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."

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...!)