Weight Gain and Summer Fun

It's been pretty shittily long since i've written - there's much and simultaneously not much to write however I felt I should check in and let whoever reads this thing know that I'm not dead, but very much alive.

Over the last few months life has been pretty fucking awesome. Hospitals have figured incredibly low, and when I have popped to the Brompton for a check up, they send me away ecstatic at just how fantastically i'm doing. My swollen face has reduced quite a lot, and even my tummy keeps shrinking in size - I finally feel (almost - does anyone?) normal!

Big news health wise is that for the first time ever, i'm a healthy BMI *scream*. The dietician even said I don't need to gain anymore weight if I don't want to *double scream*. I never ever thought i'd ever hear those words, when I think about it i'm still in shock. For he majority of people with CF, "gain weight gain weight" is drummed into you at ever single clinic, every meal time the doctor is there on your shoulder, whispering those words, with your parents voices on the other side. Gaining weight, high calorie, eat more Laura! are statements that haunt your every move, and to be suddenly free from such a burden is both incredibly hard to comprehend, hard to put into action but at those epiphanic moments of realisation absolutely heavenly. I still eat high calorie - as I said it's hard to break the habit of a lifetime, but without the pressure food, mealtimes and day to day life is just incredibly more enjoyable. It surely feels like a huge weight has been lifted, and food is just there to enjoy now, not a vital part of my day. It will take a while to adjust to this new way of viewing eating, but I guess it's just part of the process of adjusting to my new body.

Chest wise, i've been incredibly stable. In the last month i've not only been to one festival, but two - my first ever festival experiences(!), complete with rainy night time camping, lack of sleep, and hurricane Bertha thrown in for good measure. The only casualty of both weekends being my intense sunburn - it got pretty unbearable, especially due to my deadly cipro/ voriconazole cocktail - much agony ensued! These weekends haven't had a detrimental effect on my lung function yet, though I went into them the healthiest i've been, probably ever. The two values of my lung function has returned to only being 20% apart rather than 30%, which I see as a good sign. Its now stable at 60 and 80 percent, and I feel fantastic. Below is exactly the consequences of feeling such a way, and having a little too much fun.

Interestingly, now i'm working 5 days a week, 9 until half 6, I seem to have an insane amount of energy, more than i've ever had before. It's invigorating, and I would really recommend to anyone filling your entire day with a structure in order to keep your body energized. I will go to work, do a 9 hour day, then go to the pub or out that evening, and repeat. I have no clue how i'm coping, but I am! As time progresses however I do find myself craving the weekend to recuperate, and i'm not sure if I could continuously do this sort of routine without a holiday every few months!

My time at Diffusion PR has nearly come to end, i'm sad to be leaving yet awaiting with an eager heart all the possibilities that lay ahead. I know for sure I don't want to return to lazy indolent days, and will be searching for a new job, part time would be ideal, as soon as I finish. I will allow myself a couple of weeks to get on top of myself, then look forward to jumping into a new project. PR has been interesting, but I don't want to close doors just yet career wise. The ethical work with Primark and Dunelm's social media especially have been fantastic and such good experience. Doing this work I have become brainwashed by the amount of bloggers and vloggers (I use fancy words now) i've come across, so out of curiosity I decided the other day to dabble with my very own vlog. I was supposed to be working from home, but obviously found ways to procrastinate, resulting in this weird piece of cringey cinema. Here's the link to laugh, I doubt i'll be doing another any time soon!

A Calm So Deep

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

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

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


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

(Composed Upon Westminster Bridge, 1802)

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

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


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

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

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

The Sun In Splendour

I'm all settled in my new house, and I love it. Things are actually pretty damn good at the moment - of course the house and the independence that comes with that, my health too is fabulous and stable, and i'm pretty happy. I don't think i'll ever be totally content, my high expectations continuously seem to fall short of the realities of life - it seems to be a malady I can't shift despite the set backs that should dampen my expectations and also just the pure appreciation of what I now have.

I'm still job hunting, but again I refuse to settle for a banal job even though my money is depleting at the rate of knots. Sometimes I wish I could just shake myself, hurl out the defiant cobwebs and stubborn morals that have me gripped in this debilitating stance. The whole "do what you love" is really a very privileged stance to have - though the privilege, freedom and scope for experimenting as I said is twisting down the plughole at an intense speed, so I guess a soulless recruitment job may soon be on the cards. I'd rather fucking starve to be brutally honest, even if they paid fantastically, had an abundance of holidays and leisurely lunches - none of it would be worth the soul destroying nature of what I'd fill my precious days with. I'm waiting to her back from another handful of job applications - ones that I could actually love - so hopefully one may offer a glimmer of potential that i'll just grab.

Living by myself has brought with it this dichotomy of feelings - as I said the freedom and independence is extremely relieving and bloody fantastic, like a weight has been lifted from my shoulders. It's taxing and exciting too as I try sort out bills, broadband and broken boilers. I also adore the space the place gives me to think and let my mind wonder - the place is a blank canvas for my thoughts, musings and dreams, and to twirl about at night with not even a spider looking on criticising my moves  (...yet.)
I'm not the most social of butterflies, but the stillness and quietness some of the days and nights bring with them do however fall on me like a thick fog, and makes me crave the company (even though sometimes grating and annoying) living at home had. I don't even have a kitty to play with and tease, and tell life's woes and adventures too as it looks on, completely uninterested. Starting tomorrow however my mate and her fella will be staying with me for a month, and in July my other friend will come and live with me permanently(ish), which will inject some life and a welcoming continual buzz. I can't wait.

I think this time and space to think is a curse in disguise - there's something to be said for a relentless life where the niggles of your mind don;t have either the time or the space to burrow and lay their eggs, loaded with possibilities, doubt, apprehension, memories. I crave a hectic, all consuming lifestyle, which is something I doubted I ever would, or for a while be well enough to do. Interesting and taxing, yes. Exhausting, not so much. But I wish to numb my wandering mind and fill it instead with everything everyone else does - mostly banal, grown up shit. How fantastic must it be to seamlessly erase those escalating thoughts and concerns about life and health that linger all day, and just do, just be. The rare days I spend now consumed in indolence, that I once cherished and love, now fill me with a huge sense of nothingness and waste, and I wonder how on earth I spent such a large chunk of time swamping. I know ill health and an energy sapping liver has a lot to answer for, and i guess the fact i'm now restless and sick of it is a fantastic and encouraging sign that i'm healthy. As Milton says, "Awake! Arise! Or be forever fall'n!" I just have to grab it by the balls and embrace it. I don't want to spend a life musing about lost loves and lost lung function, the changing shape of my face and the changing shape of the world (unless it's my job to do and i'm bloody paid for it!)

I'm still reading Paradise Lost (my time recently has been taken up with painting, cleaning, all that house moving palaver), and I really really love it. Milton was a fucking badass. It's so rich and deep, and i'm a sucker for deep and profound quotes. He describes the four "baleful" rivers of Hell, as well as Lethe, who those who have died cross in order to reach the underworld. If you touch the waters of Lethe, you immediately forget all memories and erase all feelings, and will spend the rest of your 'existence' in Hell completely numb to all experiences. As they cross, they all strain down to touch it, but that fucking bitch gorgon Medusa stops them. So near and yet so far. It's pretty heartbreaking, to think they're so close to a bearable eternity in Hell yet taunted so mercilessly.

I'm rambling because it's way past my new bedtime of before midnight. See, i'm really trying to be good, I am.



"What hath night to do with sleep?"
Paradise Lost

Nocturnal vibrations, electric moons

My bed is full of biscuit crumbs and insulin needles. I guess this is a good sign -  a sign that my appetite has once again fluctuated upwards, my weight will soon follow suit (quickly too, this pancreas is a dream). I'm a fad, a yoyo dieter, one week scoffing biscuits the other week biscuits not even entering my conscious mind. Weeks will pass with two measly meals a day, until I wake up one sunny cool morning and find myself craving a second cereal, a second helping at lunch. I have found no correlation to this flummoxing fluctuation in appetite, though i've never been able to pin point every bemusing change in my health, simply because there are so many variables. The only answer is to stay as stable as possible - take every tablet, every nebuliser, wear every layer I should as I go out into the cold, and probably leave an hour earlier than I want to when out in the misty early hours of the morning. A dip will throw everything off course and plummet this equilibrium into chaos, inevitably disrupting the delicate order of things. What could cause a dip? Who knows.

What shall I do? Let's go with everything. 

I met a man on the Hammersmith and city line. He very kindly told me as we approached Baker Street, he'll send me a note in the Metro, mentioning how he'd just love to let me have a bite of his fruit and nut bar, then winking. I chuckled, nervously, trying not to do anything seductive to my dairy milk. It was an odd moment, creepily intimate yet witnessed by a packed train of fellow londoners, no doubt looking on expecting to find my mangled and abused dead body on the BBC news the next morning. 

I looked in the paper the next day for my love note, nothing.

I can't say i'm disappointed, though last night I had visions of framing it and telling my kids about horrifically uneasy yet quite serendipitous moments that we all encounter on the london underground. 

As I was making my home that same evening at around midnight, I looked around the infinite and ghostly carriage as I was sophisticatedly scoffing my KFC, wondering if any of these unsuspecting passengers would find a slightly drunk redhead stuffing popcorn chicken in her mouth alluring enough to write another note in the paper. Londoners are a weird and varied bunch, you never know. 

I love the night time. Space and time for thoughts, musings and dreams. It's a darkness to indulge in those moments the daytime has no time for as they're swallowed by to-do-lists and nebulisers, expectations of productivity and desperate clinging for order. The Futurists in their manifesto declared "time and space died yesterday", and in an ironic twist in circumstance, their aggressive declaration of productivity has morphed into an calm acceptance that that productivity has set with the sun, and the night is mine to dissolve into.  "Let us leave good sense behind like a hideous husk and let us hurl ourselves, like fruit spiced with pride, into the immense mouth and breast of the world".
My mind is hurling. It's speeding into those immense realms, leaving sense - all good sense behind in my tangled duvet. Reality and my perception of it has been lost in the infinite possibilities of the stars, so much so I worry for my own sanity. The Romantics were obsessed with the power of the imagination and it's ability to catapult you into places and experiences and feelings you couldn't possibly reach. To harness that power transforms a mundane life, often, like Coleridge, trapped within the limitations of the frail human body, and can take you away from a life where you cough every 5 minutes, drown in pills...insulin needles, and are alone.*
"What is the use of looking behind at the moment when we must open the mysterious shutters of the impossible". The Futurists were a bunch of dodgy fascists with very questionable intentions, but I can't help but fall in love with their inexhaustible energy and contagious lust for a better life. If you haven't read the Futurist Manifesto please do, it'll probably blow your mind. They dreamed big, and in the silence of the night my dreams take on an almost similar essence of grandeur, just on a more subjective and personal scale. Boundless and barrier free, these waking dreams travel to the stars and back, carving out pictures of life that sometimes you're almost scared to think of in case you jinx those wishes. I was told I was a dreamer by someone I used to know, and I guess I am, when the realities of life such as hospitals and money are snoozing in the corner. The sun inevitably comes up and suddenly time and space are back from the dead - very real and very alive, there's that ticking clock - inside and out, and all those invisible boundaries we encounter everyday, narrowing our space to explore, to think, to dream.

Some say that gleams of a remoter world
Visit the soul in sleep, that death is slumber,
And that its shapes the busy thoughts outnumber
Of those who wake and live, - I look on high;
Has some unknown omnipotence unfurl'd
The veil of life and death? or do I lie
In dream, and does the mightier world of sleep
Spread far around and inaccessibly
It circles?
Shelley, Mont Blanc, 1816 (just before his 25th birthday SNAP. Wait wtf am I doing with my life)

Life in the celestial light of day is slowly catching up - in the next couple of weeks i'll be moving into my own house in East Acton, and i'm proper over the moon! I can't wait to have my own place, my own space to just live and try humorously to be a grown up. No doubt in the not-too-distant-future i'll tell you all my #adultfail tales. Or I may, by some freak of nature, be a natural - the perfect house wifey, complete with marigolds, tea and a Victoria Sponge. (We can dream, can't we... !)
The sunshine, especially this glorious springtime weather, has started to thaw my malaise and incessant procrastination - this week alone i've started the squat challenge, seen the GP about a gym and trainer referral, have cut out fizzy drinks and almost all gluten, and am going to try drink much more water - all things i've been meaning to do for quite a while, instead hiding myself in Gossip Girl and dreaming of Dan Humphry. I'm also on 100% compliance with all my treatment. I seem to have a finite number of things I can do/take, and the addition of mannitol (a mucus loosener, twice a day, bloody tiring) pushed that over the edge. For a while both Tobi podhaler (inhaled antibiotic twice daily) and mannitol seemlessly erased themselves from my routine, and it's been having quite a detrimental affect on my health (as it fucking would). But now, by cutting down the amount of mannitol tablets I inhale each session it's become not so exhausting, completely managable, and leaving time and energy for the Tobi pod. I'm already feeling the benefits. It seems this spring has heralded in a new wave of optimism and determination - and i'm sure the imminent new house and all the freedom, responsibility and possibilities that will arise is to thank, as I will finally hold the reigns to my own universe.

*Dreams such as travelling to distant places, going on foreign boozy adventures, or climbing huge mountains and soaking up sublime views from those unreachable heights are fast becoming just that  - dreams. I can't even walk up a flight of stairs without getting out of breath, how could I scale the heights of Mont Blanc (not forgetting carrying with me the complete works of Shelley)? I'm resigning myself to the fact that those arduous delights will have to acclimatise not to the reality of high altitude, but the confines of my imagination. "The everlasting universe of things flows through the mind, and rolls its rapid waves, now dark - now glittering - now reflecting doom - now lending splendour..."

A world of magnets and miracles

I will start by saying a belated happy first birthday to my new organs! I can't quite believe it's been a year: the time has whistled by, I guess I've been consumed by a whirlwind of hospital visits, check ups, rehab, highs and lows. It's been an odd year - so much had happened yet seemingly so little. Recovering has taken so much longer than I thought it would've - from trying to regain my lung function, trying to put on weight, trying to build back my muscles and strength (I still feel wobbly despite cycling and hitting the gym)... To deciding on a career path, finding jobs, finding (and losing) loves, rekindling friendships and grasping back my independence. As I said, it's been full of highs and lows, the lows either revolving around that "kindly race of men" (though substitute kindly for 'lost and confused'), or that feeling of limbo that creeps silently in like a morning mist, and without realising you find that you feel utterly lost.
"What now" has been the shape this limbo has taken, haunting my days and my nights, coming to the forefront of mind at poignant moments when I feel as if my bungee cords have just been cut (rejection of any sort seems to hold the knife). I don't fall because, as the optimist I am, I know other things, other jobs, other people, will be round the corner. It's the unsettling, horrible and disturbing feeling of floating that to me is the most terrifying - not knowing what comes next or how even to take the next step.

It sounds cheesy but I've learnt a great deal about myself this year. I think I've coped with an onslaught of shit reasonably well - I've definitely crumbled, and at times it's taken a good kick up the arse to regain my sanity. But I've powered through, and even surprised myself at this new found resilience in all aspects of life. I guess I care more about myself - my health mostly, body AND mind. I've gone through too much hurt and pain and hospitals and upset to let things destroy all I've endured and worked for.

At my 1 year post tx clinic the other day, we were looking at my blood level chart - a huge piece of card that has tracked all my liver levels and other important blood results throughout my whole transplant journey - from being listed to present day (yes, it's massive.) Seeing my liver levels creep - no, jump up each time before my transplant, to seeing them beautifully and steadily glide down after, was just amazing. The consultants couldn't be happier, and neither could I. Seeing my levels so perfect blur out the hair loss, the chubby face, the shaking, the bruising, the loss of appetite... the necessary evils the immunos inflict in this game of give and take. 

So, what next? The dreaded question. There are points of clarity within the hazy future, I see where I need and want to be going yet that path looks a little blurred and undistinguished. I suppose I'll just have to build it up as I go along, hoping I don't fall through the illusion - the often unreachable visions of grandeur and happiness I create. I seem to make progress - apply for jobs, sort everything out, write, read, conspire - yet an exacerbation will take hold and pull me back to complacency and stagnancy while my energy levels are in the dumps. It's a vicious cycle - once I pick up I attack everything with gusto, jump into life head first, stay out late and as my mum would say, "burn the candle at both ends", until I become run down again. I guess I need to chill, my lungs can't keep up with the chaotic life my mind is aching to pursue. It upsets me, when people I know seemingly have an inexhaustible life force and energy - one that I'm achingly jealous of. 

Today is a day of catch-up after a tumultuous week. I find myself sat here with my tea, feeling bruised from last night's 4am return, and a cumulative bruising of body and mind from a week of late nights and befuddlement . For matters of the heart, in this instance I'm drawn to say body and mind not just mind, because it seems my whole being has been broken and bent. I'm really quite unsure why I feel like this to the extent I do, I suddenly feel as if a melancholic dew is covering everything I see, everything I do, piercing my mind and clouding my vision with an illusive and intangible greyness. I know it'll be gone in a day or two, I just didn't expect to feel so empty. I've prescribed myself gin, Fleetwood Mac and dancing, and got hit on by 3 over 40's last night so the future is... bright.
I'll leave you with this piece of genius, I guess if you want to get deep you could say my scar is now an integral part of what makes up me, or you could just think it's fucking cool. 

Beyond the horizon of the place we lived when we were young
In a world of magnets and miracles
Our thoughts strayed constantly and without boundary
The ringing of the division bell had begun

...

Looking beyond the embers of bridges glowing behind us

To a glimpse of how green it was on the other side
Steps taken forwards but sleepwalking back again
Dragged by the force of some inner tide

...

Encumbered forever by desire and ambition 

There's a hunger still unsatisfied
Our weary eyes still stray to the horizon 
Though down this road we've been so many times

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."

Winter chills

Things have been busy since I last posted - I even forgot about this little blog until I was kindly and lovingly reminded about it at the other night at the pub!

I've been applying for graduate jobs within advertising, and got to the final interview round at top ad agency AMV BBDO - not bad for my first ever job application. Sadly I didn't get the job, but getting to the final 25 out of 1500 applicants in pretty awesome, and has definitely not dampened my verve to continue applying. The final interview was a toughie - 12 hours of breakfast through to drinks and dinner, with an Apprentice style advertising task in the middle dotted with relentless interviews and presentations. I'm now applying for internships within advertising - money or no money i'd just love to get my teeth stuck into something juicy. 

Other big news - my jej feeding tube is out! It's been giving me stick, and I've been gaining weight without it (I reached 47.something kg!) so at the gastro clinic the other week I made Dr Westaby yank it out. It's a wonderful feeling of freedom, and after 10 months I'm finally tube free. The only ghostly memory of the transplant is the fading scars - and fading they are.

I've also gone and chopped all my hair off. Transplant anti-rejection meds have been causing havoc with my hair, leaving it a thin, whispy and damaged mess. It was so thin that all together it was as thin as my little finger. It was getting me down terribly - it used to be so thick and luscious that I now felt a shadow of the Laura that once was. So it's now a super little bob, and I love it. 

Real life problems, niggles and dilemmas are beginning to seep back into my life again, which as much as they're annoying, are a refreshing reminder that normality isn't just a faint hope anymore. I think my bubble has finally broken, and in flows reality. I love that flippant things like jobs, men and wine are a thing again (flippant? Really Laura?) and health isn't constantly at the forefront of my mind. Saying that, my chest still feels slightly temperamental, but I did blow my best ever lung function in the recent past last week at clinic, WELL chuffed! 

Things are exciting, things are fun, and even despite litte dips things are good. Even with set backs, better and more exciting things are always there to take you by surprise, and keep things sparkling. 

How soon is now?

It's tuesday. And i'm not in the Brompton - i'm at Addenbrookes. Thursday night at 7 in the evening (it was aready dark, depressing eh) the nurse came in, rather shocked, and said I need to go to Cambridge as Addenbrookes decided they want to look after me and my cytomegalavirus. The only rush was they had a bed, and werent sure when they'd next have one available. So dad came to get me and took me to Camb (yes, no hospital transport stingy bastards) and arrived at 10pm.

The deal is, it's doing stuff because i'm on steroids (which as well as an anti-inflammatory for the airways, is also an immuno-supressant), which means i'm super immuno supressed at the moment. And because of this, the little virus is having a mini party. I'm coming off the roids (I'm only on them for my chest), so hopefully the virus will settle down and not do much at all once i'm off them. Drama for nothing. I keep getting told how well I look etc, which I know is because of this steroid face haha. Saying that, I DO feel super well - the IVs seem to have knocked the green gunk to some far flung outer region of the galaxy, my appetite is monstrous, i'm full of energy and to be honest, I feel fab. I'm loving it. It may be the roids, it may be the meropenem IV. It may just be me.

Mum, dad and my brother came up to see me on sunday, and we went out for a sunday lunch in Grantchester, a little village not far from the hospital. It's a beautiful little village, where the intellectual elite of Cambridge have forever flocked to, and we had lunch at a pub called the Rupert Brooke, who was a WW1 poet and lived in the town. His famous poem, 'The Soldier', has the famous line 'If I should die, think only this of me; That there's some corner of a foreign field, That is forever England", yet he wrote a funny and swooning poem about Grantchester, with lines from the poem framed in the loo, as you do. My admiration of the hamlet grew when we went to 'The Orchard' - where they serve tea and cakes in deck chairs under apple trees, bathed in glorious warm sunshine, and the river Cam sweeps by at the bottom of the fields. It was just gorgeous.

"I only know that you may lie
Day long and watch the Cambridge sky,
And, flower-lulled in sleepy grass,
Hear the cool lapse of hours pass,
Until the centuries blend and blur

In Grantchester, in Grantchester. . . ."
I'm a city girl through and through, but the tranquility and serenity of such an idyllic place is enough to make me crave the country bumpkin life... for a short time at least. I could just spend endless afternoons there, grazing on cake and drowning in tea.

Since thursday i've been mostly sitting with my headphones on. It sounds terribly banal, yet for some reason i've been loving it. OK yes i'm confused too. But i'm going to roll with it. Ive been trying not to sing a long (i've failed). But dance, yes, i've danced. A sort of bed dance. I've also been disappearing off the ward much to the doctors dismay, as I bumped into the consultant today in the corridor on the way back to the ward who said "Ive been looking for you all weekend!" (He wanted to tell me he doesn't want me anymore and is going to send me back to the Brompton... if they have a bed.) I get back from one aimless wander, stew for a while, then i'm off again. From the gardens to the tenth floor, from the theatres to the concourse, my music fuelled explorations hold no bounds. Late night ones are the best, where it's deathly quiet and hauntingly eerie, and the corridors are mine to fill as I wish. I just have incredibly itchy feet, an explosion of impulsiveness, boundless energy, and a lust for the now - a 'now' that's just out of reach. I just want to be let out and I want to go places and do things... and well, the Smiths, as always, say it perfectly:

"Take me out tonight where there's music and there's people and they're young and alive. Take me out tonight, cause I want to see people and I want to see life. Take me out tonight, take me anywhere I don't care I don't care I don't caaaaaaaare!" 





 


  

Deja Vu

2 and a half weeks ago I told the doctors, "If you only give me 10 days of antibiotics IVs, i'll be back in 2 weeks!" 2 weeks almost exactly after I was discharged from the Brompton hospital, I'm back in.

To be honest, my gunk started turning green the day I was set free. I waited a couple of days, then started cipro. However my usually magic oral didn't even touch whatever was down there, and the last few days have been really hard work. I woke up this morning fighting for breath - which was pretty good timing given I called the Brompton on wednesday saying I need to be seen ASAP and was booked to be seen on Lind ward this morning.

So here I am, after a day of bloods and x-rays and coughing up crap, sitting in room 28A, gazing out onto the Fulham road and the vast luxurious smorgasbord of sky that kept me so sedate over my 2 month admission back in April. And it hasn't disappointed yet - a deep orange sun cast its pinky orangey glow right into my room, as mini splatters of clouds scattered the whole canvas. There's something oddly calming that i'm back reunited with this familiar view - I suppose being so high up and seeing such a vast expanse of sky makes me feel as if i'm not so restrained, as if i'm not missing out on so much of the world from my ivory tower as its all here, right in front of me for my eager to eyes to peer at endlessly. This view has now I suppose also become synonymous with recovery and getting better - I know when i'm here i'm in good hands.

I'm being given meroprenem this time, which worked wonders when I came in a month ago. They've decided not to give me any anti-fungals as I haven't grown any in ages and it's only been 2 weeks since I stopped my last course. There was discussion as to whether this exacerbation was due to the Cytomegalovirus (CMV) which my donor had, as the anti-virals I was on to suppress it was stopped 2 weeks ago, and weirdly my CRP (infection level) isn't too dire. I haven't been at all coldy or fluey (which I was told would happen if the virus became active in my body), and Addenbrookes have said hold off on giving any anti-virals just yet. The blood test that indicates whether the CMV is active doesn't say how much of it is active, but it is. We're hoping as we treat the infection the virus will just do its thing and buzz off.

Im pretty glad to be back here - obviously not really, but I hope this time it'll sort me out good and proper so in a few weeks I can be back to getting on with LIFE. I'm pretty pumped about stuff at the moment, but there is a good lull these few weeks where i can just concentrate on getting back to tip top condition. This lust for life probably hasn't helped my cause (are you singing Iggy yet?) as i've been dashing about across London (and beyond!) for the past 2 weeks like a loony. I probs got loads of germs. Its this huge moral(?) dilemma isn't it - do you stay healthy and sit in your bubble at home, or go out and do fun stuff but risk getting run down? It's a fight i've had battling out in my head the last 24 years (um technically), though of course I didn't think about important stuff until I was at least, um... i'll go with 23. I lived a blissfully ignorant life until I started drinking and staying out late and realising 'If I go out clubbing without a jacket and drink loads and then sit on the beach and don't get home until 5 yes I will be coughing the next day'. LIFE EH. (That wasn't when I was 23. 23 is a lie.) I still blindly and lovingly follow the Keatsian mind set: "O! For a life of sensation rather than of thoughts!", though it didn't suit him very well now, did it... (I think where I and Mr Keats differ is that I would now have brought a better coat and waay more layers if I went walking through the Lake District. In winter. Silly boy.)


Now the sky is a musty inky blue, with a single glowing white cloud in the middle and the flashing red lights of a plane sailing off. Recently i've been desperately hoping I could escape somewhere for a bit - i've been secretly planning trips in my head, wondering if they could become a reality. This bubble was somewhat burst when I realised you have to wait a year after transplant to go anywhere abroad, so I suppose i'll spend each moment watching planes planning somewhere I can escape to in February - a year after my transplant. Those flashing red dots are so alluring!

Anyway, as I haven't really got dressed or brushed my hair or done my make up for 3 days, this is the only 'allright' picture of my NEW HAIR COLOUR! I had so stay red, it's just a bit deeper. It's a semi-permanent, but tempted to go permanent... whaddya think?!

Portrait of the artist

The initial 10 days have now turned into 2 weeks, with my release date from Hotel Brompton being Thursday. I'm only on one anti-fungal drip a day since they stopped my antibiotic, and they're not even sure I have the dreaded fungus, so it feels like I'm locked in a hurricane shed for the fear of a slight easterly wind. Yesterday, as from the confines of my room I tried to round up doctors and head nurses (to no avail) to get their arses moving on whether they'd let me home, 10 days of confinement proper started to grate. The allure of home faced with the impossible task of organising everything when I can't even leave my room was too much and I made a baby doc stutter and literally run from my room. In 8 hours the whole motley crew of nurses and doctors and consultants couldn't communicate together and decide whether I could leave and come back an hour a day for three afternoons to finish the course. Evening hand over came and the languid and dismissive attitude of all involved left me in a slump, relegated to the fact that yep, I'm staying here.

No fear, another film, reading Dorian Gray and listening to Quadrophenia in the early morning seemed to chill my tautly strung nerves, and I found myself lulled into a weirdly tranquil and serene mood. Even though hospital is a drag, I find great comfort in having a room filled with all my basic yet indulgent needs, me time, and an unexplainable feeling of independence. I imagine this is my own studio flat, with vaulted ceilings, big TV, and not a care nor responsibility in the world. I strangely love it. I think it's about embracing the inevitable entrapment, and realising this wont be forever. Once you have that, all you can do is enjoy it. I don't feel alone, my phone is constantly by my side, with voices and words filling almost every minute of every day. I love whatsapp. And lovely texts and of course snooping in on the twitter world. I also have my bike and music TV, and meals served just at the right moments. I finally watched Almost Famous and 500 Days of Summer, both which made my heart tremble a little bit. 

Saying this, I have no idea how I managed 2 months here in April, but it must be a sign I'm feeling good. I can't wait to escape, I have so many things I want to do and people to see; right now I'm bubbling with excitement like its the first flush of spring, I think I'm the happiest I've been in quite a long long time. I want to buy an autumn coat and dye my hair, I want to rinse my travel card dry and maybe be promiscuous in the rain again at 1 in the morning... this time dressed appropriately!  

Every time I read Dorian Gray I discover new little gems. I've just read a passage that goes "I have grown to love secrecy. It seems to be the only thing that can make modern life mysterious or marvellous to us. The commonest thing is delightful if one only hides it." So on that note I'll keep my serendipitous moments a secret, to keep them even more delightful. Life's all about little pleasures. 

L x

Ripeness to the Core

It's september! Mind-blowing! These months have passed so quick, it's odd to think that soon the leaves will be turning, and autumn will once again grace us with it's magical presence. I love autumn. I love everything about autumn - the temperature, the colours, the sunshine... Many of you will know my twitter name is @mapleleith, where I have a romanticised notion that I have hair the colour of maple leaves (and my middle name is leith). I don't, but there's still something autumny about ginger hair, when it catches the light (The only time it looks awesome). All the colours are just so yummy - I have a collection of red/brown/auburn/maroon nail polishes the size of a small shop, and seem to throw on all the autumnal reds and browns no matter what season. So nothing makes me more happy than to have an environment where I finally look in place and matches my subdued taste! Autumn is underrated. Think of september weather - it's full of glorious sunshine as the Indian summer extends its sun right through the changing leaves. But even when it's dismal it's magical - mist and fog and rain become something out of a painting when framed by those autumnal hues. I can't wait to find my boots, my wooly jumpers, my scarves, my coat, and breathe in that crisp air. I like having a chilly nose too.


Season of mists and mellow fruitfulness,
   Close bosom-friend of the maturing sun;
Conspiring with him how to load and bless
   With fruit the vines that round the thatch-eves run;
To bend with apples the moss’d cottage-trees,
   And fill all fruit with ripeness to the core;
      To swell the gourd, and plump the hazel shells
   With a sweet kernel; to set budding more,
And still more, later flowers for the bees,
Until they think warm days will never cease,
      For Summer has o’er-brimm’d their clammy cells.

Who hath not seen thee oft amid thy store?
   Sometimes whoever seeks abroad may find
Thee sitting careless on a granary floor,
   Thy hair soft-lifted by the winnowing wind;
Or on a half-reap’d furrow sound asleep,
   Drows’d with the fume of poppies, while thy hook
      Spares the next swath and all its twined flowers:
And sometimes like a gleaner thou dost keep
   Steady thy laden head across a brook;
   Or by a cyder-press, with patient look,
      Thou watchest the last oozings hours by hours.

Where are the songs of Spring? Ay, where are they?
   Think not of them, thou hast thy music too,—
While barred clouds bloom the soft-dying day,
   And touch the stubble-plains with rosy hue;
Then in a wailful choir the small gnats mourn
   Among the river sallows, borne aloft
      Or sinking as the light wind lives or dies;
And full-grown lambs loud bleat from hilly bourn;
   Hedge-crickets sing; and now with treble soft
   The red-breast whistles from a garden-croft;
      And gathering swallows twitter in the skies.

(1819)


Here's Mr Keats' To Autumn. I love his personified Autumn; an oozy goddess, both busy and productive yet deliciously indolent. Nature is saturated with goodness and Autumn's spell is cast - the fume of poppies lull us to watch the "last oozings" as this drowsy haze envelopes us. There she is, strewn in the barn with her (obviously red) hair blowing in the wind. Many poets see Autumn as the harbringer of death, and I suppose it is. But I love it, and it feels exciting when seasons change. And I think Keats fuses these two notions - that autumn is as much about harvesting growth and beauty as it is decay. I never mourn the end of summer - if I could live in a world where there was Autumn all year round I would. Though of course if that was possible you'd miss the leaves changing colour and the cool crispness arrive, which is the best bit. Autumn brings with it it's own excitement and it's own adventures, and hopefully my autumn will be exciting but with that necessary slice of indulgent indolence thrown in. (Think cake and films round the fire mmmmmm)

Autumn (1898) William Stott

I like this painting of Autumn. I think it's a bit like Keats's lady Autumn. It think it's also a bit like 'Autumn got waaay drunk off homemade cider went to lie in hay and lost her shoes.'

Autumn Leaves J E Millais

And I think Millais knew what Autumn is really for. Jumping in massive piles of leaves. GO'ON MILLAIS.

My summer said it's final goodbye as autumn has heralded in a stay at the Hotel Brompton. I caught some lurgies (I was being promiscuous and got caught in rain at 1 in the morning), and consequently my voice disappeared and my lungs filled with beautiful green gunk. Some cipro nipped that in the bud over the long bank holiday, but I still have a tight chest, temperatures, and episodes of throwing stuff up. It was one of those admissions from clinic which hasn't happened in years, and it's quite adventurous! I'm being hit with steroids, fluids, meroprenem and an anti-fungal in case theres some of that lurking in the hidden depths, and people have to enter my room wearing full on nucleur war gear (apparently they're protecting me as my white blood cell count is low, but I can't help but fell dirty AS.) I'm hoping this is only a two week jobby, which would be dreamy - better than 2 months! I'll keep you updated on nucleur warfare (think ET), until then i'l just be chilling in my Brompton bubble. Enjoy the last of the summer wine, but don't despair, we have gorgeous times ahead.

L x

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.

A very merry un-birthday

It was surreal being back at Addenbrookes last week for my biopsy. I was in the room next to room 23 where I spent the majority of my stay (room 24 now I'm 24!), but the same green rural view. Now however, the fields that before were dusted with snow are now full of chunky diggers as the work starts on what I presume will be the new extension of the hospital. I was only there for one night - my results came back late afternoon which showed slight rejection, but should be sorted by increasing one of my drug doses. A slightly shorter stay than last time eh!

All the slight niggles that were bothering me in the last post seem to have been resolved - I had been started on an aminophyllin tablet which aims to open the airways, and hopefully stop my breathlessness. However the doctors thought it could be that which was making me sick, and on stopping it i've been feeling much more myself. The breathlessness is still an issue - it's not debilitating, however being used to such reasonably dreamy lungs I can't help but feel constrained by this onslaught of tightness. It is an issue, and I seem to now have a constant reminder of shitty lungs which takes its toll mentally. I've been lucky never really feeling like this before, but I can now see how it can prevent you just doing normal things.

It's also pretty safe to say I still have a blob head. Chipmunk cheeks. How long on god's green earth does it take for steroid shit to get out of your system? I've even been naughty and stopped my overnight feeds to see if losing weight will help, but it's the same. Chill, i've re-started my feeds now like a good girl. My appetite seems to be slowly creeping back too which despite the mental tug-of-war with my weight, i'm really pleased about.

Continuing my naughty streak, I didn't renew my gym membership so havent gone to the gym in about 3 weeks. What I keep telling my mother is that it's just too hot. That is a perfectly acceptable reason. I don't want to drown in my own sweat or, I dont know, get heat rash? I think it's fatal. Thankfully, as I write those grey clouds are closing over, the sun is deciding that torturing us was fun while it lasted, and drops of rain are starting to land on my window. These few days of rain and storms have heralded in the cooler weather, and therefore the start of Laura being good again. (I think?)

I won't completely shit on the summer; my favourite part is lying in bed at night, windows and blind wide open, watching the sky and feeling that very welcome breeze. I normally sleep with my blind closed, but I now find myself counting stars, watching planes that are like stars on steroids and the surprising speed in which milky grey clouds stream across the sky. Then seeing a bug fly in, freaking out and spending half an hour trying to find it and squish it, not always successfully. (Now i'm tethered to the feed pump again i'm thinking I might close the bloody window...)

Anyway, i'll leave you with a picture of probably the best item of clothing ever. Yes, ever. I had my 6 month sparkly bits anniversary last week (mum threw a little party lmao). Happy half birthday LIV II and Panc II and bit of gut II. Hope you're happy in der.

After the storm...

It's been super being home. I've been doing normal, lovely stuff, whilst soaking up this glorious sunshine. Even if I despise this current heat, the sun has definitely been making my 6 weeks of re-adjusting pretty sweet and sparkly.

I've had a great mix of taking things easy with living life to the full again. Some days I chill with my puss cat in the garden or on the sofa, indulging in wonderfully crap TV, eating ice lollies. Other times i'm whizzing out, seeing friends - I went to the ballet one afternoon on a whim - and cycling round the parks and quite streets near by. I've actually been cycling a lot, my run of low lung functions whilst I was in the Brompton spurred me into this crazy 'get fit' routine, and now I feel bad if I dont go for a cycle everyday. I don't, but nearly! I also joined a gym. I know right. I'll let that soak in, for god knows i'm still soaking it in. Again, it's things like this that lead me to believe the surgeons did in-fact tamper with my brain. That suspicion just grows everytime I embark on another ludicrous notion such as this gym malarky.

A gym.

So there I am, about 3 times a week, puffing away on the cross trainer, or looking like a sexy wet beetroot on the treadmill. Sometimes I despair that i'm the sort of person who goes to a gym. The worst bit is, I cycle to the gym, just to cycle going nowhere in a stuffy grey room (listening to Robin bloody Thicke on the tele) for half an hour, then cycle home. Anyway, all this stupidness is paying off, because at clinic on Monday my lung function was 50% and 74%. My best ever is 60% and 80%. Woohoo! My FVC is only 6% down from best ever! Chuffed OR WHAT. I'm also over the moon my steroids have finally stopped, so maybe the face I once knew can now emerge from the bloated mass that's currently residing on my head. Of course, everyone says it's fine, but c'mon. I know what my face should look like. My weight has also rocketed up to 47.2kg (I gained a kilo in 10 days!), so the shudderingly fragile limbs that I once rocked are slowly becoming slightly more normal looking! It feels great.

It's not all fantastic - despite my awesome weight my appetite is utterly dismal, i'm incredibly tight, I have these weird waves of nausea that no-one can work out what the cause is, crazy headaches, and the initial whoosh of feeling incredibly perky seems to have lulled somewhat and I find i'm gradually waking later and later. At Addenbrookes today, they said they want to do a liver biopsy as my liver levels are slightly raised, and have been for a few weeks. I hope whatever is annoying little Liv II can be easily fixed. I also have a hernia operation planned, though I asked if it's possible without a general just a local anaesthetic, as I dont want another lung collapsing! It is, but he's pleased i'm a "brave lady". I said, "Gimme oxygen and 3 pillows and it's all gravy." We'll see how tough I really am eh! (HOLY SHIT)

I've also been forming plans about what I want to do - as it seems you have to get a job to be a respectable lady these days. Ladies of leisure are on the wane. I think I want to go into advertising, so i've tentatively been hunting for paid internships, though of course getting distracted by cats, and Home and Away. And the internet. And clinic appointments. And sputum. And Big Brother. There's maybe an opportunity to do a paid internship at a Law firm too, so i'll have a think. To be honest i'm in no rush, as i've only been out 6 weeks, and obviously things are still a little fragile. I'm also beginning to realise these so-called 'proper' things dont allow for watching Aussie soaps as a matter of urgency, which is taking a bit of time to get my head around.

It's just refreshing knowing that I can think about these things, and as long as nasty chesty bugs hold off and liver biopsy results allow for an easy solution (pray to the science god), there's not much to stop me. POW. Here's some sexy not so sexy shnaps:

A 'chillin with cat bum' selfie

A 'drinking cocktails' selfie

A 'making the most of a Cambridge clinic visit' selfie

Checking in

Going for a wander down Blog Post Memory Lane was a surreal experience. 

I'm now worried I'll never have anything so dramatic or poetic to write about ever again. Real life pales in comparison to that upheaval only something like a transplant can bring. 

I have no choice now but to create some scandal, to experience some earth-shattering existential crisis, go on some trip to the moon or summit. 

I have a few clinic appointments early next week, both at the the Brompton and at Addenbrookes, so I'll outline the progress of my smooth sparkly new additions as well as my delicate old ones then, once I have some new exciting info (or not?). It's been a little up and down since I've been released from the safe confines of the hospital walls, but nothing too volatile. It's been exciting. It's been an adventure. There's been a lot of driving...

Fully Institutionalised

All the negative points about spending nearly 4 months in hospital seem to be submerged by this overriding notion that i've just spent 4 months improving my life. Yes hospitals drag, but every day has been filled with some exciting riddle of how to make things better. It's hugely satisfying. 

It's been exciting, its been interesting, its been confusing, its been tedious, its been frustrating, it's been upsetting and it's been uplifting too, but every little thing (no matter how big or small) has needed to be figured out and fixed, and so i've felt like House for 4 months. Obviously not as old, suave, irritating (questionable), or brilliant, but I find it scarily fun trying to work out how to solve these new riddles my little bod has been presenting me with. I know that's the doctors' job, but i'm not a passive patient. Passive patients are lame. 

The most boring part was when I was on plasmapheresis, because that was just a 2 week waiting game.  But even this long Brompton stint has been a learning curve - my body has changed, new bugs, new hurdles, new complications, new organs to contend with and look after. I've found a huge sense of satisfaction at viewing this as a massive total body rehab, suddenly the tedium of going to the gym has been replaced by this craving for self improvement - I want to leave the best I possibly can, everything as sparkly as my new additions. I was also determined not to leave this joint not feeling good - there's no point spending 9,849,600 seconds in an institutionalised bubble to leave thinking 'what was the point'. After a million seconds they all seem the same. What's another million?

Leaving this structured institution will unleash a whole new can of worms. Such as the 'Where Is The Tea Trolley' worm, the 'Why Is Dinner Not At 6' worm, and the 'Hang On, I Have To Make It Myself?' worm. But they will somehow be overcome. It may take another 4 months, but I suppose it's like a break-up, i'll get over it eventually. Or I won't, and you'll find me either catching coughs or stealing stuff to end up back in a place where real life is non-existant and there very well may be bars over the windows. 

So yeah it's exciting but also scary, maybe it's suddenly being presented with time, space, reasonable health and an Alladin's cave of options that is the most scary. And I do leave with health - a lot of it. My lung function is only down 15% from my stable best (ever), and without any other liver or diabetic problems and complications to contend with, i'm pretty super chuffed. It's unreal. (Is that all I can think of to write?! Yes. Words suck at this.) As they say, the world is now my oyster, and with a free oyster card, I have a bloody good oyster to explore! Funny... i'm not allowed to eat oysters. 

Extended confinement at Hotel Brompton boo hiss

Yeah I knew i'd spoken too soon.

It went like this:

IVs randomly stopped > cold > nastier cold > cough > nastier cough

So um, another 2 weeks of IVs.

On a brighter note, JLS have split, which gave me a whole day of fabulous tweets, mostly from that Katie Weasel account and the #JLSwewillneverforgetyounotevenindeathbutImightaswellbedeadcosmyheartwontbeatagain hash tag. (Or something along those lines).

I saw this last night outside my room with a "To be condemned" note on it (one of the notes had lots of exclamation marks - some freak physio must get a litte rowdy at the thought of incineration/ putting something outside for the bin men), so thought i'd bagsie it to take home (exercise bug is still here... this is getting worrying). But then the one I wanted magically slash maliciously disappeared this morning leaving the other, substantially scruffier, one. However my stealth sign manoeuvres were all in vain as the physio said I wouldn't be allowed it, or either, ANYWAY. What a meanie. She obviously takes pleasure from others' pain (both humans' and machines' - at least she's not discriminatory, thank heavens for that) and so it was obviously her that took great delight in condemning those poor bikes to some mechanical hell. It was written in thick, evil,  red marker too. (Blood is a now a precious, heavily monitored commodity in hospitals (thanks NHS cuts) so no more scary notes or death threat letter-fun-times to be had). It's all a load of bureaucratic "health and safety" rubbish - why make us poor sick weak people suffer at the hands of an invisible Physiotherapy Tsar that dictates that because something is old it is dangerous and therefore unusable by those who desperately need it? Disabled abuse that is. Disabled, cheapskate abuse. 

Anyway I soldiered on through the heartache, only to be confronted by Mr. Consultant who made me burst into tears at the news my lung function is really shit and probably will never be as good as it was before transplant. Look here yeah, the deal was this would make it better, so I may consider asking for a refund. But then he said he actually hadn't looked at my X-Ray (to see if my diaphragm has been cured of it's vertigo and has come down), and was going on my snotty-cold lung function blow I did yesterday... mid fever-y cold. What a knob. So I was going to try pretend today didn't really happen, minus heart-broken fans, because they're funny.

However, I then pestered little junior doc ("Putty" I like to call them), into actually going to look at said X-rays - one from the beginning of my admission and the recent one, and lo and behold, how the mighty should have kept his insensitive trap firmly shut. Whose diaphragm has come down? Oh yeah. Given, not all the way, but the spectacular dome has now turned into a mild mole hill. (I'm going to stick with mild mole hill as that aliteration works nicely, but I don't actually know what a mole hill looks like. I think it must be flatter than a dome. This lack of mole knowledge is probably the one downside of living in a city.)

My theory was how do they know it can't be fixed given they don't know what caused it? It's not right that they can shatter my years of hard work, my FVC dreams*, my illusions of grandeur in one fell swoop. I know I said previously I like to know everything to do with my health, but with some things, especially ones that can't be fixed, I think i'd rather be kept in the dark - at least so I continue to strive for better instead of giving up. That's a dangerous place to be, and not a very nice one.

So i'll keep going with trying to get it down even more so I can fill these little things with as much air as I can, and getting rid of this god forsaken bitch of a cough. It's such a twat.


*Change "FVC" to "PVC" and i'm on to a porn-film winner.

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.