Sunday, 23 December 2012

Dear Santa...

Top of my crimbo list this year was two things, in equal joint place. Liver and pancreas. I don't normally do 'soppy'/ Tiny Tim / whole-heartedness/ 'as long as I have my health i'll be the happiest girl alive' and all that vomit inducing selflessness, but at this point in time, I really don't care a jot about the Coca-Cola commercial christmas. Saying that, I have asked for Supernatural on DVD and a few more JG Ballard books and a short pink wig. But that's it (lols). All I can think about is some new organs and how that would be the best present EVER. This would be a good year for Oliver Cromwell to return from the dead and cancel christmas (fucker), because I wouldn't care. I just want my new lease of life to begin. OK, after my Christmas dinner calorie fest and Downton Abbey preferably... I keep having this morbidly funny image of Santa dropping down the chimney dressed in scrubs and brandishing beautifully wrapped organs, before performing surgery between mince pie and milk breaks. Enough. Sorry.

I remember last christmas, when I had just received my transplant assesment letter through the post, I thought 'Next crimbo I might have sparkly new organs!', but that glittery dream hasn't materialised. Still, i'm awfully thankful i'm not fighting tooth and nail for my life, like many waiting for lungs are. At this point I think it's not a matter of saving my life, but enhancing it. Of course, like failing organs do, without a call my liver will eventually pack up and leave town, like in my Ballard book, south into his inescapable and deadly inferno. A place of no return. But not yet. It's just slow, and groggy, and tired. Like me. Very tired. And making my life shit.

I went out to celebrate the end of the world the other day, and even though the world didn't end, I felt pretty apocolyptic. My hangover lasted two days, despite alternating alcohol with diet coke and water. It's ridiculous, thanks liver. I really didn't drink that much at all, but it felt like I had been on a week long bender. And don't give me funny looks, because I know exactly what i'm doing. (Plus i'm getting a new one, innit Santa.) It had been about a million years since i'd mustered up enough courage to venture out, but i'm pleased I did, as it was quite an eventful night, seeing people (well, one person in particular) I haven't seen in what feels like an eternity.  Still, no amount of alcohol induced fun is worth feeling so terrible, nor is it worth the chance of a liver meltdown. I dread the day I wake up, look in the mirror, and see that sickly yellow sheen again.

Anyway, I'll banish these morbid thoughts, especially as it's Christmas eve eve. It's odd how at these milestone occassions positive thoughts of forgetting troubles and having fun collide with an inevitable undertone of sobriety as all that is important to you becomes so prominent in your mind. It puts things in perspective I suppose. About what's really important. I'm not saying a Supernatural box-set isn't important, but you can live without it. And there's some things you can't. So to all those hanging by the telephone, I hope it rings soon. But until it does, enjoy the mince pies. And the turkey. And the mulled wine, and the roasties and the parsnips and the cranberry sauce and OMFG IT'S CHRISTMAS!!!!



Saturday, 8 December 2012

Life in a onesie

This is one of those blog posts where I apologise for not having much to say, but still go and write it. So, I don't have much to say. Sorry! I've been living under the radar, where it seems all combinations of tedious bugs, bacteria, colds, coughs, liver troubles and hypos can't find me. I've been steady for quite a while which even though dull and doesn't make for a good blog post, suits me just fine. More than fine. My stealth manoeuvres (which mainly consist of moving from bed to the sofa to the fridge and back again wearing a fetching leopard onesie) may not lead for the most exciting of lives, but a trouble free existence. That's all I want right now. An existence suits me just fine; Life can resume when Dr Frankenstein has worked his magic. I still call a fridge raid and shuffling round the house a 'stealth manoeuvre'  to inject some excitement into the banal... and queue Mission Impossible theme. Little pleasures.

I've had no calls, not even false alarms. I do feel a little forgotten about in momentary flashes of woe, but transplants are not something you take personally. These moments sometimes extend into reflective and contemplative episodes, where the enormity of it all and that rare pang of fear jumps in and surprises me. I don't get it often - excitement swirled with a christmas eve-type of anticipation tends to be the overriding feeling. Mixed into this concoction comes the frustration. Not just frustration at these months of waiting, but at how house-tied I am because of how I feel, and how I look. It's tiring and draining physically and mentally. If i'm being honest I think it's more mentally at the moment. I'm probably looking 9 months pregnant now, and you can't hide a bump that big. Trust me, i've tried! It sends me into a dark downward spiral, that before I was put on the list, I could hardly clamber up out of. Like Alice drowning in her tears in a similarly hypo-ish Wonderland. Since i've been on the list that sinking feeling doesn't swoop down on me quite so intensely as before, because now I now that it won't be like this forever. But until then, it's still easier to melt back into a onesie and a duvet and hide myself away from the world. When I sleep 13 hours (plus naps!), that's not too hard really...

Saturday, 17 November 2012

Extra Large

Clinic went well today (despite the long wait at the beginning), so here's a wee summary!

Lung function is about the same as clinic 6 weeks ago - 56% FEV1 and 80% FVC. I always write down both because most of the time people just say one and I have absolutely no clue which one they're referring to! FEV1 is how much you blow in the first second, and is a good indicator of how your airways are - ie tight etc. FVC is the capacity - so 80% of my lungs are working! I know CF guys will know all this, but for those not in this weird and wonderful little world that's the low down. I'm very chuffed about the capacity - it seems to be getting increasingly better which is quite odd for CF. Physio said it's definitely the cycling. 56% is apparently OK for me (last year was averaging down in the mid 40's), but I like to have the two readings at the most 20% apart... there's a little bit of OCD creeping in...! (You can see how much my FVC has improved then too... the 20% difference I used to have would make that reading in the 60's!) So i'm going to give these fickle, sensitive airways a talking to and make them chill out. 

Weight was up! By 2kg! In 6 weeks! I really have no idea how that happened since my appetite has fluctuated drastically over the last few weeks, spending more time on the 'non-existant-side' rather than the 'gimme-the-bloody-chocolate-cake-side'. If I think logically, every time my appetite has decided to show up I make the most of it, and shove anything fatty and calorific down my gob. A couple of days ago, for example, I fried up a whole tin of spam. A whole tin. Thats just over 1000 calories, with the oil. I am not kidding one little bit. And then I heated up some pasta and put lots of butter and a bit of cheese and ketchup on it. But even with calorific monstrosities such as that, I didn't think it'd make up for all the days I haven't been eating much at all. *All hail the spam*. 

The doc then flicked through my notes and said that this time last year, I was 43kg. 9kg in a year! That's just under 1 1/2 stone! Again, mega happy me! I do think a chunk of that is liver + spleen, we guess 3 or 4 kilos, which is quite daunting. I've never physically noticed any weight gain (like ever), however last week I unearthed a pair of jeans I used to wear all the time at uni and HELLO couldn't even fit them over my leg! I thought they had shrunk and swore at them for being so crap, before flinging them across the room with a rather annoying melodramatic flair  ("Oh! my trusty jeans how could you do this to me!"), but now I take it all back. It was me, not them! *All blame the spam*

We then had a delightful little chat about bowel habits and gastrograffin. I'll spare you the details. (But gastrograffin was the reason I had to wait at pharmacy for 45 minutes when i'd rather of been having a McDonalds. I got the chicken nuggets eventually, thank fuck.)

So a pretty productive check-up. Not productive in a phlegmy sort of way, dry as a bone I was. Have to do a cough swab almost every time (!) (You want my gunk? You not getting my gunk!) I hate mucus. Eurgh.

Tuesday, 13 November 2012

Darkness Reigns


Winter is most definitely here. In the dead of night, through the crack in my blind, I can see the windows seeped in moisture as the bitter air clings to the warmth within. By the time I get up (which every day seems to be becoming later and later) the house is bathed in heat as the heating has had time to fill all the rooms - except mine, where my radiator stays fixed on zero. I don't like the cold nights, but equally I don't like the heat. In the morning my nose is dry, my chest is tight, my skin is parched, and my head is screaming. So instead I opt for the cool - which with it brings a loose cough and a clear head. Up until a week ago I had my fan on every night, which my mum didn't exactly like the idea of. Mums eh. But it shifted that morning build up of gunk in one fell swoop! Fantastic. Of course, despite my hankering for this chill, you'll still find me cocooned within my duvet nestled between a big bundle of warm pillows, which suits this hibernation chic i'm rocking these days.

I'm only up for a few hours before it starts to get dark. Normally with these short dark days comes that equally as dark and depressing feeling, as if you've been shot down before your day has even begun - clipped before you can bloom, truncated before you've reached the good bit. But this year it doesn't bug me too much. Firstly, i'm not exactly doing anything that involves the outside - i'm not trekking home from school, from work or to anywhere. I haven't gone to the pub in ages, or well, anywhere for that matter that involves an insane amount of trudging through the dark and the damp. I don't need to and I don't want to. Secondly, I have a flippant hope my transplant call will come soon*, so then the majority of these few months where darkness reigns will be spent in a timeless bubble, where the structure of days and the steady logic of the sun rising and setting will become obsolete. There'll be a lot of darkness I imagine, whether that be in sleep, in curtained off bays, in operating theatres, in darkened rooms filled with machines. It would be nice to re-emerge out of my cocoon into a season filled with sunlight - a sunlight that extends and grows day by day as if the majority of winter didn't even happen. Miss out a chunk of the endless months of black and rejoin humanity just as everyone else is thawing out their butterfly wings too. Mine'll be super shiny.

Health wise, things are pretty stable. My chest is continuing to behave - I have odd days where my cough increases, feel a little run down and I feel like i'm on the brink of developing something potentially nasty and annoying, but a boost of calories, rest and lots of nebs luckily keeps things in check. Liv the liver has also been pretty good and steady for a while, though the last few days a series of little things have happened that independent of one another I wouldn't be concerned about, but all together make me think my liver is taking another wee tumble. I think it's annoyed that I said cauliflower is disgusting. Given it looks like a cauliflower. Sensitive, pathetic soul. I'll spare you the details, but i've got Addenbrookes on to it, who hopefully will say it's me being sensitive, not Liv!

Now i'm going to curl up next to my cat and have a nap. She has pancreas problems too, so we can bitch about that and dream of sparkly new pancreases (and livers) together.



*I know I always write 'hope my call will come soon', and it's getting very annoying. But surely one of these days that'll actually come true!

Tuesday, 30 October 2012

Filling days



I haven't been completely useless these 6 months.

I have a job every friday, aiding an old family friend through his quest to publish some books. At first, I was cataloguing and organising his wealth of Victorian stereo-photographs - you look at them through special specs and they're 3D! They're quite amazing, especially the ones of Tintern Abbey, a handful of wars, and all these Royal occasions - and all from the mid 1800's. There's been lots of other things in-between, but now i'm about to embark on sorting out a little Victorian girl's diary, and a big bundle of letters. It's very Downton Abbey-ish, discussing scullery-maids and other things from bygone days. I get paid in money, tea and endless biscuits. And the odd jar of homemade jam, yummy.

I do other stuff too. And it's this other stuff that has really kept me sane throughout these few months. I have such fun gossipping and chatting and helping and planning, that as much as I bang on about feeling adrift, i've found i'm floating on rather a fun little ship! (Thank you :D)

Admittedly, I haven't done nearly as much reading as i'd hoped, and I haven't tried drawing a single thing, but i'm not going to beat myself up about that. You make grand plans as you try and capture this precious free time, yet it just seems to slip through your fingers and trickle away.


Saturday, 20 October 2012

Drowning

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

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

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

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

Fantastic, huh?

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

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




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

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

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

Wednesday, 10 October 2012

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...!)



Thursday, 4 October 2012

Tuxedo Times Two

As it's National Poetry Day, and as it is ALSO National I Love My Cat Day (which is everyday btw), I thought I'd post a poem that was basically written about my 'dear little cats' a.k.a 'jellicle' cats: Sky and Snowboots.



    The Song of the Jellicles

    Jellicle Cats come out to-night
    Jellicle Cats come one come all:
    The Jellicle Moon is shining bright -
    Jellicles come to the Jellicle Ball.


    Jellicle Cats are black and white,
    Jellicle Cats are rather small;
    Jellicle Cats are merry and bright,
    And pleasant to hear when they caterwaul.
    Jellicle Cats have cheerful faces,
    Jellicle Cats have bright black eyes;
    They like to practise their airs and graces
    And wait for the Jellicle Moon to rise.


    Jellicle Cats develop slowly,
    Jellicle Cats are not too big;
    Jellicle Cats are roly-poly,
    They know how to dance a gavotte and a jig.
    Until the Jellicle Moon appears
    They make their toilette and take their repose:
    Jellicle Cats wash behind their ears,
    Jellicle dry between their toes.


    Jellicle Cats are white and black,
    Jellicle Cats are of moderate size;
    Jellicle Cats jump like a jumping-jack,
    Jellicle Cats have moonlit eyes.
    They're quitet enough in the morning hours,
    They're quitet enough in the afternoon,
    Reserving their terpsichorean powers
    To dance by the light of the Jellicle Moon.


    Jellicle Cats are black and white,
    Jellicle Cats (as I said) are small;
    If it happends to be a stormy night
    They will practise a caper or two in the hall.
    If it happens the sun is shining bright
    You would say they had nothing to do at all:
    They are resting and saving themselves to be right
    For the Jellicle Moon and the Jellicle Ball.


    T. S. Elliot



    video



    Sky is the one with the little white smudge on her nose. She's mine. Or rather, i'm hers. 


    Meow Pin up by Alberto Vargas



Thursday, 27 September 2012

Blah

OK, i'm totally bored, and have resigned myself to the fact that this tx thing might take forever. I was naively optimistic that it would happen in 3, 4 months, but the reality is that it could take BLOOMIN AGES.

So enough of this giddy waiting.

I'm going to go paint.

What will I paint? Whoooo knows.

And then i'll go to the Tate on Sunday to see the Pre-Raphs.

Then i'll think about how I can fill my days properly. Twitter doesn't count!

I have to get over this fear of going out because of my tummy and just do it. I'll just pretend i'm preggers and go baby shopping. OMG actually this sounds fun? I wonder if there are any free things for pregnant chicks? Like pampering things... foot massages, or spa treatments, or coffee mornings... LOL.




I've lost it.

Saturday, 22 September 2012

Control, ALT, delete

YOUR OWN, PERSONAL, JESUS.


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

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

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

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

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

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

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

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


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

Thursday, 13 September 2012

Out, damned spot!


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

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

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

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

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


This living hand, now warm and capable
Of earnest grasping, would, if it were cold
And in the icy silence of the tomb,
So haunt thy days and chill thy dreaming nights
That thou wouldst wish thine own heart dry of blood
So in my veins red life might stream again,
And thou be conscience-calmed—see here it is—
I hold it towards you.

                                                  John Keats

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

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



Monday, 3 September 2012

Reporting... not much?

Nothing very much to report these days, life has been extremely uneventful. I keep forgetting about recieving life changing calls from Addenbrookes, i'm almost convinced this is all a huge joke. Putting my phone in my pocket wherever I go now happens through relentless and mind-numbing routine, rather than the apprehension of recieving a call. I now find I can go a day without even thinking about transplants. My heart doesn't race when my phone makes a beep (text) or a squeek (twitter) or a rattle (med reminders) or a pop (facebook) like it used to, but it does still kind of do a funny little skip when I get a call - a sudden reminder! But people don't call me that much (3, 2, 1, awww). September has even arrived, Home and Away has started back up again... all these little things I thought i'd see with two new organs have been and gone, lost to my fickle world of superstition, coincidences, pattern and luck.

So instead I treck to and from my fortnightly hospital check-ups, with nothing new ever to report. Today, like the time before and the time before that, my weight was up a teeny bit, lung function almost exactly the same, nothing exciting, no new hurdles to overcome. It's reassuring and good. Good, but dull nonetheless.

I also have so much time. Bundles and bundles and bundles of time. To do what? What have I done with this rare luxury?! So many people pray for time, more time to do whatever they desire. My time seems to be eaten up NO gobbled up by some invisible time consuming monster. Actually, I think this monster's called 'Twitter'. What a waste. I still have a huge pile of books to work my way through (Ulysses included - I wanted to read Ulysses for some god-knows-why reason - to kill time? To kill me?), but most of the pile remain untouched and unloved. I've been reading the same book for months. I footle about on the internet until some horriffic hour, read only a couple of pages, then sleep. I wanted to read! I wanted to paint! I wanted to learn the saxophone! (OK maybe not, but why not!) So thanks silly twitter/demand five/iplayer/amazon/blogger/iwantoneofthose.com for absoloutly nothing, you dumbasses.

(I'm sorry, I love you really internet! I watched Tom Daley's 'Sexy and I know it video' the other day - but i'm not going to say anything because he's the same age as my little brother and makes me question my sanity/ hormone levels.)

(And also, the internet is the only thing I have left that is close to the real world (this can't be right, ed.) given I will only go out if I am forced to thanks (in part) to the security lady at the Paralympics who said: "Here, walk round this way to avoid the x-ray machines, you don't want to be going through those, love". Don't LOVE me, i'm not fucking pregnant. I smiled and thanked her (dearly, for saving my unborn child's life). The words final and straw came to mind. Soured my entire day out at the Olympic park. I just wanted to run home sonic-style.)

SOON, I keep telling myself when things like that happen. Soon. Until then, i'll just bury myself in a boo... sorry, Twitter. Obv.

Saying that, Twitter isn't helping calm my boiling blood at the mo. This relentless limbo has trapped me in a world revolving around CF. See, all I ever talk about is transplants. And CF. And more transplants.  And it bores me, so I apologise profusely if it bores you. Twitter, as much as it entertains and can comfort me, winds me up too. Too much whinging. I can't wait until I have something better to do so I don't have to be constantly surrounded by whiney reminders of this shitty disease. It shouldn't consume so much brain space. Doesn't deserve it, really. It has it's sticky paws on enough organs as it is, greedy bugger!


Sunday, 26 August 2012

Sleepy echoes of carnival and clubbing

BLURGH the last few days i've been completely shattered! When i'm more lethargic than normal there's a whole lotta things I look out for to determine the cause, but this time i'm completely clueless! It's a pain, because I just dont know how to fix it. I've had massive sleeps, eating loads, not sciving on meds, but it's a mystery. All I can think of is that it might be my liver being boring and eating up all my energy, but it's never usually this devilishly hungry.

I had an echo the other day, to check my heart. I think my gastro/ endoscopy doc wanted it checked because he said if I start bleeding again, it'll be from some other place inside (he seemed to know where, mr Psychic Doc). They'll then have to do a different procedure (ie not banding the varicies), and for that will need to know how my heart and veins etc are looking. He didn't go into much detail, but it seemed a little more serious than a simple endoscopy and tying a rubber band around bleeding blood-vessels in the food pipe. Eek! I hope I won't need to find out more about this enigma, and will get my new liver before things turn even more dire...! But my heart is fine, which is good to know! That day however, my mood was not, as the silly appointment was at 9 o'clock. That day felt so long! I would think it was tea time, but it was midday. I wanted dinner, but it was like 3. It was like some annoying eternal day. I suppose this is the real world, as opposed to my sleepy nocturnal world where the majority of it is in darkness. Made a change, and actually, despite that mini-rant, quite a nice one...!

It's been CARNIVAL weekend. Yes, Notting Hill Carnival is fantastic. I, however, spent it in my garden with my book, my cat, haribo, and ginger beer, listening to the neighbours and the distant boom of sound systems and hooting horns and police helicopters. I've had some fantastic carnivals (free rum punch!), but this year I gave it a miss. Too sleepy and didn't want to get elbowed in the spleen. Yoww. Tomorrow I may venture out to the food stalls, pick up some plantain and a coconut to drink, but i'll see. (Look at how cute my Sky cat is!)




Also made a discovery! The last few months i've thought my nails looked even more clubbed (ie rounded and bulgy). Clubbing is tres common in CF, but they were never this big and nobbly! So, my new discovery is that nails can also become clubbed with liver cirrhosis - CF or no CF! I'm now hoping post transplant they'll return back to their normal only slightly clubbed selves. I know I know they're only nails, but they're getting tricky to paint haha. And kinda uglyyyy. Also noticed it's technically called 'digital clubbing', which sounds all high-tech and made me think i'm totes cool. Down with the kids YA KNOW. Fancy a forest rave? Do the robot? Maybe i'll paint them in neon colours and start a CF 'in' joke.



Ew!


Wednesday, 22 August 2012

Cycling and Sirens


"Under the Westway... where I stood watching comets lonesome trails, shining up above, me the jet fuel it fell, down to earth where the money always comes first, and the sirens sing." 
- Blur, Under The Westway



I've been going cycling almost every evening. The days are too hot and busy, the night is just perfect. I've found a circuit that is almost completely car free - nearly 3 miles of weaving between estates, walkways under the Westway and quiet Notting Hill streets. The breeze is wonderfully cool, I can feel my puffers breathing in that night air, reaching new deep dark and dusty (gunky more like) depths. My leg muscles pump away, arm muscles reacting to every bump, even the ghost of my former six pack is stirring as my core tries to keep me upright, "remeeember meee" it croakily, fleetingly whispers in the wind.

It feels good. Even the wibbly wobbly jelly legs as I step (stumble) off is a reassuring sign that things are working - wasted lazy legs are waking. Hibernation is over suckers. One minute later they're fine. Tomorrow, they won't, as a faster, longer route awaits! I do a little cough, maybe a huff, shift a little blob. Not much to be honest. That's how I like it.

I like the distant roar of the Westway, the distant wail of the sirens on Ladbroke Grove, the distant rattle of the hammersmith and city line trains. I just like night time; stolen time away from burning heat and burning eyes. I'm only comfortable in jumpers, and jumpers in 30 degree heat is just bonkers. The darkness means I can also leave the house without a jot of make-up - I feel so liberated! Liberated and freeeee. My only restraint is to be back by 10 to watch Big Brother. And even that's on +1.


My red arrow route.

Friday, 17 August 2012

Redheads kicking butt

I'm not going to review every single film I see, but this one definitely deserves a mention! I went to see Brave with my mum (yeah, my mum. It's a very mummy/daughtery film), because being a redhead, how could I not. I want to support Disney Pixar's first ever female protagonist. First ever! I think it's ludicrous how Pixar, after what, at least 10 years(?) of fantastic films, have never had a female lead. Not very good. Big tut tuts. So, in this epic week of girl power (SPICE GIRLS FTW), Merida takes pride of place. And how perfect to have a lead who is a fiery, independent, beautiful redhead - about bloody time!


No way! I shoot arrows too!



What I was most moved by (yes moved, I was very emotional), was how unlike Disney princesses of yesteryear, Merida didn't need a prince. There was a happy ending, but that happy ending didn't revolve around her finding true love, getting married and all that traditional frankly outdated palaver. It was all about breaking tradition and controlling your own destiny - whatever you want that destiny to be. I can't help but feel a swell of optimism of how this young generation of little girls will grow up with role models like this - head strong, determined, courageous and independent, rather than the majority of princesses we were all brought up idolising - ones who, for them, only desired to find their Prince Charming. And not Princesses who are always pristine, neat and practically perfect in every way, with skin as white as snow, lips as red as roses... no, princesses with wild unruly hair that matches the untameable soul inside - a rugged natural beauty that stems as much from the outside shimmer as it does from an infectious spark within. I didn't need the 3D goggles to gauge how much depth Merida had - a multi-faceted diamond of a lass inside and out (the 'out' thanks to the incredible animators, seriously, wow). Did I mention she was a redhead?! Not blonde, not brunette, a redhead! Yes yes, there was Ariel, but c'mon, her hair was totally dyed. This was ginge. True ginge. I was bursting with pride!

As lovely Merida was big on escaping fate, and controlling her own destiny, I began to realise how far away from my normal self this transplant situation has made me. Normally, (blowing my own trumpet here) i'm quite similar to Merida (yay!) - I believe if you want something to happen you go out and you get the oil and you get those cogs moving, not relying on some external power to decide what will happen for you. But waiting for a transplant is different - you have no other option but to sit and wait. It's a disconcerting feeling of powerlessness. Yet on the other hand, because there is really nothing I can do to control what is happening, I can indulge in this guilty pleasure of pure passivity and let archaic and somewhat alien notions of fate and magic play with my thoughts (in case you haven't realised!). It's a bit of a treat. I'll chill out in this dreamy passive timeless frozen (almost)care-free floating bubble humming 'que sera sera' until my gaudy pink mobile rings and bursts it. Then afterwards back to reality i'll go, fighting fit and ready to shoot fate and destiny down with a well aimed arrow. I'll be so fed up of doing jack shit that i'll probably like, marry a prin... I mean, hunt down a job and a career! No rush though. This is kind of a biggie.

But yes, I want more princesses like her. We need more princesses, heroines, protagonists, role models like her. Pixar, you dun good. And it was funny too. But i'm never going to a PG film at the cinema again. So many crying babies and talking kids and kids eating and kids crying and mums shushing... argh. Kids.


I also want to mention my Podhaler. I've been using it nearly three weeks now, and it's really been quite life-changing. It takes a bit of getting used to because the powder can be really harsh on the back of the throat and makes me cough like crazy. But it's so quick - 5 mins tops, and because it's so speedy speedy, I find I actually take my Tobi much more that I used to. Before, with the neb, I used to sometimes not do it especially if there was no clean nebuliser bits or was in a rush to go somewhere, it just took so much time and effort. But that's not even an issue now, so i've hardly missed a single dose! To avoid the tickle and the coughing I often take a much more gentle breath in, which just means I end up having to take 3 inhalations per capsule rather than two to get all the powder. But that's no biggie.

If you CFers aren't too hot at always taking your nebs, I would recommend asking about and trying to get the podhaler - you might find you're more likely to take your meds more often. I'm always quite compliant with taking my meds, but we all have our off moments where we just can't be bloody arsed. I find I now have less of those, which both my conscience and i'm sure my lungs are very pleased about! I have it on good authority that my lungs are happy, as my lung functions at my 2 weekly hospital appointments (I know, 2 weekly, so lame) continue to get better! That is why I now kick butt, just like my on-screen doppelganger.

Tuesday, 14 August 2012

Clouds and beds and ducks

Have been at my gran's down in Sussex for the last few days, enjoying a mini holiday complete with seaside trip, pub lunches, country high street shopping, chips (lots of food full stop!), and a big fat double bed. I wish I had a double bed. It feels like sleeping on a big cloud where you can sleep in whatever direction you wish and everything you need can be scattered around the outside - books, jelly babies, phone, blue puffer... like some self-sufficient magic platform. Never need to get down. The amount of times I nearly fall of my single bed or have to like, you know, reach all the way down to get something. Honestly.

Tomorrow dad and I are off to Cambridge for a transplant check-up and ultrasound. Gutted that i'm not heading up there for a more exciting reason... oh well. It's an early start, actual early, not my-books-early. I want to be 51kg at least, but my recent eating drought probably won't have helped very much. Time to pile on the bling, Snoop Dog style. (He's hip hop, right? Doggy Dog.)

I now have a funny image of Snoop Dog sipping fortisips...

My spleen is sore. That's the only thing that ails me at this moment in time. But it's always sore. Tender is probably a more accurate way of putting it - it's uncomfy lying on my left side, and it's also uncomfy lying on my right because my ribs dig in and poke the bugger. I would lie flatter to stop the rib poking thing, but if I do I end up coughing blood which is just a nuisance so I prop myself up on this wedge thingy. Just so happens I bend in just the wrong place. I have this hug-a-pillow routine that seems to work, which I suppose also reveals some deep emotional stuff about me. Like a pillow fetish? Maybe it's my subconscious mind clamouring for feather pillows - that luxury that I used to indulge in until those ducks plotted their revenge and conspired against me to make me slightly allergic to their fluffy tufts. Win some, lose some.

But i'll sleep and probably dream of (hugging) David Gandy, mohitos and jetting off to Palau where the two former delights await me. Google image Palau. And David Gandy, why not. Everyone knows what a mohito looks like. Yes, then imagine all three together, and you have some insight into my brain. Golly what an insightful post about Laura's psyche!


Friday, 10 August 2012

A greek mythological feast

I've been slowly working my way through Robert Graves' Greek Myths. I've always loved Ancient Greece, especially the wealth of myths of heros and of gods, of creatures and of origins. But it was this book below that was my Pandora's box, though what was released was not all the world's evils - far from it.


Out jumped this fantastic world full of even more fantastic stories that has captivated me ever since. I read it in year 5 right after we did Ancient Egypt, and completely and utterly fell in love with all things Greek, and ancient. Odysseus became my 10 year old self's crush, even though this book made him out to be more like that equally as cunning and canny Bart Simpson rather than a true Greek Hero of Homer's vein. That was to come. (Pun completely intentional btw!)

In the interim came:

- Disney's Hercules. Just gonna put it out there - best Disney film. Who put glad in gladiator?

- I had this free Disney's Hercules computer game I guess from a cereal box, and messed about on that for years. I remember being chased by Titans on a volcano, and playing draughts with Hades' face on the pieces. High quality shit right there.

- Troy. Had the biggest crush on Orlando Bloom, though he was a horrific Paris and couldn't act to save his life. And HI BRAD.


Ancient Greece was a big love of the Romantic poets, so I was surrounded doing A-level English lit by poems and poems about all the myths I had grown to love. I'm not sure whether I came to love the Romantics because they wrote about Ancient Greece or the fact that the Romantics wrote about it made me love the myths even more... or whether all these loves of mine collided and hence exploded into some fanatic sized obsession that seems to just keep growing. Because add into the mix my love of pre-raphaelite art and we have some serious Big Bang expanding universe thing going on here. But first here's some links to some poems I absolutely adore. Click on them and read them, you won't be disappointed.

This is Ulysses by Tennysson. It is set when Ulysses (or Odysseus) is an old man, as he reflects on his life. From when I first met Odysseus as a little boy in Tony Robinson's book, to these last days of his life as seen by Tennyson, this poem, I think, captures wholeheartedly that infectious and vibrant spark Odysseus has always had, as he is saying even if time and fate have weakened me, my mind and my 'heroic heart' will never tire and never yield. I love you Odysseus! I want to be like you!

This poem is also by Tennyson and is called Tithonus. Tithonus was granted immortality so he could be with his lover Eos, goddess of the dawn, yet he was not granted immortal youth so he endlessly ages. In the poem he watches Eos as she rises and sets everyday, un-aging and forever beautiful, whilst he withers and crumbles - a 'grey shadow' of a man. My heart aches in sympathy - it's so so sad yet so so beautiful. "Why should a man desire in any way to vary from the kindly race of man?" I read this, and I realise: not me.

Keats' Ode on a Grecian Urn raises questions on immortality, mortality, art - quite similar to Yeats' poem in this blog post. I love the moment about the two lovers on the urn about to kiss but never able to - 'winning near the goal' - but they shouldn't be sad because 'forever wilt thou love and she be fair!'. As my english teacher said, they never have to experience 'all the annoying parts about dating and kissing and sex, like getting all sweaty'. It was a very cringe moment.

Finally, another one by Tennyson. Yeah, he was a bit obsessed, but damn good at it all so much forgiven! This is called The Lotos-Eaters, as is about when Odysseus and his men stopped at an island inhabited by 'lotus eaters'. The lotus fruit the men are fed is a bit like some of those Chelsea and West sedatives - makes you sleepy, happy, and forget about everything. This will sound a bit school-ish but I think is fascinating and oh-so clever: as the poem goes on the structure, rhythm and rhyme changes, and ends up in a lulling 'choric song' (that even has to be numbered, bless) as the men slip into a unified lazy slumbery druggy chant; very different to the beginning where "COURAGE!" alongside strength and determination is practically shoved down your throat like some over-ambitious American 'hockey mom'. Don't take drugs, kids. (Unless you have Odysseus to drag you away from 'bad influences'.)


A few summers ago I went to the Waterhouse exhibition at the Royal Academy - I made mum book tickets as soon as I heard it was coming because I knew I would never forgive myself if I missed it! Waterhouse, as well as taking inspiration from the poems of my favourite poets such as Keats, also painted mythical scenes, and oh my jeeez, I've never been so awe-struck walking round an exhibition. Sounds silly, but I really was. Painting after painting was a perfect, beautiful representation of Homer's tales, so completely epic yet delicate at the same time. It's like he had captured the magical, intangible quality of myths and folklore, yet had given them all the gravitas, solidity and grandeur that myths inherently possess. So here are some pics, not just by Waterhouse, inspired by greek mythology. I like it when you find two different interpretations of a myth or a poem, just to see how different painters approach the subject.

'Circe' Wright Baker

'Ulysses and the Sirens' Herbert Draper


'The Siren' John William Waterhouse

'Ulysses and the Sirens' John William Waterhouse

'Circe offering the cup to Ulysses' John William Waterhouse
'Circe Invidiosa' John William Waterhouse (This is also my bookmark!)


Doing a little more reading earlier, I was drawn to the section about The Fates. Now as i'm not religious and so don't really want to pray to god or anything regarding transplants-hurrying-the-fuck-up, I decided I could try turning to the Fates. The Fates, or the Moreae, are comprised of Clotho (the spinner), Lachesis (the measurer), and Atropos (the cutter), with Atropos being the most deadly as she is the one who decides when your thread of life is to be chopped! Apparently, not even Zeus is immune from the Fates' devious fingers. But I can't really ask for lovely Atropos to cut someone else's golden thread thanks dear, that's just sick. It's not my life they're contemplating just yet...





Then there's also Tyche and Nemesis - Tyche is the holder and therefore provider of luck and fortune, but who deals out this good fortune in a haphazard manner. I'm a fan of this sense of equality and fairness in receiving good fortune - if only religions were as blind. Nemesis means 'to give what is due', and therefore if the beholder of Tyche's luck does something to render this luck undeserved, Nemesis makes sure that person receives some form of divine retribution or punishment. So here's me hoping Tyche's spinning ball lands on my number soon, and that Nemesis thinks i've been an allright kinda gal and doesn't inflict rejection or an un-shrinking spleen or any nasty transplant complications upon me! After all, what had Prometheus also put inside Pandora's box on the off-chance that it would be opened? Hope. And that's what I got baby!

'Justice & Divine Vengeance Pursuing Crime', by Pierre Paul Prud'hon

I hope this has been interesting, or at least re-ignited your love of Disney's Hercules. I now have all the songs stuck in my head... damn it! ("And then along came ZEUS")





("Zero to hero, just like that!")

Wednesday, 8 August 2012

Amaretto Marshmallow

Endoscopy was completely fine. Camera in, camera out. No banding needed, and the angry inferno left in the wake of the previous one had (from what I can recollect thanks to the sedatives' amnesiac properties) all settled into a much more tranquil and heavenly looking place. If oesophegus' can ever look that pretty. Ha.

What I didn't know is that you can be given a sedative reversal drug, meaning that walking out of Chelsea and Westminster I looked pretty normal, as supposed to a looking like a crack-head somnambulist. Still a little sleepy, and gosh I hate to think what my hair looked like (these days it's shocking at the best of times. Bloody vitamin deficiencies making it go all thin!). Despite this, I felt well up to making the most of this beautiful sunny day! Caramel coffee frapaccino in hand me and mummy hit Kensington High street with the sole intention of finding trousers. I have ONE pair of trousers I wear. The only ones that do up. And they're not that nice to be honest. I'm now the proud owner of two more that shock horror actually do up! Still a little baggy because my legs are stupidly skinny, but it's progress. And they're not black. I brought maroon jeans, and cream jeans with pink flowers on which I absolutely love. And two baggy tops. Blue and maroon (again). Yeah I like maroon. Thank you H&M!

Of course I also treated myself to TWO(!) mascaras and eye liner and two nail polishes (amaretto and marshmallow) and body spray and cotton buds. Yay cotton buds.

My jeans!

My marshmallow nails, with added doodle


And now i'm going to go to bed because I woke up a full 6 hours before what I deem a suitable time to get up. (Anytime after 1. Tough life. ) And i'm shattered!




Next endoscopy appointment: 6 MONTHS FTW!

Tuesday, 7 August 2012

Jaws without the shark

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

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

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

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

The other things I wonder:

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


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

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

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

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

Monday, 30 July 2012

Inferno

Last wednesday I had another endoscopy at Chelsea, just to check again for any varicies (popping out/ leaking blood vessels in the food pipe), and if all the previous ones are still holding and A.O.K. The actual procedure was pretty all right - sedation, dimmed lights, nurses holding your head... it's all quite relaxing in a non-relaxing sort of way.

As I came round afterwards, there was a big sort of muddle, and I ended up chomping down a sandwich as I was told it was fine to eat. It wasn't. Short story short, my food pipe has been agony ever since. I haven't been able to eat or drink without having immense pain afterwards and a sort of reflux/heartburn sensation. Even eating tiny wee morsels of food and sipping drinks it's been hell. My appetite hasn't diminished, so it's proper torture. Friday night I said FUCK IT and got 3 pieces of fried chicken, chicken wings, chippies and a coke for din dins whilst slobbing out in front of the opening ceremony, and gobbled it all up despite the intense after burn. Yes yes, not wise at all. Fears of having lost weight and hunger made me a desperate chick.

Saturday night everything got stuck sort of half way down, and instead of slipping down after a few mins, it just got worse. Big cough to chuck it all up again and out comes not only a lovely chomped up half a sandwich, but loads of blood. Oh fuckity. They always ask me "have you vomited blood?" and woohoo, now I have.

Yesterday I went to A&E which was long and tedious and nothing really happened. All my blood results showed I wasn't actively loosing blood (yay), and blood count was pretty allright (yay), so they just sort of forgot about me - or really, fed me to the lions a.k.a psycho grannies on Acute Assessment ward. Oh joy. And I wasn't allowed ANY FOOD WHATSOEVER.

Today my nurse was a lady who used to be at the Brompton, so we had a good old bitch about it, and about crazy geriatrics, and endoscopies, and clueless pharmacists. She tried her best to get something to happen in the midst of a serious lack of doctors but to no real avail, however eventually I spotted Dr Steel: gastro doc extrordinare and endoscopy pro (it wasn't his fault, I blame agency nurses who don't read notes and me obviously residing in the 3rd circle of hell. See pic.). He was like a breath of fresh air clearing out the dead cobwebs of misinformation and hospital ward mismanagement, telling me straight away what was the problem, why it happened, and what I should do given that I thankfully haven't continued to lose any more blood in serious or grotesque circumstances. "Go home!" said he, "and eat nothing! Only liquids and nothing but from now until no pain is felt!" Food pipe has basically been narrowed considerably given all the banding was done in the same place, and the protruding tied-off dead varicies haven't fallen off yet, so it's even more narrow. Everything I swallow either gets stuck or has to push past these tender varicies, and because I had been eating it's made everything bleed and irritated. I imagine my oesophagus is a bit like Dante's hell. Gets worse as you go down...! (Rejection of sin? Rejection of food more like.)

Looks like a food pipe, right?


Now I have all my meds in liquid form (can't bloody wait to taste those monstrosities, can you imagine!? Liquid cipro?! EW) and a fridge full of Mars Refuel milkshakes and Oasis. I've given my current KFC, pizza, and steak&chips cravings a raincheck (without much luck to be fair), and instead will experience the extreme dieting lifestyle. Extreme dieting, high calorie style. Of course.

I was sort of hoping they might do another endo, and then I could miss my clinic at the Brompton tomorrow. No such luck. I just don't think i'm that lucky.



Update as of 12am: I'm never attempting to have liquid medicine EVER AGAIN. *shudder*


Update as of 31 July: Went to clinic, had a lucky escape with a surprisingly good lung function (76% FVC) despite having a nasty chest, a residual cold, and hardcore week! Really thought they were going to keep me in. I think the new lung function machine is the root of this surprisingly brill blow as my chest was rumble grumble city. At least this gives me a chance to get beneath this temporary cold induced cough and fling it out into the stratosphere without jepordising transplant availability. Lots of high cal supplements to take (YUCK) to make up for inability to eat solids. Short term pain for long term gain. Oh jeez...


Tuesday, 24 July 2012

Poetic musings

With the sun out in full blast, and the temperature reaching nearly 30 degrees, I thought now is a fitting time to share these two poems. The latter is, I suppose, sort of a response to the former. Coleridge's is my dilemma at the moment, a body as a prison. A big fat liver and spleen keeping me hostage. I want to go do stuff in this lovely summer weather, but feel a bit tied down, just like Coleridge with his poor injured ankle while his mates gallivant off without him. He surmounts his entrapment with the imagination - that Romantic powerful imagination that allows an escape from all earthly woes. Yeats on the other hand, seeks an immortality to match that of the soul, and finds this in art. Both recognise the body as a weak link - we are more than just a body, a weak body at times, a body that doesn't even come close to realising all our desires, wishes. Our soul, the essence of US is made for better, stronger, more powerful vessels - why is it that our bodies should fail and falter whilst the soul is immortal? As Yeats so beautifully puts, we are fastened to a dying animal. I don't really believe much in this immortal soul, but I suppose it's all just a bit of poetic license to say this: why does our bodies put a time limit on us? I don't believe a soul is a separate entity within us, but I do believe that it isn't fair that disease in any form should hinder our lives - hinder what our minds want to achieve. Anyway, read these poems, see what you think. They sound beautiful too, and that's a big part of why poetry is, well, just luvely. (Soz they're long.)

This Lime-tree Bower My Prison, S T Coleridge.

Well, they are gone, and here must I remain,
This lime-tree bower my prison! I have lost
Beauties and feelings, such as would have been
Most sweet to my remembrance even when age
Had dimm'd mine eyes to blindness! They, meanwhile,
Friends, whom I never more may meet again,
On springy heath, along the hill-top edge,
Wander in gladness, and wind down, perchance,
To that still roaring dell, of which I told;
The roaring dell, o'erwooded, narrow, deep,
And only speckled by the mid-day sun;
Where its slim trunk the ash from rock to rock
Flings arching like a bridge;—that branchless ash,
Unsunn'd and damp, whose few poor yellow leaves
Ne'er tremble in the gale, yet tremble still,
Fann'd by the water-fall! and there my friends
Behold the dark green file of long lank weeds,
That all at once (a most fantastic sight!)
Still nod and drip beneath the dripping edge
Of the blue clay-stone.

                        Now, my friends emerge
Beneath the wide wide Heaven—and view again
The many-steepled tract magnificent
Of hilly fields and meadows, and the sea,
With some fair bark, perhaps, whose sails light up
The slip of smooth clear blue betwixt two Isles
Of purple shadow! Yes! they wander on
In gladness all; but thou, methinks, most glad,
My gentle-hearted Charles! for thou hast pined
And hunger'd after Nature, many a year,
In the great City pent, winning thy way
With sad yet patient soul, through evil and pain
And strange calamity! Ah! slowly sink
Behind the western ridge, thou glorious Sun!
Shine in the slant beams of the sinking orb,
Ye purple heath-flowers! richlier burn, ye clouds!
Live in the yellow light, ye distant groves!
And kindle, thou blue Ocean! So my friend
Struck with deep joy may stand, as I have stood,
Silent with swimming sense; yea, gazing round
On the wide landscape, gaze till all doth seem
Less gross than bodily; and of such hues
As veil the Almighty Spirit, when yet he makes
Spirits perceive his presence.

                        A delight
Comes sudden on my heart, and I am glad
As I myself were there! Nor in this bower,
This little lime-tree bower, have I not mark'd
Much that has sooth'd me. Pale beneath the blaze
Hung the transparent foliage; and I watch'd
Some broad and sunny leaf, and lov'd to see
The shadow of the leaf and stem above
Dappling its sunshine! And that walnut-tree
Was richly ting'd, and a deep radiance lay
Full on the ancient ivy, which usurps
Those fronting elms, and now, with blackest mass
Makes their dark branches gleam a lighter hue
Through the late twilight: and though now the bat
Wheels silent by, and not a swallow twitters,
Yet still the solitary humble-bee
Sings in the bean-flower! Henceforth I shall know
That Nature ne'er deserts the wise and pure;
No plot so narrow, be but Nature there,
No waste so vacant, but may well employ
Each faculty of sense, and keep the heart
Awake to Love and Beauty! and sometimes
'Tis well to be bereft of promis'd good,
That we may lift the soul, and contemplate
With lively joy the joys we cannot share.
My gentle-hearted Charles! when the last rook
Beat its straight path along the dusky air
Homewards, I blest it! deeming its black wing
(Now a dim speck, now vanishing in light)
Had cross'd the mighty Orb's dilated glory,
While thou stood'st gazing; or, when all was still,
Flew creeking o'er thy head, and had a charm
For thee, my gentle-hearted Charles, to whom
No sound is dissonant which tells of Life. 


Sailing to Byzantium, W B Yeats

THAT is no country for old men. The young
In one another's arms, birds in the trees
- Those dying generations - at their song,
The salmon-falls, the mackerel-crowded seas,
Fish, flesh, or fowl, commend all summer long
Whatever is begotten, born, and dies.
Caught in that sensual music all neglect
Monuments of unageing intellect.

An aged man is but a paltry thing,
A tattered coat upon a stick, unless
Soul clap its hands and sing, and louder sing
For every tatter in its mortal dress,
Nor is there singing school but studying
Monuments of its own magnificence;
And therefore I have sailed the seas and come
To the holy city of Byzantium.

O sages standing in God's holy fire
As in the gold mosaic of a wall,
Come from the holy fire, perne in a gyre,
And be the singing-masters of my soul.
Consume my heart away; sick with desire
And fastened to a dying animal
It knows not what it is; and gather me
Into the artifice of eternity.

Once out of nature I shall never take
My bodily form from any natural thing,
But such a form as Grecian goldsmiths make
Of hammered gold and gold enamelling
To keep a drowsy Emperor awake;
Or set upon a golden bough to sing
To lords and ladies of Byzantium
Of what is past, or passing, or to come.

Sunday, 22 July 2012

U-tops and Dys-tops

I love Dystopias. I love Utopias. I did a course at uni about utopian and dystopian literature, and i've been obsessed ever since. I think it was the only course I actually read every single book on the reading list, plus more. I think what fascinated me the most was how the line between utopia and dystopia is not so clear cut, and how one can so easily merge into the other. It raises philosophical and moral debates that sometimes, you just can't answer. Happiness at the price of freedom anyone?

This is my list of my favs. Read them!

The Republic, Plato. OK, was made to read this one at uni. And I know what you're thinking. Plato? WTF? But this is the bedrock of all Utopian Lit. Plato has created his 'perfect' society. But is eugenics, sterilization, heirarchys and an intellectual elite really a Utopia...?

Gulliver's Travels, Swift. As Gulliver encounters all these weird and wonderous different worlds, each questions our own society and our own ideals, and actually whether our pursuit of perfection comes at a price. A master of critique and satire. Now let's extract sunbeams from cucumbers! Loved this book ever since that TV version in the 90's.

Erewhon, Samuel Butler. An anagram of 'nowhere', this Victorian satire presents a backwards place where for eg. criminals are treated as ill and the ill are treated as criminals. The most amazing part of the book is the last section, 'Book of the Machines' which is a scarrily accurate pre-curser to A.I - all machines have been destroyed as they thought they would develop a consciousness and take over...! You start to believe it. Now relevant more than ever. So glad my brother got this for me from the school library clearout. Good brother.

The Time Machine, H. G. Wells.  Set in the future in a world full of perfectly beautiful 'people' (the Eloi), but hiding a sinister underbelly, literally. 

1984, Orwell. BIG BRO IS WATCHING YOU.

Brave New World, Huxley. Artificial, drug induced happiness at the price of personal freedom? Very similar to Plato's Republic (yeah I wrote one of my dissertations comparing these two) - but one classed as a utopia and one as a dystopia. Which side are you on?

News From Nowhere, William Morris. Written in 1890 and set in London around NOW (!), this is Morris' ideal socialist utopia where London is a big happy rural place, no money, just trading, and the houses of Parliament are a place to store horse manure (lols). Would this ever work, or is it just a rich arty farty man's dream? Would you want it to work?!
 
Metropolis, Thea Von Harbou. A seemingly beautiful urban city full of the elite, yet powered by down-trodden workers. Echoes of The Time Machine. What is the price of creating a Utopia? Lots of Hitler overtones. The 1920's film by Fritz Lang is fantastic, with Von Harbou, his wife (aw bless), writing the screenplay. 

Herland, Charlotte Perkins Gilman. Women only world. No men! :-O So no war, no dominance, no conflict, no angst, and lots of artificial reproduction. A feminist paradise. But, of course, dark and questionable undertones.

The Trial/ The Castle, Kafka. Anything by Kafka is disturbingly dystopic. These two novels are perfect examples of the consequences of extreme bureaucracy, and one man's plight against the system. A nonsensical system that is.

WE, Yevgeny Zamyatin. This book inspired Orwell and Huxley to write their dystopias. The Daddy of the modern Dystopia. Love how everyone lives in completely glass flats, so everybody can see everything. You get dedicated 'sexy time' where you're allowed to close the blinds hehe. *Awkward much*


I really want to read:

The Drowned World, J G Ballard. Another novel set in London, this time in a Global-Warming heated up world. London is a tropical swamp, no polar ice caps, no-one lives around the equator. The Sun is close to earth in a sci-fi take. I think it's not so much as a utopian or dystopian social critique, but is definitely a dystopia!

The Island, Huxley. Huxley's take on a Utopia this time. Wonder if it'll stay a utopia... doubt it.

The Sleeper Awakes, H. G Wells. A man wakes up in the future, just like Morris' News From Nowhere.

Fatherland, Robert Harris. If Hitler had won the war. Hitler obviously was wanting to create a utopia by eliminating all what he deemed 'unsavory' within society. I imagine this finalised vision, and if you imagine it in real life, would be a perfect example of an extremely dystopian 'utopia'. When you think of trying to create a utopia in real life as opposed to fiction, it really is quite a terrifying concept. Paradise at a high price - a price that any sane man or women would never pay. I just don't think creating a complete utopia is ever possible. You have to destroy and eliminate too much, and there is absolutely nothing perfect about that.



Tell me of any sort of utopian or dystopian books you've read and would recommend! Any books that are set in a world that might seem perfect or really really awful. And, if at any point you thought 'actually, this bad world ain't too bad' or 'this ain't perfect you dumb ass!'

I read normal books too. I've read Twilight.