Day 731

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?

I am eventually allowed to walk down the corridor. The ceiling stretches away from me like a horizon. I had forgotten how big the world was. I only take about thirty steps, need to rest before I can make the pilgrimage back to my room, but it’s the most exercise I’ve done in three weeks. I look out the window and remember that there is a road out there. In the real world it is Christmas. An overheard carol, like a snowflake, settles on the floor of my heart. I am still empty, but when there is room for freshly fallen snow, maybe that isn’t such a bad thing.

***

December 10^th 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.

Durham is beautiful in the winter. On my way home, I look up at the enormous sky and feel the ground solid under my feet. I smile at nobody and the velvet clouds smile back. As I pass under the beam of a streetlight, a flurry of snowflakes catches the electric glow. In the moment they look like a shower of stars.  I am small in the best kind of way, so anonymous that I could even forget about myself. It’s good to be back.