Thursday, 27 September 2012


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


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/ 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!