insulin and creon - things that pretty much determine how I live my life, what I eat, what I can do, where I can go - suddenly i'll live my life (in parts) ungoverned by these rules i've seamlessly built in. It'll be so liberating, but I can imagine it'll be weird! Maybe by withdrawing i'm also just getting used to a sort of loneliness or isolation or boredom that soon i'll have no control over, as I lay stewing in crumpled clammy bed sheets hooked up to drips and lines and beeping machines. With messy hair. 

Today is 6 months on the waiting list. So much for 3 months eh! Pah! I don't know if it's gone fast or slow... I couldn't say. It's all a little mushy and formless. Sometimes time flies past so incredibly quick that I blink and suddenly realise the leaves have transformed from a luscious summery green to that luxuriously melancholy autumnal red. Other times, days couldn't drag by any slower, and every hour seems to stretch into an everlasting and bitter reminder of time's slow, cruel passing. Then all these moments blend together, swirl and dissolve into a jumbled and incoherent timeline of... nothing much. It's. so.     bloody.          odd.   

I think Ulysses and it's modernist ways have caused some form of brain damage. Damn you Joyce and your time altering powers! Hate to think what 600 more pages would've done...                    

Chocolate chips and Cauliflower

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

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

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

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






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

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.

Jaws without the shark

Wahey guess what treat lays instore for me tomorrow? I'll give you a clue: it involves cameras, drugs, and bang on trend clothing.

Naah don't be silly it isn't a super cool Abercrombie model party in the sparkly sordid depths of a Mayfair club, it's an endoscopy! Duh! (Oh i've missed that sexy hospital gown.)

It feels like i've only just recovered from the one two weeks ago, and I SWEAR, if this one stops me from consuming any more delicious KFC chicken shaped calories, i'm not going to be a happy chick (lols, see what I did there?). As tasty as tomato soup with whizzed-in hot dogs sound, it wasn't really that enjoyable. Funny that. And my GP has been ridiculously incompetent in ordering me the high calorie milkshake supplaments (they're just a bit floppy in ordering any of my meds - one tub of creon and one blue inhaler for a two month supply? Deekheads) so i'd rather not have to rely on their haphazard attempts at DOING THEIR JOB to avoid starvation and malnutrition. (I know I can buy milkshakes. But I like free stuff.)

I'm hoping there won't be too many more of these tedious procedures - I don't want to jinx anything, or get too optimistic given the completely unpredictable nature of transplants, but i've now been waiting 3 1/2 months, and I was told the average wait for me would be about 3 to 4 months. It's quite a short waiting time due to me needing multiple 'bits', and being on the national register. Though liver waiting times are significantly less than lungs, for example. Every time I have something done such as an endoscopy or vitamin injections, even when i'm doing my insulin or taking enzymes at dinner, at the back of my mind I always wonder if, (and secretly wish that) this'll be the last time. Normally I try not to have those thoughts because it's a sure way of preventing my phone from ringing, hence the 'secretly'! And then I get all schizo and pretend to myself I didn't think that... when I did. And I know I did.

The other things I wonder:

- Will I get my call before Big Brother finishes?
- Will I get my call before I finish my book?
- Will I get my call before the Olympic closing ceremony?
- Will I get my call before Carnival?
-...before my mum's b'day (sept 7th)
-...before my bro (Sam) goes to Uni?
-...before we finish the bathroom?
-...before I go to see the Paralympics? (I know!)
-...before I ever get round to tidying my room?
(These ones, minus the last, I want my call to come after!)


This is a bit of an aside, but I feel like putting these quotes in because they're hilarious. From this article about the writer Will Self.

The coffee pot boils, no doubt in a deliberate attempt to impose dull, naturalistic order on the contemplation of what it means to exist. Self unfurls himself from his ergonomic computer stool and gingerly removes the pot from the stove using a grubby towel.

"I always start with physicality when I'm writing as a woman. So I always have a vagina and think about having periods. I always start with an embodiment. And I think when I read men writing about women, they never seem to have thought about that. They've never thought: actually, you've got a cycle, you're different. So if I do succeed at all, that's what it's down to."

He is already beavering away at his next novel, the working rubric for which is, he tells me, "Jaws without the shark". 

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.

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!

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.

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!

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.)