Friday, 29 June 2012


Woke up this morning - I AM COMPLETELY YELLOW!

Skin, eyes... oh my god.

Brompton are going to be in for a shock! I look horriffic!

That's it. Thought i'd share my liver failure.

UPDATE as of 6pm - back from the Brompton, no IVs. However, Dr Gyi just called and apparently I DO have jaundice - the yellowing of the skin and eyes that comes with liver failure. Liver function tests were shocking apparently. Goddammit! Dr Gyi didn't believe me in clinic (because, hello, the lights are yellow?!), but has eaten her words and is sending me over to Acute Assessment Unit at Chelsea + West for some tests etc. 

I. Can't. Believe. My. Weeks. 



Just a quickie post - off to the Brompton tomorrow afternoon (Friday) for what is technically my 'annual review clinic visit' thing, even though I saw the docs when I had my annual review about 6 weeks ago.

I'm hoping they might start me on some osteoperosis drugs - my bone density scan came back pretty shocking - my poor brittle bones! Given they hadn't booked me for a scan in about 4 years i'm quite annoyed - they could have given me something to prevent this!

I also really want to ask about this Tobi inhaler - I nebulise Tobi twice a day alternating with colomycin every month, and even though the half an hour nebuliser lulls me to sleep every time (pretty blissful), it would be fan-bloody-tastic just to have an inhaler! I think there might be a colomycin one too...!

Pretty sure my weight has plummeted during this rocky two weeks, and I even have some sort of feverish thing which has demolished my appetite. It's been horrid - since monday i've been freezing cold, boiling hot, headachey, sleepy, and no appetite. I'm on extra cipro and I very rarely tend to become feverish with an infection so i'm hoping it ISN'T an infection... maybe I caught old granny germs from Chelsea and West. I have all my fingers and toesies crossed that they won't keep me in for IV's because that would suck balls.

But i'll put up a cool, calm and collected fight - Laura style - I'll talk steel if they want me in while maintaining this charming and polite exterior. Bat some eyelashes too. Maybe? At least i'll make them wait until my 3 weeks of cipro is up - buy me some time while I frantically beat all the gunk outta me and spend every meal time at McDonalds! That should do it.


Tuesday, 26 June 2012

To sleep: perchance to dream...

My sleeps have not been peaceful ones lately. It often takes me hours to fall into a slumber, only to wake every few hours with a cough, a low blood sugar... or to be startled awake by some uncomfortable dream. After tossing and turning, after the night sky I can see through the gap in my blind slowly turns violet to grey to blue, after silly scenarios run through my head, I eventually drift off... only to be woken again by a cough, or a low blood sugar, or the padding about of next doors kids. As these tiresome nights drag out in front of me I hope so much that sleep will just come and engulf me and whisk me away to a silent restful haven. I used to wish to have lovely dreams, but now I just wish for an almost deathly silence where my thoughts are locked away allowing me a blissful, tranquil rest.

I don't normally get this wish. The other night I dreamt I got my call from Addenbrookes, but somehow I worked out I had half an hour to kill footling round the house. After 25 minutes had passed on this little countdown timer I placed in my room, I suddenly realised I hadn't even packed! Then came a frantic 5 minutes trying to work out what to bring, but I was in a mood (that I can only compare to having a low blood sugar) where I couldn't make any decisions, and just ended up following my mum about in some hazy crazy daze. I woke up all worried (because to be honest, I haven't really packed everything...) and it took ages for my heart race to return to normal.
I have a poem that I wrote out about 6 years ago blu tac'd to the wall right beside my pillows. It's called 'To Sleep' and it's by my favourite poet in the whole entire universe - Keats. After nights and nights of reciting this poem I know it off by heart, and even though the felt-tips have long faded away, I still look at the pale outlines of the letters and repeat it; the mantra of my bed-time routine.

O SOFT embalmer of the still midnight!
  Shutting with careful fingers and benign
Our gloom-pleased eyes, embower'd from the light,
  Enshaded in forgetfulness divine;
O soothest Sleep! if so it please thee, close,
  In midst of this thine hymn, my willing eyes,
Or wait the amen, ere thy poppy throws
  Around my bed its lulling charities;
  Then save me, or the passèd day will shine
Upon my pillow, breeding many woes;
Save me from curious conscience, that still lords
  Its strength for darkness, burrowing like a mole;
Turn the key deftly in the oilèd wards,
  And seal the hushèd casket of my soul.

It's this silent sleep that I so crave. I love every line of this poem - Sleep is this embalming figure, completely wrapping you up and protecting you by locking your soul away from wiggling moles of conscience who bury and dig their way into your mind as you sleep, filling you with thoughts and worries. How beautiful does a hushed casket for a soul seem?! I see it as a warm and cosy den filled with humungous marshmallow pillows and fluffy sumptuous duvets and hanging purple gold and maroon drapes, completely cocooned away. Forgetfulness divine!

Of course, sleep never quite seems like this. Maybe once in a while Keats' poetic vision will materialize, but you always take a gamble. If you manage to dodge the nightmares however, a dream filled sleep can of course, be just as wondrous. "To sleep: perchance to dream... ay, there's the rub". "For in that sleep of death what dreams may come?" - take away all the suicide and death, and Hamlet has a point. He of course was pondering whether his mortal anguish will dissolve in death - me, i'm just wondering whether my mortal anguish (if you'd like to call it that) will be left in reality as opposed to my dreams. I'd love to not have to worry about transplant stuff in my sleep as well as in my waking life. You hope your dreams will be an escape from day-to-day life, but in reality, it's not always like that. Boo.

No matter how weird my dreams are, you can always tease out an immense amount of truth from them. Dreams can seem so muddled, random, distorted, odd... but in the early morning post-mortem of these weird visions, they paint such a clear picture of your mind. It fascinates me. There are no lies within dreams it seems. The tangled, if not chaotic sub-conscious thoughts weave themselves into an even more chaotic tapestry, yet through the seemingly tangled strings, you can tug and tighten them until the most detailed and precise picture emerges.  You can pretend to feel certain ways, but my dreams always point out exactly what my mind feels. I always say i'm not very worried about the transplant, but going by the number of unsettling dreams i've had regarding it (there was one where they were going to put rashers of bacon in me...), obviously, I am! I just wish they'd calm down a bit. Leave me in peace. If anything, so I at least I have the strength to deal with it the next day...

...And to get over this wee cough that's creeping up on me. Nasty bugger. I had an amazing nursery tea of gammon, bacon, chips, and topped with a fried egg, so hopefully all that salt and calories and fatty goodness will boost me up, especially after days of feeling pretty crappy. Knock this little infection on it's head before it's slimy mits take hold good and proper. POW.

Saturday, 23 June 2012

Made (again) in Chelsea

First of all, I can't wait for Spenny to be the new Bachelor on Channel 5. Thought it was starting today but my aching heart must wait another 7 days for that car-crash-so-bad-yet-so-unbelievably-watchable series. I bet he's going to be a right nob, but hey, isn't that why we love him?!

Talking of Made in Chelsea, I was re-made in Chelsea this week. After coming home from the last A&E visit of previous post, I was back down to the Fulham road the very next day with all the same symptoms. Another endoscopy, and they found a tummy full to the brim of blood and 5 bleeding varicies as the culprits. They were banded with elastic bands to stop any more bleeding by the lovely Dr Steel, who later said to me "I'm never giving you that much valium ever again." Dammit. Bloody worked though, don't remember a single thing unlike the countless other times of retching wretched hell.

They then continued to ply me with drugs to stop this that and the other - antacids, fluids, beta-blockers... anything to reduce the pressure in my portal vein. Beta blockers are never given to chest patients because they cancel out all the broncho dilators (which are beta-antagonists - god you get so geeky living with this), which I bloody need! My chest was tight as hell, and I swear it took them 3 days to order a new blue puffer for me. Wankers. I was also given IV cipro. I am never having that ever again! Cipro in tablet form are known for their crippling tummy aches, but IV's are a whole other ball game!! Never have it! Those of you who have - you know. Think running to the loo. Fast. Eventually I refused the cipro, to junior doctors' horror. I never refuse treatment because I know in the long run it'll do you good, but I did. Took tablets instead. (compromise!) I wanted to refuse everything else, because I was in one of those jaded, discontented, pissed-off moods, but I knew I needed the three days of the reducing the pressure meds if I wanted this whole trauma to stop. They also made me really queesy, and the anti-nausea drugs made me feel EVEN MORE nauseous! I don't get that at all.

After the first day my haemoglobin was hovering around 6 (should be 10). Just before they knew this they sent me down to have a liver ultrasound, and I passed out while waiting for the porter to take me back up again. 1 day and 4 units of blood later I had regained some colour in my cheeks, and was feeling much perkier. The 'hovering mass of freckles' Laura finally had a background on which they could be placed. Not so Twilight-chic, which is always a good thing. I was really quite worried though because since Sunday night I had had hardly eaten or drank anything  - I think because I was feeling so sick on the meds and, well, i'm not really sure. A tummy full of blood maybe? After the banding I wasn't allowed to eat for almost a day, and my food pipe remained unbelievably tender for quite a while... but even today i'm struggling. I managed some thai coconut soup and a bit of sticky rice from my fav Thai place, but it startles me how my appetite has diminished. I really hope it bounces back super quick, otherwise i'm in big trouble with Addenbrookes, and the Brompton of course.

Addenbrookes were aware of all that was going on - Chelsea and West phoned them constantly regarding what was going on - do you think they'll bump me up the list if they knew my liver is failing like this?! To be honest i'm not sure how long it can hold on - this happened quite out of the blue and I suppose it could happen again at any time. My ultrasound wasn't pretty - 20cm spleen, 14cm distended portal vein (yeah wtf?! surely they mean lengthways not width, otherwise that's craaaazy big) and my liver has so many scars and nodules and bumps. Thankfully STILL no fluid - it'll be a sad day if/when I start to get fluid. I think i'll pop.

I hate to think that some people bring this upon themselves. Drinking related liver disease and whatnot. Surely if people knew how traumatic, uncomfortable, painful, tedious, AWFUL this is, they wouldn't do it! But people know what smoking does, yet continue to smoke. They know drugs kill, but continue taking them. Once you've reached a point of pain, it's too late. It's sad. I would never wish this upon anyone. I'm often cynical "yeah they brought it on themselves", but it's hard to stop when you don't actually know what it feels like to hit that wall at the other end. Lucky are those who can jump over it or break through it, but many many don't, do they?

Saying that, I often think about drinking post tx. Haven't decided what i'm going to do, maybe it'll become obvious. Maybe i'll be a changed wee lass and be all "life is amazing I don't drink I just drink naturreeeee and all it's beautyyyy!". (Yeah the Romantics said that but still drank. Just think of Byron. Hardcore leg-end.) But if it works, why not give it something to work for? I'm never going to go bonkers - I think that'll be really bad taste - but i'll treat it to a g&t or two every now and then... everyone loves a g&t every now and then. If you don't... um... hello?

Tuesday, 19 June 2012


Uh so i've had a horrible 36 hours!

The last few days i've been really really sleepy - I thought darn it, iron must be getting low. And then yesterday morning (I say morning, i'm never up in the morning) I went to the loo and everything was BLACK. I ignored it because I couldn't face the thought of it being another oesophegal bleed. Varicies popping. Few hours later, same thing. Wasn't getting better, wasn't lightening up, still completely black.

Went downstairs and sat in the living room, and mum remarked how deathly pale I was. I hate worrying her, but I thought I have to tell her because ruptures ain't good at all. It happens because of the high pressure in my portal vein thanks to my scarred liver - the blood doesn't flow through my liver very easily so there's backed up pressure everywhere. The veins can then rupture anywhere in the GI system - if there's any positives to this, it's that mine do in my oesophegus rather than my intestines. Don't fancy having a camera poked up my butt thank you very much!

So la de dah went to A&E and was gowned up and in a bed in less than 20 minutes! I kid you not! Iron levels were surprisingly normal, I tend to run at about 9 all the time, and that's what they were. Still, they wanted to do an endoscopy which unfortunately could only be done monday morning. A lovely overnight stay in the Acute Assessment Unit awaited.

Then I have no idea what was going on. They started giving me all these random IVs - antibiotics (for some reason), vitamin K, more coagulating/clotting things, antacids... I was filled to the brim with a concoction of drugs like some kid was having a go at making a cocktail and putting everything but the kitchen sink (actually, including the sink) into my poor wee veins. Lo and behold 10 mins later my skin felt like it was on fire! The back of my neck and my face was burning up in waves - but they had given me so many things they had no idea what was causing this reaction. Then I started to go EVEN paler so I just looked like a mass of freckles and thin air. Then I was so sick. Then (yes, there's more!) it felt like I had a bladder infection and needed to pee constantly. Add to this a tummy ache, serious exhaustion, and the fact that I was wearing a frickin hospital gown that kept flying open. NIGHTMARE.
This lasted 24 hours.
And I still hadn't had my endoscopy.   

OH, and I was nil by mouth.

Next afternoon (after the most awful night filled with all of the above plus batty granny's shouting at her invisible friends ("Oh Jim! For the love of GOD, open the door and let the kids in! Let them in, Jim!!" "Jill, come sit with me and tell me about the kids""No! No! I'm not sitting by the window, i'll get wet! Don't make me - I won't do it! NEVER!")), I finally had my endo.

Found a couple of varicies, hadn't even been bleeding. It was then my turn: "Oh for the love of GOD let me go home!!"All that, and still no clue whats going on in there! Docs think there might have been somewhere further down that had been leaking, but since there was no more black toilet stuff (nice), they weren't going to try again. Mystery. At least the bleeding seems to have stopped. But seriously i've never felt so drained in my life. Go in with one thing, come out with a never-ending list of things - I still feel horrific. Blurgh.

I did lol big time when the girl opposite me, who had taken cocaine and E or something and had collapsed and banged her head, told her mum "Oh, I passed out because i'm just so, like, stressed". Fucking Chelsea.  

Friday, 15 June 2012

A working lass

Today I earned some MONEYZ! A family friend is in the process of writing a book, and has hired me to sort through these Victorian stereograph photographs that he wants to incorporate, putting them into catagories. I thought it was going to be really quite dull, but these photographs are amazing. There are basically 2 images of the same scene, and when viewed next to each other through special magnified lenses, the image is three- dimensional. Some photographs lend themselves brilliantly to this - photographs with depth suddenly bounce to life - looking through caves, through arches, winding forest paths - it's incredible! I've got to weed out the blurry/ scrappy/ boring ones.

It felt great doing something different and spending my time productively. And getting paid WOOHOO. I've been lucky in that i've never needed to work - not to fund my way through uni (though I have a 22grand bloody student loan), nor to go out. I know how lucky I am. I also know that my situation isn't the same as most - in regards to how much I have to do in a day, energy wise, treatment wise and all that tedious CF stuff. When I get my new liver + panc however, I can't wait to have a normal job. Not having to worry about hypos creeping up on me without me realising, the size of my stomach (it's hard work ya know, imagine being pregnant but it lasting waaaay longer than 9 months!), lethargy, squished up lungs.... blurgh.

We were chatting for a tiny bit about my transplant, but i've noticed a lot of people don't really know what to say or how to approach the subject. I see it as a hugely positive thing, yet some people are very wary and look pretty shaken when I tell them. Like i'm at the end of my life or something, almost like "you poor thing". Once my positivity and excitment is obvious however, people tend to ease up. He also didn't quite comprehend why I need a liver - "I thought it was your lungs?". Again the confusion and the scale of pity grows. "You poor POOR thing" is what the eyes always convey. But I think there's a bit of respect and admiration there - I hope anyway - as the enormity of what I (and so many other people with CF) go through becomes apparent. I forget how much it is sometimes, but i'm chuffed that I cope with it all! It's nice to remind yourself of it sometimes. Easy to forget. My life seems quite banal and normal to me most of the time! Apart from I don't have a proper job... hmmm...

Not really sure what I want to do with my life though, which bugs the hell out of me. I might want to own a literary themed cocktail bar, or an all-day-breakfast cafe that delivers. I have all the names of my lit-cocktails, and some yummy cocktails. I also love all day breakfast. Breakfast for dinner. Imagine on a sunday morning, lying in bed, and the breakfast of your dreams turns up at your door. Why has no-one done this already?! Maybe I don't want to own this, just use it? Everyday. Stuff myself on blueberry pancakes and Oscar Myers bacon and maple syrup.

 P.S. Tomorrow is the 16th of the time when I have 1/6 chance of getting my call which has a 1/6 not-survival chance... If I get my call tomorrow i'm converting to Numerology. If I don't I won't write about coincidences EVER AGAIN. :)

Thursday, 14 June 2012

Something Fishy

Talking of 1 in 6's... according to this fancy little chart, there is a 1 in 6 chance of me getting the call RIGHT THIS MOMENT.

This is the Poisson Distribution chart, created by a Mr. Poisson (fishy guy). It basically tells you, according to Mr Poisson's theory, the probability of when a random event will happen. You have to know certain values - which I do! I know there is an average waiting time of 4 months for my liver. I also know that I have been waiting for (nearly) 2 months.

Sooo, along the bottom I go to 2. Then from that point I go up until I hit the purple dotted line (4 months). (I KNOW this sounds stupid but apparently it's all true.) Go across and voila! you get to 0.17. Which equals 1/6. Well, 0.166666666666666666.

And that is the probability that this random event will happen right now!

Now with my Freudian Feelings all sensitive (coincidences and whatnot), I can't escape all the 1 in 6 chances! If I was Freud i'd be all "Ach! Eet is true, I vill receive mine Liver rghight this moment! Ach the connectionz argh too strhong!". Of course, Freud didn't get any of his predictions right (he died when he was 83, not 62... no where even close Siggy), so i'm not holding my breath.

(Haang on 83... 62... +2, -1... Just kidding.)

Still, look at how steep the line is now. Which means that with everyday my chances get higher and higher! (The curve goes down after 4 months because the chances are it's already happened. Cool huh.)

Can you tell this is devouring my brain? I swear I can't think of anything else. Deary deary me.

Tuesday, 12 June 2012

A check up

Had a 'waiting for transplant' check up at Addenbrookes today. First thing, it's unbelievably quick to get to Cambridge from where I live, which is always mighty re-assuring! At the beginning of this process I kept having nightmares about getting THE call and not being able to get there soon enough and missing the organ. Shudder.

There is one thing that does worry me however - I was told that if i'm on IVs and I get the call, they won't go ahead. Ah! I knew keeping my lungs well was important, but didn't quite realise it was that serious. I haven't had any IV antibiotics since december, and my chest has been pretty tip-top since then. Just got to hold up for a little longer. Sometimes the Brompton piss me off, because they maintain their stance that they won't overload me on antibiotics "because it might damage my liver." (Insert another raised eyebrow.) This may seem blunt, possibly short-sighted, but I don't care! I'm getting a new one anyway - but I won't if you don't ply me with drugs! I understand where they're coming from ie don't know how long i'll be waiting, but it's just a little frustrating. I don't want to miss my opportunity. I'm a B+, so only 8% of the population is compatible. Take away another 3% due to size. That isn't a lot of matches...

So i'm keeping well clear of the Bromp. And public transport. And anywhere there may be bugs. In fact, tomorrow I start making one of these:

Bubble Boy!

The doc also seem surprised when I told him how excited I was. Apparently no-one has ever said they were excited... Am I just odd? I know how people can be scared, apprehensive... yes of course i'm a bit of those, it's a major thing. But surely people must get excited at the thought of what new and wonderous life is waiting just around the corner! The odds of not surviving is 1 in 6. That's daunting. A game of Russian Roulette. But surely the allure of playing Russian Roulette is the excitment? I'm slightly tentative comparing it to that, because you probably all think i'm a lunatic adrenaline junkie. It is different though, because a gift of a prolonged, vastly improved life is what i'm gambling all for. And for that, it's a risk i'm willing to take.

P.S. I'm hoping they just gave me that statistic to stop me from wanting new organs... 3 organs must mean a lot of work for the poor surgeons. It'll be a long night for them! I'll be fine somewhere far far away in a drug induced cuckoo-gaga-land...

Monday, 11 June 2012

Lucky charms and starlight wishes

My nan died on new years eve last year. She lived in a scarily huge house in the center of Canterbury - stunning to look at yet crumbling on the inside. Ever since I was a kid the house has simultaneously mesmerized and terrified me. The grand staircase, the humungous portraits lining the yellowing walls, the labyrinthine corridors with secret hidden stairways leading to secret hidden rooms. Apparently there's a room without windows or doors somewhere in the middle that no-one has ever been inside. (Yeah wtf?) There used to be a huge dolls house in one of the upstairs bedrooms - when I was little I would creep in, re-arrange the delicate furniture, but after a short while run out spooked by the eerie silence... or maybe a creaking floorboard... or a spider. Wouldn't help coming face to face with this dark and sinister portrait of Napoleon that used to lean on the wall on the way to the bathroom, his eyes following me as I sprinted past, heart racing. Freaky shit. Anyway, the last 5 months my mum and her brothers and sister have been trying to clear the house.  The lady who came to take some things for auction apparently said to my mum "The only other house I could compare this with is Windsor Castle". LOLS. I'm trying to paint the picture of the size of this place, so when I tell you that the whole place, from top to bottom, was filled with a lifetimes collection of antiques, you'll understand the sheer scale of STUFF that was crammed in. The amount of 'antiques' that filled that house is ridiculous. It's a bit like those hoarder people's houses that've been on TV recently. Pretty sure they propped up the walls and that's the only reason it hasn't crumbled down yet. A lifetime of belongings that a lifetime of traveling and luxury has provided. In the process of riffling through the plethora of things, Mum brought back a few little things she found for me. This is one of my favs:

It's a chip from a Monaco casino where my nan and her hubby went on their honeymoon in the 40's. I don't know how much it's for - whether its a huge amount or not, but it's really beautiful. It has a lovely pearl shimmer to it, lined with little gold bits. I've sort of adopted it as a new lucky charm. Lady Luck. I wonder if it brought luck to my nan? Maybe that's why she kept it? A souvenir of an extravagant night on the Cote d'Azur. I want to turn it into a necklace or a bracelet, but of course would rather not poke a hole in it.

I'm not really a 'lucky charm' sort of girl, but since this transplant doo-dah I can't help but hold on to and wish upon little belongings for luck. I also end up creating and looking out for omens, signs and weird coincidences that may point to when i'll get the call. Apparently Freud used to be very superstitious when it came to numerical coincidences - he used to add up, divide, multiply important dates, meaningful numbers to determine when things might happen... including his death. Freud was sure he was going to die when he was 62. (Coincidentally, or not, the last two digits of his phone number). I did get a bit "oooh ahhh"-y when 40 days and 40 nights had passed - I couldn't escape all the Biblical connotations. Also when Prometheus the movie came out. The titan Prometheus stole fire from Zeus to give to mankind so as punishment he had his liver picked out by an Eagle everyday for eternity... Livers. Ooh. You can find patterns and meaning in anything if you're desperate enough!

I'm not religious - never have been. But it's times like these where you realize just why religion can be so important to people. The security it provides is unmeasurable; the comfort and support it can bring to people when they're unsure or worried or crave some feeling of being looked after is priceless. I've found myself wishing upon stars.  

Star light star bright first star I see tonight, I wish I may, I wish I might, Have the wish I wish tonight
It brings some sort of control to the uncontrollable, and that your life is not governed by luck or fate, but instead there is a higher power looking out for your every need. It's almost enviable to have complete faith and belief in something. Life might not seem to scary if you have faith that you're being watched over. I don't want to be religious - I hate what religion has become and what it does to families, to communities, to countries, to the world. My parents are both Northern Irish, and have seen what it can do. Religion as a social structure is not something I want to be apart of. But if from time to time I want to put my fate into another's hands, I choose the stars. It's a bit magical. They're eternal, but their beauty seems so ephemeral - so fleeting, so delicate. The way they glitter, the way you can't see them sometimes, but always know they're there. I know my little rhyme won't change anything, but I like going to sleep thinking maybe, just maybe...

It worked for him goddammit!

Sunday, 10 June 2012

Moonrise Kingdom

Yesterday afternoon I saw Wes Anderson's 'Moonrise Kingdom'. GO SEE IT. It's gorgeous. Everything he does is gorgeous. I think it's the colours. Like when Dorothy steps out of her black and white house into technocolour and realises she ain't in Kansas anymore, Toto. The girl in the film also carries round a kitten in a basket through the wild forests, which is just way too cute. I think i'd like camping if it was like this film - if my cat would be willing to come with me, if I had a portable LP player, and had a proper Khaki Scout boyfriend to set up camp in such glorious places. Oh, and if I was twelve. In reality i'll just let Wes Anderson create my escapism for me, because life is never quite as pretty as his films. It just doesn't really match up, does it? It's like everything has been lovingly wrapped up in aging parchment, tied up with twine, and has a little hand written declaration of love hanging off the bow.

P.S. Why don't people write letters anymore?

But anyway last night was a joke. I think I drifted off to sleep around 3, but was up every few hours coughing and spluttering... too hot so I put the fan on,  then I was too chilly, then my light blew up, then my blood sugars were really high, then it got light, then my blood sugars were too low... I don't think I got very much sleep at all, and now I feel rotten. Thank goodness it's sunday so no-one has any expectations of doing anything productive. Not that I ever do anyway... I've asked dad to bring me back some cheapo fairy lights from Homebase so I can decorate the living room. They maaaayy end up in my room though. A gal can never have enough fairy lights!

Saturday, 9 June 2012


Waiting for a transplant is a lot like being suspended in limbo. The poet Coleridge beautifully wrote that Limbo is "positive negation" - an existent nothingness - it exists yet it is a hollow void, where time stands still and life does not proceed.

   Tis a strange place, this Limbo !--not a Place,
   Yet name it so ;--where Time & weary Space
   Fettered from flight, with night-mair sense of fleeing,
   Strive for their last crepuscular half-being ;--
   Lank Space, and scytheless Time with branny hands
   Barren and soundless as the measuring sands,
   Not mark'd by flit of Shades,--unmeaning they
   As Moonlight on the dial of the day ! ...

There isn't much I can do until I get my call. And not knowing how long you're going to have to wait casts an un-easy and slightly un-settling shadow over the whole thing. It could be NOW, it could be in a month, could be 5, 7 months... a year? How do you plan for that? A proper job is out of the equation, holidays are a no-go. So you wait. Someone pressed pause on my life remote. It IS a strange place Mr Samuel. A strange un-place. Weary, lank, barren and soundless. I imagine this is how a ghost might feel. Occupying a space yet not really there, never aging, simply existing. But of course, unlike a ghost who's immortal time is never ending, at least I know one day this phone will ring, and suddenly time and life and the here and now will burst into motion - someone will have pressed play and Coleridge's soundless barren nothing will be replaced by a deafening "HOLY SHIT!" Never has a silent phone seemed so loud. It is the biggest thing in my life at this moment. At times I forget about this whole weird palaver (transplants are weird. Good, but weird) but when I catch a glimpse of the now pink day-glow monstrosity that is my phone, I think my heart does a little serendipitous jump of joy. I can only equate it to what Christmas eve feels like when you suddenly remember Santa's on his way (eek yay!). The excitement stops both my heart and my breathing for a second, sometimes so strongly to the extent that I hope I won't be needing any of those organs added to my list... just yet. Two is quite enough! (and the bit of gut, don't forget the gut...). In plain english, it's exciting. Coleridge - MY limbo is exciting! Yes quiet and frustrating, but I just know that soon it'll give way to the most important and amazing thing like, EVERRR.

So this silly pink phone never leaves my side. I've turned into one of those chicks who are ALWAYS holding their phones. I know it's far from lame, but it feels really lame. If I ever go clubbing (not likely given my current physique and health) I would be just like those annoying people that are glued to their phones throughout the whole night, twittering or texting or writing a facebook status "omg i'm so drunk i'm having the best time EVER". LIES. Get off your phone then? Anyway, that won't happen. But I just wish my phone would hurry up and ring so I can eventually get back to Oceana.

I'm kidding. Anywhere but Oceana. Even limbo - no, even Hell would be better.

(I could make a pun about going clubbing at Heaven, but i'm just not.)


Friday, 8 June 2012

Nail time

Look what arrived in the post today! Nail polish pens, so I can do some nail arty things. If they're any good, i'll post pics. I've been doing it with fat brushes, so this should make it much easier and much more fun. Can't wait to get frostin'!

UPDATE! I did my thumb.

Blackberry Jam

'Bramble' in a jam jar. 

So the other night I went to The Shop on Chamberlayne road, Kensal Rise. It's literally next door from my friend's flat, so we pop along whenever i'm over. Kensal Rise has recently become the new area du jour - everywhere you look trendy people are strolling in to trendy shops and trendy bars and trendy coffee shops to buy their trendy gluten-free-fat-free-sugar-free-ethical-soya-mocha-choca-wocca-skinny-latte/muffin. Hence, in The Shop, all drinks are served in jam jars. (See, I even wrote 'hence'. That's the pretentiousness rubbing off.) But despite this puke making coolness, the cocktails are TOTES AMAZEBALLS I mean, really yummy. 
The Bramble I think was gin based, not too sweet and finished with a glug of blackberry liqueur which makes the whole thing taste like rolling in a bramble bush with squished blackberrys ending up in your mouth. I normally have the 'Once Loved' which is served in a milk bottle (yeah, I know) and is a tropical DREAM. 
But they're expensive, so hello Tesco.
However, I really should avoid the 'hello tesco's wine section' of the night because my liver is bust and my hangovers now last 2 days. Easier said than done, but I do try. I do I do I do. Don't even drink that much - if I could raise one eyebrow and give my liver a look of 'are you serious', I TOTES would. So, this friday night will be spent watching Big Brother with a bottle of Coke a pack of crispy bacon some home-baked bread I made earlier and a side of insulin. Yum. (That's just the post dinner snack!)

Oh hi! Mr President

This needs no explanation. Enjoy.

I have succumbed

According to this little gadget I have on my google homepage, i've been waiting for a liver and a pancreas (and a little bit of gut - don't forget the gut!) for 49 days. The first 2 weeks flew by, but now it's like time has decided to play a cruel and torturous joke on me and go as slow as it possibly can. This gadget is also telling me it's been 32 days since i've had a McDonalds, which is worrying me. Pretty sure i've never gone that long without a MaccyDs before. At school I used to have McDonalds every day for lunch, even when my whole school was banned (inner city comprehensive. Rowdy bunch). This is one of the perks of having Cystic Fibrosis - you can eat all that good shit and not gain a drop of weight. My mum wrote a letter to the manager, explaining my high calorie dietry needs, and from then on, I was the envy of the whole school. My friends could come with me too - luckily I didn't have to choose between fatty goodness and friends. Though if it came down to it, I just might have chosen lonerville... 

So this waiting game is one of the reasons I have succumbed and started this blog. I spend my days doing nothing. I sleep, watch Home and Away, then Neighbours, then sometimes Law and Order but it gets really hardcore, then sometimes the channel 5 afternoon film. Notoriously always absolute rubbish. But so rubbish, it's really watchable. Just like Will and Kate the Movie. Dotted during this crap fest I eat as much food as I can, and work my way through all the physio and nebs and boring things like that. This lazy lifestyle is actually a pretty good way of making sure I do all my treatments. 

I'm not a fan of going out much these days - my crappy scarred liver and fat spleen have made it so I look pregnant, and have constantly low energy levels. It sucks. I don't go out unless i'm wearing a big baggy jumper, which as the weather is warming up, is making it harder and harder. So I stay home, be good, make sure my chest is tip top to deal with the upcoming transplant, and indulge in guilt-free slobbery. There aren't many times in life where that's acceptable, so i'm making the bloody most out of it. This is also why i'm up at 2 in the morning... I don't need to get up until 1.15, just in time for my Australian soap fest.