Friday, 27 September 2013

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?!

Tuesday, 10 September 2013

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

Sunday, 1 September 2013

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.


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