I’m sitting on the floor of my isolation room in the Young
Oncology Unit because as pathetic as I feel I cannot spend another minute in
bed. I slot together two jigsaw pieces and begin searching for the next, if
only to distract me from the gnawing wrongness in every part of my body. The
deep heaviness of my limbs and the dizziness swimming just behind my eyes are
rendered sharper by the restlessness of my thoughts. Chemotherapy is exhausting
but my brain never got that memo. The blinking, beeping semi-darkness of the
hospital night is when the fear comes out to play.
The colours are brighter here. Every part of me screams for
quiet but from the four-hourly vitals checks to the pins-and-needles singing in
my extremities to the gradual dissolution of the mucous membranes in my mouth
and throat, all the layers of this existence are loud. An alternate reality of
inescapable presentness. I wonder if this body will ever feel like home again.
There’s a pizza box on the floor next to me. An expensive
branded delivery done every week for the kids on the ward. It’s supposed to
take the edge off the misery I think, but I only ate two bites before setting
it down again. My mouth doesn’t know flavours anymore and the inoffensive margherita
commits a mutiny as it scrapes down my raw oesophagus and churns up the
currents of nausea in my tattered stomach. I don’t remember the last time food
looked appealing. The abandoned pizza makes me want to cry.
A Picasso body, viewed from too many angles, sharp and
uncanny and profoundly strange. How to take the edge off when the painting is
made entirely of edges? They tell me there is a light at the end of the tunnel
but if I fix my gaze on it, I see it switch off, then on again. Three seconds
on, one second off, and repeat, a flashing beacon that demands to be noticed
even when I’m not really looking at it. It dances at the corner of my vision. About a quarter of all allogenic transplant
recipients die within the first year. I remember signing the consent form,
painfully aware of the statistics outlined above my signature, the risk of
having this procedure, the risk of not having
it. It’s too late to go back now. Over the past few days the nurses have
watched my white cells count down to nothing, sand drip drip dripping through
the neck of the hourglass.
Day zero comes round and I feel like zero too, a gaping hole
of a person waiting, wishing, to be filled in again. Smile at my parents, smile
at the nurses, thank you thank you thank you, smile at the blank ceiling. Smile
at my sister, who’s excited, proud, but I can see a hint of blankness in her
too. She’s provided the paint that’s going to fill me in again, had a fleeting
taste of the life of tubes and cells and needles, a fleeting taste of how it
feels to be emptied out by all this. I do not have a monopoly on fear. Still, I
am afraid.
When they attach the bag of stem cells to my central line
and start the slow trickle, my lungs protest. Even at absolute zero, alive but
only just, my body tries to fight for me, to tell me these cells do not belong here. Desperation tightening as I lean
forward, trying to draw breath through a storm of coughing. It’s probably only
a minute or so before the intravenous antihistamine kicks in but in that one
horrible minute I am convinced I am about to be one of the twenty-five percent.
The bad statistic. My sister’s stem cells are too good for my dilapidated body
to handle.
Miraculously, my airways open again and I am brought dizzy into
my new life. It is almost the same as the old one. I am still forced
to pull the drip stand around behind me like a ball and chain. The chemotherapy
may be over but my IV is still force-feeding me a steady diet of
immunosuppressant to persuade my immune system to settle into its new home,
steroids and vitamins, fluids and platelets. Like a premature baby, I cannot be
trusted to survive alone.
In the 3am electric twilight my vitals are taken and
suddenly they need more blood. My central line is playing up so in a
sleeping-tablet and chemotherapy induced haze my arms are needled. My veins are
fugitives in the night, reluctant to surrender their hard-won treasure. Nobody
will tell me what is wrong. I hear the word ‘infection’ and the light at the end
of the tunnel blinks out again. About a
quarter of all allogenic transplant recipients die within the first year. What
a cruel irony, to survive cancer and die from a cold.
The infection drowns in a flood of medical scrutiny and
antibiotics. I cry into bowls of spaghetti hoops, coaxed into just another mouthful
like a toddler, gulp down sobs and yoghurts because even the pain of swallowing
is better than the indignity of a nasogastric tube. I do jigsaw puzzles and doze
through Christmas films and smile because even if it’s a lie it’s still better than
nothing. I lose count of my thank yous. I insist on showering alone, sit on the
floor under the stream of water, and ache for soap that smells of grapefruits
and summer, not this antimicrobial wash that smells of science and anxiety. Half
of me wants to stand up, let the spots in my vision grow and fill my head and
block out the world, even if only for a second. A moment’s retreat from the
monotony of this featureless existential hinterland. My shed hair collects in
the drain like a dead animal. The end of the tunnel recedes into the distance.
I have not moved an inch.
My blood cells begin, sheepishly, to multiply. A beaming
doctor calls me a miracle and I smile smile smile, and this time it’s not entirely
empty because this means hope – but why can’t I feel the cells bursting into my
blood? Why do I still feel so flat and small and hollow? Weren’t they supposed
to fill me in?
***
December 10th 2017. Day seven hundred and thirty-one.
Exactly two years since day zero. I wake up with a scratchy throat, prop myself
up in bed and try to cough out all the phlegm that’s built up overnight. My
limbs are heavy, head hazy with the cotton-wool of a winter cold. But when I
finally swing my legs over the edge of the bed, I can stand up and my vision
stays exactly where it was. My legs do not have any trouble holding me up. The
shower is a flight of stairs away from my bed; I take them two at a time, crack
open the window and breathe in the morning. I shower with soap that smells like
grapefruits and sunshine, spray myself with lemons and lavender. I run my
fingers through my hair, and it still amazes me that no strands come away in my
hands. It reaches my chin now. I don’t think I will grow it any more. This
length feels like home.
I feed myself cereal and bananas and yoghurt, and they sit
in my stomach like a friend. I wonder if I am coughing too much to go to band
practice, but I go anyway, because it’s Christmas and I am not in a room on the
Young Oncology Unit anymore. I go because I can. It feels good to go outside
without asking for permission. I walk along the river, look up at the cathedral,
feel the lightness of my bones. Winter burns my chest but I can warm it away
with tea and laughter. I have not had a blood test in eight weeks. At the end
of band practice we play through some Christmas carols. They settle into my
bursting heart, a sparkling sigh.
