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Showing posts from 2012

All I want for Christmas...

It has been such a long time since I last posted that I had to check the blog to find out when it was. A lot has happened in that period, all of it ripe for blogging, yet I have not quite managed to write anything times it has been enough just to live it without having to reflect upon it, and oh how my therapist loves it when I do that. I will save you from the endless and exquisitely dull back-and-forth that has characterised my Dad's work-up for transplant so far, but currently the situation is thus: he is healthy enough to proceed with further tests to determine whether he can donate, but at this stage it remains unclear whether he will be able to donate to me. A second, and potentially more beneficial option, advocated by my Consultant, is to enter into the Paired Scheme: Dad would donate to a stranger in lieu of another stranger donating to me. Upside? I would get a better match than I might do from Dad, and it would still be a highly prized "live" donati…

If I was in World War II they'd call me Spitfire

I went for a run this evening. Granted, this in itself is not extraordinary; three and half miles, which for those of you whom completing a triathalon is a Saturday well spent, it is not a remarkable achievement, but I should point out that it was raining. Three-fifths of the way round I was flagging, but two things helped power me through: the first was The Prodigy, and the second was my burgeoning understanding of just how fortunate I was to be able to go out for a run at all. The use of our legs, and their innate ability to move at speed is something most us take for granted, and there is nothing inherently wrong in doing so: by and large we know of no other reality than one in which Two Legs are Good, and to spend time giving thanks for generic anatomical processes is, frankly, time that could be better spent. But occasionally it does no harm to take stock and this is precisely what I tried to do as I puffed my way around the the streets of Islington.

I once watched a documentar…

Better the devil you know

Great excitement at the hospital. After much anticipation, as of today we finally moved into the heralded new unit, down the road from the old one. It is much larger than Bostock, and is light years ahead in terms of modernisation; it is clean, for a start. Yet I am sceptical. I feel just as my dearly departed Grandma Nina did when my Pop-Pop died and she was left with no option but to leave her home and move 300 miles from Wales to Kent, into a dinky little house ten minutes away from my Dad. I am the renal equivalent of a crotchety, eighty-four year old woman who knows what she likes and likes what she knows: Bostock might have been old and dingy, but it was familiar and I had just about made my peace with spending so much of my time there. Just.

I was lured to the new premises on the promise of a self-care unit where I could come and go as I please and get on with performing my treatment myself in quiet and tolerable surroundings. On my way to "Olympic Room", where I am …

Dialysis cramps my style

Cramp is an occupational hazard for dialysis patients, just as it is for Olympic athletes - and clearly we have plenty more in common besides. I know not the scientific ins and outs of the origin of cramp -  Google it - but I would imagine having a large amount of fluid sucked out of your body within the space of a few hours is a reliable trigger, and during dialysis it is a symptom that you are somehow removing too much, despite having calculated the appropriate amount and programmed it into the machine before starting. I have had cramp during dialysis before, usually in my toes as I wriggle them around in an effective pain subversion technique that has stuck from childhood. I now do it automatically whenever there is a needle three feet from my person.

Until Wednesday, this minor ailment had never been anything a gentle foot rub couldn't relieve, but during my mid-week session this week I had a cramping experience the likes of which I am not likely to repress any time soon. T…

"A boo is louder than a cheer" (Lance Armstrong)

Over the summer I had an extensive and cathartic clear out of my bedroom. In addition to the bags of total and inexplicable shit that went straight into the bin, I filled two of those large, blue Ikea bags with clothes and lugged them over to my nearest Marie Curie charity shop. I walk past this shop often and in the weeks following my donation I took the time to carefully study the window display, certain that I would see my wares on the mannequins, said wares being exponentially cooler than the offerings of the Islington Blue Rinse Brigade. I stopped every time I went to the gym, peered over from across the road when I went to Tesco and had a gander on my way to my therapist's - but nothing. The mannequins continue to be dressed in the two-tone taffeta and linen trousers that epitomise charity shop couture. My trendy cast-offs are nowhere to be seen and when the Islington branch of Marie Curie Cancer Care is repulsed by your sartorial choices, you start to ask yourself some que…

I would do anything for love...but I won't do that

It didn't work out with the Irish Guy. He turned out to be a bit crazy-bananas. The experience has confirmed that I don't want a boyfriend, but almost everyone under thirty that I know is either happily ensconced in a long-term relationship, or is dating and about to become ensconced in a long-term, happy relationship and if I don't get in on the act I am destined to spend Saturday nights alone until I die or I fashion a life partner from a mop and a pumpkin and call him Christophe - whichever comes first. I like doing my own thing and I value my free time; after work, hospital, the Masters, the Book and some occasional, watered-down socialising, I don't seem to have a lot of free time left. That which I do have I would rather spend on my sofa watching The West Wing with Bear and some custard cream than in a pretentious wine bar straining to hear some guy, who I know won't ring tomorrow, despite what he says, bloviate about the merits of golf/the NME/ his ex-girlf…

Darkness is the night

It is Saturday; it is almost half past one, pm, and I am still in bed. This is unusual for me; I should have cleaned the kitchen and gone to Pilates by now, but I have spent the last hour reading The Guardian online, cuddled up with Bear. I have not taken to my bed amidst a wave of Victorian hysteria: I have just finished a week of hilariously entitled "twilight" dialysis sessions.

I do not like to shake up my routine - I am quite the curmudgeon in this regard. But this week I was required to attend a Group Relations Conference in advance of the start of year two of my Masters and it ran from 9am - 6pm as of Monday, leaving no time for afternoon dialysis and only just enough head space to have a crack at the Evening Standard crossword each night.

In order to make the conference I opted to do a week of twilight dialysis sessions rather than die. The term "twilight", when you exorcise the ghastly tweenie Vampire thing, suggests soft, romantic dusk light, a gentle cl…

A touch of schmaltz, I'm afraid...

I have gone back to work which means summer is officially over, although you probably already know that if you have been outside recently or seen the mince pies in Sainsbury's. But hell, what a summer it has been. More has happened in the last six weeks than in the last six months and my associated emotions have been more up and down than Jordan's knickers.

It started horrifically, with the news about my chances of getting a kidney from The List - this I received on the very first day of my summer holiday. Darkness followed. Then, from out of the gloom, emerged the Olympic flame and slowly, slowly, I found my way back to the light. My God, the Olympics were amazing; I loved every track-burning, high-jumping, triple-piking moment and it proved my salvation. I was overwhelmed by pride in our athletes, as well as the sensational atmosphere in London, but nothing takes the mind off one's dismal transplant prospects quite like three solid hours of handball.

The sun came out. …

The Dating Dilemma

A good friend of mine, let's call her Bertha, has recently signed up to a dating website. Bertha is one of the prettiest, funniest, smartest, kindest, most interesting people I know, so it is no surprise that she is generating a lot of interest from equally smart, funny and interesting men. Since The Chef and I broke up, I have merely kissed a grand total of one other man, and that was so long ago that I fear were the situation to arise again I'll have forgotten what to do and stick my tongue in his ear.

With all that has been going on recently, my love life has been the absolute last thing on my mind; I have had neither the energy nor inclination to pursue it. But now that things are a bit more settled and I am feeling happier, I have been thinking about Bertha and all the exciting dates she is going on and wondered whether I might not get in on some of that action too.

But, no, hang on...its that pesky kidney failure again; it is my experience that when you go on a blind da…

A hole in one go

Sometimes the biggest changes are bought about by the smallest endeavours. Last Friday I was given the opportunity to have a go at doing my needles. In the past, I would have responded with a hollow laugh and a sense of overwhelming anxiety that was only placated by my belief that a transplant would come soon and I could forget about dialysis completely, needles and all. But now, with the hope of getting a kidney all but extinguished, my only recourse is to learn how to put my needles in as a first step on the road doing my own dialysis at home.

Admittedly, it is scary how quickly I have had to radically change my expectations of life, but home dialysis now seems like the most promising route to happiness…so when my nurse, let’s call her Doris, asked if I would like to learn to do my needles…Reader, I said yes.

And I only fucking went and did it! Well, almost…for the first, lower needle I rested my hand upon Doris’s as she pushed it through the skin, but for someone who has spent al…

Going for gold

I am ill. I have been overcome. Yeah, kidney failure, whatever...I'm not talking about that. I have Olympic fever and I fear it might be terminal.

I cried when we won the bid seven years ago and I have been looking forward to London 2012 ever since. An evening spent at the O2 - sorry, North Greenwich Arena - last Saturday has enabled me to say I Was There, watching men do un-natural things on gymnastic equipment, and this week I have been mostly watching rowing, swimming and triathalon-ing on my sofa instead of re-writing my book. I have been inspired by the story of Helen Glover, the gold-medal winning rower who only stepped into a boat 4 years ago. By my calculations, if I were to start training now, I would be on course for topping the podium in Rio 2016.

I just need to decide which discipline to take up. My height - or rather, lack of it - rules me out of rowing (plus don't fancy the early mornings) and swimming, but I don't want broad shoulders either. Shooting and…

Question time

The last week fortnight has been replete with questions: will I ever get a transplant? Will it work? Does being “top of the list” actually mean anything? How am I going to survive the coming months? How am I going to survive the coming days? The coming hours? Will I feel hopeful or happy again? Will any man ever want to be with me? Where did I put my keys? Is Tom Daley gay? Answers have not been forthcoming, but that is not unusual in the course of a disease that is characterised by its uncertainty and vagaries. No time frames are given, no solutions, just a gaping chasm of time and the gentle shrugging of shoulders. This whole illness is one big question.

Over the last five years, the goal posts have shifted constantly and each time I have dealt with that by clinging onto to the notion that one day, someday, I shall have a transplant. There is no guarantee it will be successful but I find it is best not to dwell; instead, you focus on the hope the transplant offers. It is the hope, …

Up and Atom

After Monday's slightly alarming post I am pleased to report I no longer feel like jacking it all in and expiring quietly. The sun is shining and the Olympics are coming, don't you know; plus Fiona is back for a visit from her tax haven and I have bought new cushions for our sofa. Life goes on, even if it is extraordinarily banal (I didn't want to boast, but I also purchased a small coffee table).

In recent weeks, the thought of an imminent transplant has sustained me; now it is just a question of finding something else that will do the job. It might just have to be the little things from now on.

I pray that they are damn lies, these statistics

I found out something today. My Dad had asked me whether I could seek out some more information about the transplantation process - the hospital has told us next to nothing, which is not unusual, but certainly frustrating. My Consultant duly arrived this afternoon before I was attached to the machine, and told me this: for a couple of reasons, the antibodies present in my blood mean that I am an incompatible match for 90% of the kidneys that become available through the national donor list.

"So that means I only have a 10% chance of getting a kidney?" I asked, waiting for him to reply that of course that was NOT what he meant, I had misheard, my C in GCSE maths was a lucky get. But he said, "Yes, 10%."

"That's a pretty small chance," I said. He had come to me with no other information whatsoever, and he left after I told him there was not really much more to say.

My first thought was that I was done. I have had enough. I have tried with every fibre o…

Guilty Pleasures

I don’t know if you know, but it is actually summertime. Yesterday, one of the children at school questioned me for a solid three minutes about the validity of this claim, and grew confused when I confirmed that it is, in fact, summer. “It isn’t sunny,” he said, “so how can it be?” I assured him, but he was having none of it. Children have literally stopped believing in summer; it is now a seasonal fairytale.

So what with the rain, and the double dip recession, and the imminent arrival in London of 70,000 tourists wearing bum bags and befuddled expressions, there doesn’t seem a whole lot about which to be cheerful. The French are trying their best to alleviate our gloom by offering free trips – albeit to France – for every gold medal the British Olympic team win, but something about this feels very smug, very….well, French. I firmly believe that relief can be found closer to home: now is the time to let our guilty pleasures run amok.

The joy I take in my own G.Ps is immense, all the …

Sexual healing

There is a nurse at the hospital who is quite fit. This is highly anomalous and yet not that difficult seeing as his only competition comes from small, middle aged Phillipino women. He is quite swarthy, and possibly French; not my usual type, but, again, in comparison...

In other circumstances, I might even fancy him a bit - and by other circumstances, I don't mean if I had met him in a club rather than on my dialysis unit, although the latter isn't exactly conducive to romance. By other circumstances, I mean if I had any libido left to speak of. I think I might have broken. Read any pamphlet, browse any website, and all information proffered confirms that Mojo Erosion (yes, that's the medical term) is a common fall out from kidney failure, though it is most frequently experienced in tandem with depression, and I may be stressed and tired and borderline anorexic but I would not describe myself as 'depressed". 90% of the time, anyway. But what with one thing and an…

Ice, ice, save me

Maisy and I decided to defrost the freezer. We should have done it during the electricity holiday we took last week in which we went back to Victorian times. A cable had exploded below the pavement outside our front door, maybe because it was old but probably because it was installed during the tenancy of a Labour government, and by day two we were compelled to go to the pub to watch the football because the lack of hot water and Facebook meant one of us was about to eat the other. We felt guilty for moaning, because lots of African children seem to get by quite fine without electricity, but with it gone we realised we had become quite attached to power. We needed it to keep our processed meats and diet yoghurts cold, for instance, but the temperature of our fridge matched the arbitrarily hot weather outside and we were forced to rely on a picnic from M&S. However, it gifted us an opportunity to defrost the freezer - a job on the house to-do list (also on there: save up for a hoov…

Food for thought

Social media is responsible for a lot of good in the world: it has facilitated political change, bulldozed ludicrous celebrity injunctions and gifted us Caitlin Moran. But reliable it is not, for that which isn't posted, blogged or uploaded is often an awful lot more insightful than what is. When opinions are limited to 140 characters and images are notable by what has been photoshopped out, one is inclined to wonder about the truth. Self-editing is a modern pastime, and lately I have been guilty as anyone.

I never intended this blog to be a definitive account of life on dialysis - the experience is so subjective that such a thing could never exist. But I did mean it to be honest and open, or at the very least, cogent and spelt write (little bit of literacy humour for you there). Of course, there are reams of my thoughts and experiences that have not made it to the page: too boring, too repetitive, too painful or too self-pitying. But whatever is going on with my eating at the mo…

God knows...God knows I want to Bake free

It turns out that hopelessly pining away for an operation that may or may not come or work is less fun than it sounds, which is an interesting development because a few weeks ago it sounded totally rad. But hey ho, on we go in the shadow of the Transplant That Never Was, and I have decided it is time to get myself a Thing. Henceforth, my Thing is going to be what I Do, because what with the pining and the self-pity shelved I’m going to have some free time on my hands. To Do my Thing. Which, after a careful elimination process, I have decided is going to be Baking.

Baking is the lonely girl’s fetish. It is an activity that requires no additional human support thus making it ideal for me because all the additional humans in my life actually have social lives that involve leaving the house. Baking has the extra benefit of producing (theoretically) edible treats which you can trade with aforementioned others in return for their friendship. Everyone gets a brownie, everybody wins.

My Baki…

Is the end nigh?

Tuesday 19th June
I barely know where to begin.

After almost three and a half years on The List, after almost four and a half on dialysis, my phone rang. I had lived out this moment in my head countless times, but in the early hours of last Friday morning I finally received a call from one of the surgeons at Guy's: "We potentially have a kidney for you," said Georgius in his jauntily accented English (I would take a punt on Greek). You could tell from the way he spoke that he was smiling. "Ohmygodohmygodohmygod," came my eloquent reply. After we discussed some semantics, I hung up and flew down the hallway to scare the shit out of Maisy by bursting into her room and announcing the news. I'm glad I did though, because it was she who booked a taxi, level headed to the last, whilst I flapped around in my bedroom throwing random items into a bag and haphazardly applying Laura Mercier eyebrow pencil. Then I rang my family, waking them each up in turn: first, my …

Money money money

Another day, another dialysis session and yet another sterling BBC3 documentary on iPlayer. No-one was eating junk food or recounting their SAS days, admittedly, but it was incredibly thought-provoking nonetheless and it left me feeling reflective. And pretty terrified.

The program was about young people who are "secretly" homelessness: unable to live at home for whatever reason, they are sleeping on friends' sofas or in hostels, only one perilous step away from being on the streets. No permanent address = no job; no job = no income, and no income means no money to pay rent for that pivotal proof of residency, so it is a vicious cycle.

My terror did not devolve from the thought that it could be me. The reality is I am unlikely ever to find myself in that situation. I have good relations with all my family, and I know they would put me up were I in need of a bed. I am well educated and have experience in the work place, and whilst the job market is volatile, I work in a …
Dear Future Rosy

Please remember not to blog when you are tired and struggling and sad. It will only result in draft after draft of profoundly self-pitying and ultimately humiliating text. Things are not as bad as they seem, or they are, and you're fucked. Either way, there is not a lot you can do about it.

Also this:

Rage, rage against the dying of the light.


Written in the stars

Today is the 20th, and you know what that means: yep, my transplant will happen this week! At some point! Maybe!

I should start making plans. I need to pack a bag, as though I were an expectant mother, with some pyjamas, a toothbrush, my hair straightners, a change of outfit for Bear and the Tramadol I still have kicking around...all the essentials for my stay in hospital. I'll need some cash, too, for the taxi over there and all the M&S sandwiches.

Next, I shall need to tell all the important people in my life what is happening. In my family we favour a complex, La Resistance-type system of information sharing, so as long as I mention it in passing in a cryptic text to my cousin everyone is bound to find out sooner or later. I shall also need to inform my tutor on my Masters course, the mother of the baby I observe, my therapist, my line manager at work and the features desk at the Metro who will inevitably want to write an article chronicling my epic journey from beautiful-…

A new moon rising?

I would not consider myself religious, or particularly spiritual; I don't believe in fate, or ouja boards, or those charmless mediums for whom somebody at Living keeps commissioning shows. I am, however, a feckless sucker for believing good news. A favourite joke of mine from The Simpsons is teed up by Marge telling Homer that he only hears what he wants to hear... "Thanks, I'd love an omelette right about now," he replies.

Hence, when I read in the Evening Standard horoscopes last week that Mercury's movements (or something) would bring about a life-changing event after the 20th (or sometime thereabouts), I took it as empirical evidence that I am about to get a transplant, and started planning how I will fill the cool box - the one that will live beside my hospital bed and house all the various soft drinks I plan to consume in the wake of the operation (currently topping the list is mandarin lemonade from Selfridges, should you be interested).

Armed with this …
Just spent the last 20 minutes writing a post which I subsequently lost; karma, I suspect, for being filled to the brim with self-pity. Things aren't crazy super wonderful right now, there's been some crying, and Bear has been notably quiet on the issue. Trying to get a grip, really trying...hard though (insert suitably sad-face emoticon).

That time of the month

Death and taxes, proclaimed Benjamin Franklin - the two certainties in life. Almost hard to believe that Franklin didn't also give a nod to the peculiarities of dialysis, but since he made his declaration in a letter to his father dated 1738, when the advent of dialysis was still over 200 years away, you can see his reasoning.

I should like to amend Franklin's famous quote to include: monthly bloods. Since my very first dialysis session over four years ago, the hospital have checked my blood work religiously once a month, every month, whether I have wanted them to or not - and most months, I do not want them to. I understand the necessity of monitoring my potassium levels to make sure I'm not about to have a heart attack, or checking my phosphate to confirm that my bones aren't crumbling to chalk, but because I am frightfully busy (Homeland won't watch itself) I never, ever remember when monthly bloods are due, I don't modify my diet accordingly, and consequent…

Wave hello, say goodbye

There are, I am sure, countless proverbs that reference beginnings and endings. I don't know any, hence the prosaic start to this entry, but the ideas of life and death, of old and new, are inseparable, and were very apt at hospital today.

It was Elsa's last day. Elsa is a very kind, very competent Indian nurse who has been working the dialysis wards at Guy's for the last twelve years. If anyone is going to plunge two gino-needles into the most valuable part of your anatomy, you want it to be someone with twelve years worth of experience to their name. It was Elsa who held my hand and comforted me last year when I had a minor meltdown during a session, tipped over the edge by the ranting, coughing old men and the general icky-ness of the whole dialysis set-up. She looked past my tears and snot and hysterical rambling, and if she didn't she was very discreet about it. She greets me with a warm smile, is attentive during the session and unlike some of the other nurses do…

The pity party

I've done my make up, and my hair...I'm all dressed up, and actually, I do have somewhere to go, somewhere to which I really would liked to have gone. I was invited to a party that I had been looking forward to, thrown by someone I was excited about seeing. But I'm lying on my bed and I can't get off it. Last Saturday, I felt energetic enough to go out for Maisy's birthday and I lasted until - wait for it - almost midnight; consequently, I had high hope for this week's festivities, even if they were scheduled on a dialysis day.

More than the needles and the fluid restriction or the old men who cough up phlegm, sometimes the unpredictability of dialysis is the hardest aspect. One week I might feel fine post-hospital, then the next week...exhaustion. This has resulted in huge amounts of guilt over the years: I manage to make it to X's birthday, only to let Y down a few weeks later. Not only do I feel like a class A loser - sitting on my bed, alone, on a Satur…