Day 1096

I haven’t had a cannula in my hand for almost a year. The last time I had chemotherapy delivered through one was almost four years ago now. Its pinch and push and slow hotcold ache belong in memory, in a box held closed with elastic bands as narrow as dental floss.

In a box held closed with sellotape as narrow as my fingers is a lamp made from rock salt. The label says 9-12 kg, the weight shivering in my blood vessel skin bone gristle little hands. The next day, rising pink like light shone through salt, through eyelids, a slow hotcold ache slithers out of its box. My beehive heart vibrates.

***

In a shower in a bathroom in a three-bedroom terraced house in York I am washing my hair. I pull my fingers through its tangles, and two or three hairs come away on my palms, wrapped in a shampoo shroud. Spiders like this one have been known to hunt bees. I thrust my hands under the stream of water and wash the strands down the drain of an en-suite in a HEPA-filtered room in the Young Oncology Unit in the Christie in Manchester. I try to remember that shedding hairs is normal, but the bees are the prey in this relationship and a glimpse of the spider has got them scared. With face upturned I wait for the water to rinse the panic from my eyelashes.

***

My colleague flashes a rolled-up cigarette between her fingers. She shoots me a grin and jokes that she’s going out to ‘get some cancer’. My laugh comes out dripping pink. I clamp my mouth closed to stop the swarm escaping, and turn away with studied nonchalance. Minutes later, in the quiet of the stockroom, I count breaths, count my fingers, count lamps made from rock salt through closed eyelids, until my magenta pulse has faded to rose then to black. Elastic bands creak under a pressure they were never designed to hold. I retrieve my smile from the floor.

***

Three years, 1096 days ago, doctors tied mine and my sister’s DNAs together with a neat little bow and this second chance at life began. Second chance, like I failed first time, like I have to really make this one count, like these three years I’ve lived are undeserved, an exception to rules I’ve already broken once. A clean slate if it were not for the ghosts of old letters which won't be erased properly, chalk dust on my cuffs. 'Leave us behind,' they whisper, playground bullies with tendrils tugging me backwards. Pinch and push and slow hotcold ache. As if it was going to be that easy. 

They've pulled out each of my ribs and replaced them with pieces of honeycomb. The bees nesting here are vigilant. I do not know when they go to sleep. How can I choose to forget when this fear has made its home not in my mind but in my bones? 

I mark the years because the curved familiarity of the figure three is the only thing solid in this universe of vapour and fluid and dotted lines stretching away into nothing. Even in the cancer world I feel like a foreigner, fumbling for an answer to 'how long have you been off treatment?' because I faded off treatment like a child grows out of her dolls. Three years clean. Less than a year since I last had an infusion of donor blood cells. Two months since my last blood test. Four days since my body last reminded me, with pangs of unprovoked nausea like the compulsions of an addict, that this time is borrowed.

And don't misunderstand me, I am so happy. To be in this three-bedroom terraced house in York, to study a subject I love and am good at, to work a job I enjoy with funny, kind people, to live inside this strange renovated body and reach towards the future with arms of skin and smoke, these things are treasures. Even tinged pink and shivering, I hold these 1096 days to my chest like heirlooms. But make no mistake, the shimmering golden survival you see on the TV adverts and in books and films is a lie. Behind every beautifully seized day are two more spent beating angry swarms of bees back into their nests. I have begun each of these 1096 days rinsing the pink from my eyes, excavating the joy from my buried heart, remembering what it is to live, even when there are no guarantees. I will do the same tomorrow, and tomorrow, and tomorrow, and maybe someday the box in my memory will softly click locked. Until then, I am getting to be quite an accomplished apiarist.

pellet

six ribs from the bottom of my chest
anatomical left
a piece of shrapnel.
tell the stories I know how to tell
and their bones malinger
undigested,
ossifying,
packed tight like a swollen lymph node.
roll up all my metaphors and give it a poke
so it rumbles against my insides.
I am looking for a flaw
on its shuddering roughsmooth surface
to pick at like a scab,
reach through layers of skin and eggshells,
to shriek over its blackboard exterior
with bitten fingernails.
underneath I imagine a new skin sheen
pink and plump and waiting.
or maybe just greyness
and fungal spores
and feathers.

uneasy kleptomaniac

the criminal always returns to the scene of the crime.
months fall from my pockets
and break to bits under my shoes on the doormat.

unbutton my skin,
hang it on a hook behind the silent sliding doors
(which they will lock at eight-thirty)
and wade down the corridor in the hollows of old footprints.

this place has both my DNAs on file.
i sit inside-out and hold my breath.
underneath the blood-pressure cuff my pulse thrums its guilt.
a fresh vial of blood like a confession
and still nobody has blinked at its aqueous thievery.
i have got away with it again.

i refasten my skin.
run my hands over the illicit years
stitched into its lining.
feel its familiar bulky weight.

on the bus home, i roll a loose button between my fingers.

the place the stories forgot

Lives aren't stories. They're just a load of things that happen. The place where act one becomes act two, the climax and denouement, they're all retrospective, superimposed by our minds. We are narrative machines. It's one of the reasons I study literature. You don't realise it until you really stop and think, but storytelling is a big part of what it means to be human. We just can't help it.

I've been interrogating this impulse to narritivise lately. My dissertation is all about narrative in relation to illness, especially cancer, about the kinds of stories people normally tell, the ones people expect to hear, and the ones that slip through the gaps. Some of the theory I've been working with looks at the illness stories that make it big, the types of tales that people like to hear or read or watch, why that is, and what effect it has. The types of illness stories that make it into the public eye trickle into people's consciousnesses, telling them that this, and only this, is what illness is like. If you don't fit the model, then you must be doing it wrong. 

There is so much of this I have fallen prey to. I've sanitised my own writing at times, weeding out the undesirable aspects, or covering them up with enough humour for them to be palatable again. I've shoehorned things into narrative arcs, to give my life a poetry it never had when I lived it. But as I've thought more and more about it, I've tried to stop myself doing this. 

Choosing to tell the nice story is a little bit like lying if I don't acknowledge that there were parts of it where I cursed the universe, or snapped at all the people trying to help me because I was so angry about everything I had lost. I have to acknowledge the hours spent curled into the foetal position trying to forget I have a body, those dark stolen moments in the middle of the night where I wished I would just fucking die rather than live through another day of this. Those days where I wanted to rip my skin off out of sheer impotence and helplessness and terror that I might never get better, trapped inside this malfunctioning body, a vehicle hurtling towards a cliff edge.

Even now, over two years later, I am not better. Yes, I'm in remission, but that doesn't mean everything is okay again. If I was going to be a good little storyteller, I'd tell you that I learned things, that I'm wiser and stronger than I was three years ago, but you know who else is wiser and stronger than they were three years ago? Pretty much everyone. It's a side effect of getting older. To pretend it was illness that made me this way is a stretch that ignores all the other ways illness made me worse. I'm more anxious now than I ever was before. I graduate in June and I don't have a clue what I'm going to do because when everyone else was starting to think about that, I was thinking about how I had managed to stand up for my entire shower, and how my hair is now an INCH long, and how I have to go back to the hospital next week for another bloody test. I was rebuilding. I'm not better, just different. 

I won't ever be better, not in the way the stories want me to be. Maybe you think two years is long enough and I should move on now, but the closure you got when you found out I was in remission is not as tangible on my end. When I was first diagnosed they said they were 'treating to cure' but now, nobody will mention the word 'cure' around me because it's a bit too loaded. A bit too final. Past the point of no return, I don't have the luxury of closure, only a precarious sense of crisis averted. For now. I don't know if that ever goes away but until it does, 'moving on' isn't really an available option. 

Sometimes, living in the place the stories forgot is really, really lonely.

I wonder how many more people have been hurt by the lies we tell each other. How many people, with lives that look just like mine, are forcing themselves to smile through their chemo because nobody told them there's another way to be. People who keep all their ugly emotions bottled up inside their fragile little hearts because there's nowhere they fit in the story. Who are crossing their fingers waiting for life to resume, not knowing that it will never be quite the same shape it was before.

So when I tell you these things, it's not to be a buzzkill. It's because I'm thinking of the nineteen-year-old girl sitting in the same consultation room today, receiving the same diagnosis. She's wondering if she's going to die, staring blankly at the immediate future with no idea what it will hold because nobody will tell her, not really, not without a shiny candy shell. I do it because I don't want her to spend hours crying into her pillow, thinking she's a freak for being as afraid as she is, because nobody behaves like this in the stories she's been told, and not only is she sick but she's also a terrible person for being so bitter about it. I want her to know that her terror is normal. I want her to have permission to feel and experience everything she needs to and know that she isn't alone.

Screw the nice little narrative. I think my way is better. 

the girl in the mirror

I think I finally look like me again.

Not the same me I was before. That me has excruciatingly rectangular glasses and hasn't quite figured out that she can smile with her teeth and probably nobody will notice the gap between them. She has hair that is the same almost-black but it falls in tangles halfway down her back and if you told her to cut it she'd laugh at you. She doesn't care about her appearance because she's never needed to. Maybe she doesn't carry herself particularly elegantly or own a pair of shoes to go with every outfit but that's okay because she knows who she is. Her skin fits her like a glove.

The dermatologist called it alopecia areata but I know differently now. My hair can see the future. It got a glimmer of the cancer diagnosis a year down the line, and decided it wasn't worth sticking around. Humans aren't supposed to shed their skins. Our warm blood gets cold without its protective shell. Mine made me a chameleon, blending into the background just enough to not be noticed. I didn't know how to be visible, didn't know the right expression to pull when eyes lingered at the little bit of skin-coloured netting where my face met my wig. The hairs on the shower floor and between my fingers and clinging to my clothes like a plague all felt like little bits of the person I used to be. Who knew my sense of self could be lost like so many strands of keratin?

A thought I distinctly remember thinking: lighten up, at least you don't have cancer.

There is some anecdotal evidence linking alopecia areata and early stage Hodgkin's lymphoma. My initial oncologist (there have been a lot, it's a special bonus of being a difficult patient) said he thought the lymphoma was advanced enough that it had been lurking up to a year before it was diagnosed. Maybe my hair can't see the future at all, maybe it could just see deeper inside my body than I could, could see the badly formed lymphocytes quietly proliferating months before they made themselves louder. Maybe my shed chameleon skin was trying to tell me it was time to look below the surface. It was trying to give me a way in.

A succession of wigs, like a theatre wardrobe, each one a different character. Even ones which should have been perfect had a synthetic shimmer, like a computer-generated avatar. Hairlines too neat, a drawing by a child coloured with only one brown pencil, a shade slightly too orange. So nearly right that the things that were wrong were magnified to one hundred times their size. Uncanny Valley. Who's that in the mirror? I'm not sure I know her. An Instagram feed cluttered with selfies because maybe I'll recognise the next one. No, I still don't know who that is.

Five months into chemo I took the wigs off. The bald patches had been surreptitiously filling themselves in, while the rest of my head thinned itself out under the influence of the regimented poisoning, leading to a pathetic kind of uniformity. The raggedness evened up with a barely-there pixie cut, but the wispiness didn't matter because I didn't really look like myself at all any more anyway.

A quote I distinctly remember from a coffee date with a childhood friend: You're looking great!

I was wearing jeans which had always been a little bit too small but I'd kept because I liked the colour. I couldn't really sit down in them. Except that now I could. Months of systematic poisoning will make you shed more than just hair. I found edges I didn't know I could have, bones protruding in places where they had always hidden in a cloud of flesh. I was still a normal weight, but this wasn't normal, not for me, someone who was used to being so soft and solid. The large-eyed girl in the mirror looked like she might break into a thousand pieces in a moment. My mum made envious comments about the circumference of my thighs and I scowled because the only alternative was crying. Contract a life-threatening cancer and you too can have this waistline! 

I longed for my old skin, the one that held all my parts together without any effort, the one that was so comfortable I could forget it was there.

Soon it wasn't enough to pick off all my flaking scales, there was further to go. First a tube in my upper arm, then one just below my right shoulder, burrowing into my veins and slowly turning me inside out. Another hard corner I wasn't used to, another way I had to be aware of all my newly raw edges. One of these tubes was fitted badly, the end protruding a little too far into one of the chambers of my heart, the perfect place for a blood clot to form. Six months of blood-thinning injections into my stomach, six months of gathering together little pouches of skin to give the needle somewhere to go, six months of stinging and bruising and staring at my midriff more than I ever had in my life.

Every time it felt like I was beginning to scale the walls of this new flesh fortress, something changed and I was back on the ground, lost in a house that had been built around me, with no floor plan to show me the way out.

A comparison I distinctly remember: Your hair looks like a forcefield!

Almost two years ago, my hair started growing again. First, an almost invisible fuzz, the first membrane that would become a new skin for my shivering heart. I still looked like a Cancer Patient for a long time, a parade of haircuts that were all slightly too short or slightly too awkward to be intentional, the slow fade of scars both inside and out, the gradual filling out of my figure into its old curves and lines and pillows.

A year ago, I got a second piercing in my ears. I asked my consultant before I did it because I didn't know how much of a risk it was, and I remember how light my heart felt when he said I could. I am wearing studs shaped like tiny elephants now, a herd of two recolonising this old wasteland. I hope this body never again forgets who it belongs to.

Now, the only thing betraying that process of deconstruction and rebuilding is the small, bumpy scar just below my right collarbone, but it's not a reminder of fragility any more. It's a reminder that I'm still here and I'm still me, somehow, after all that. At the start of this year I had the first haircut I've had in over four years that didn't feel like making the best of a bad job. The way my hair slopes upwards from the nape of my neck, the place it parts at my forehead, the little wisps that fall in front of my ears: these are all things I chose, and things I would choose again even if I had all the hair in the world to choose from. The me I see in the mirror looks back at me with a steady gaze. Her skin isn't as feather-light as it was when she was seventeen and heedless, but it holds her mending heart with gentler hands.

I'd like to be her friend.