StoriesPart of Hidden Bodies

The leukaemia diagnosis I didn’t see coming

A print of a female convict in solitary confinement propelled Hannah Partos towards thoughts of her experiences of serious illness, when she too was kept in isolation.

Words by Hannah Partos

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Photograph of a young woman standing behind a projected image of a black and white illustration of a woman standing with her fists clenched.
Hannah Partos, Thomas SG Farnetti. Source: Wellcome Collection. Attribution-NonCommercial 4.0 International (CC BY-NC 4.0).

You look like a Holocaust victim.”

I could tell he regretted the words instantly. We looked at each other and almost laughed, shocked he had dared to say it. My dad, usually tactful, had seen my freshly shaved head for the first time.

Hours earlier, Kim, one of the nurses, had burst into my room. “You look just like Jessie J!” she said brightly. It was early 2013 and the singer had just shaved off her hair for Comic Relief.

The second most beautiful girl in Szeged

My paternal grandmother was born in 1923 in Hungary. She was the only one in her Jewish family not to be deported to a concentration camp. She evaded the Nazis with false papers and later hid in a farm cellar with the man she would marry, my grandfather. Her mother and two sisters survived the war. Her father was murdered in Auschwitz. 

She was, she used to tell us, the “second most beautiful girl” in Szeged, the town where she grew up. In her 80s, living in London with her second husband dead, her sisters dead, many of her friends also gone and her own health declining, doctors’ appointments marked a regular feature on her social calendar.

She wore coral-pink lipstick, Elizabeth Arden perfume and heavy chunks of amber on her neck and her blue-veined hands. Polishing herself, she once told me, so the doctors wouldn’t think she was just another elderly patient, so the doctors would think she was worth keeping alive.

An invisible and overwhelming force

It is February, biting cold, as I walk into the A&E clinic, on the orders of a GP, to get a blood test after weeks of fevers, swollen glands in my neck, severe throat pain and exhaustion like I have never known.

I am 22 and stupid. So stupid that even after a blood test in A&E shows my haemoglobin is half the level it should be – and makes me so scared I start crying – even after a blood transfusion and a scan through a machine that beeps at me, and an overnight stay in the hospital, and my veins spiked for more blood tests, even when three doctors come to my room the next morning and shake my hand, one by one, I don’t see it coming. Leukaemia. I am so stupid that, once the doctors have gone, I ask my mum, who’s now there too, How is that related to cancer?

That evening, an ambulance takes me to a larger hospital where I will start chemotherapy the next day. Where I will live for the next six months in near solitary confinement – or protective isolation, as they call it – because with a white-blood-cell count of zero, my immunity is virtually non-existent and I am at risk of contracting a potentially deadly infection.

A nurse gives me a quick tour of the ward that evening. “That’s the chemo room,” she says, and I can picture it now, with a sink and surface units and a fridge, like the grey back room of a cocktail bar, except with yellow warning signs, because the staff are mixing up cytotoxic drugs instead of drinks.

More: When isolation makes you ill.

Woking Convict Invalid Prison: a woman prisoner in solitary confinement. Process print after P. Renouard, 1889.

Days later, having been pumped with intravenous drugs, I ask another nurse, But when will I be taken to the chemo room? I had vaguely expected, without really understanding, to be taken into that room, steeling myself as I was blasted with an invisible and overwhelming force.

The nurse laughed. “What chemo room? You have all your chemo here, in your own room.” Years later, I am not sure if, in my ignorance, I had somehow imagined that having chemo was like going to the gas chamber.

Because I cannot speak, I am forced to write

Wormwood Scrubs Prison dominates the view from my hospital room, my cell. The high stone walls and towers feel too close. My window itself is permanently locked shut. I am not allowed visitors because of the risk of infection; only my divorced parents, who take it in turns to come and see me. My grandma’s dementia is taking over, my dad tells me. Names and the faces they belong to escape her. He has told her I’m ill, without giving details, and he doesn’t expect her to remember.

I become so weak that I struggle to walk. The chemo makes me nauseous and I vomit constantly, violently; an anti-sickness drug makes me hallucinate. Even the calorie drinks I am given make me gag. Later I see a picture of the exact same products in a newspaper report about detainees being force-fed in Guantanamo Bay. 

By the end of two chemo cycles, I am broken. And the worst is yet to come: the stem-cell transplant. The treatment is dangerous: the doctors say there is a 12 per cent chance it will kill me, but if I don’t have it, the cancer almost definitely will. 

I am given high-dose chemo and total-body radiotherapy to destroy my own bone marrow, and then a drip transfusion of a stranger’s healthy stem cells – not the operation that everyone imagines. The chemo side effects are torture. My hands and feet are burning hot; I plunge them into buckets of ice. I develop a form of pneumonia. My heartbeat runs dangerously high. My liver starts failing.  

The mucositis is the worst part: the mouth ulcers and inflammation in my throat are so severe that I cannot speak or eat for three weeks. Even a small sip of water is impossible. I am fed intravenously through the catheter in my neck. I am on a 24-hour morphine drip for the pain. Every night I am trapped in a horror film. I struggle to breathe, and cough up bowls of blood and mucus.

By the end of two chemo cycles, I am broken. And the worst is yet to come.

Because I cannot speak, I am forced to write everything down, furiously scribbling in notepads when I am desperate for more pain relief or anti-nausea injections, typing dozens of pages on my laptop.

I look back at the words and although I recognise my handwriting, I still struggle to believe it was me who wrote, in a message that could only have been for my dad: “I’m scared. Am I getting near the end?”

Slowly, I began to get better

The spoiler, of course, is that I am still alive.

One day, my dad arrives after visiting my grandma, shaking his head. My grandma, mostly incoherent, had suddenly mentioned me. “She wanted to know if you were still in hospital. She asked if you were better yet.”

Four years later, standing by her bedside, I wished I could have told her the answer before it was too late. That they released me eventually, but the next year was a blur of pain, surgery, blood transfusions, infections, injections, drugs with debilitating side effects, IV antibiotics, more hair loss, more hospital stays and many hours shackled to drip machines. That my consultant once told me he didn’t think I’d make it. That the year after that often felt like an endless stream of misery and fear. But that slowly, slowly, I began to get better.

And then I met the young man, just a year older than me, who saved my life: my stem-cell donor. That he’s kind and looks a bit like my granddad when he smiles.

I don’t tell her. She is tiny and fragile. The gentle rise of her breathing fills the whole room. I tell her I love her and kiss her goodbye.

About the author

Photograph of Hannah Partos

Hannah Partos

Hannah Partos is a writer whose work has been published in the Guardian, the Times and the Mail on Sunday, among others. She often works with Anthony Nolan, the UK’s stem cell register and blood cancer charity. In 2016, she won Anthony Nolan’s Journalist of the Year award.