Jody’s story: From two weeks to live to publishing a memoir

Jody was diagnosed with a rare form of leukaemia in 1999 when he was just 17. Now years on, he has written a memoir about his experience and he's shared an extract with Young Lives vs Cancer. He wants to let children and young people going through cancer know they are not alone - and you can achieve anything you put your mind to. Read his story and campaign to publish his memoir....

When I was seventeen, a fresh-faced boy and newly in love, I was diagnosed with a rare form of Acute Leukaemia and given two weeks to live.

In the months leading up to the diagnosis I’d been experiencing persistent infections and a peculiar rash on various parts of my body. After a blood test to rule out glandular fever, I was called to the local doctor’s surgery urgently:

“Jody we received a call from the hospital an hour ago regarding your blood test. Your white blood cell count is three-hundred and twenty-three, that’s extremely high. I’m afraid…” – he paused, perhaps trying to find the words – ‘”you have leukaemia.”

What can you say to that? What is the official reaction to a cancer diagnosis? Tears? Anger? Anguish? All of that. Yet at first, for me, there was simply nothing. A void.

After what felt like forever, I wiped my eyes with Mum’s tissues, blew my snotty nose, and looked up at the doctor. He shifted uncomfortably in his seat, his pale face painted with sorrow. He sighed deeply and looked down at his computer screen, searching for something helpful to say.

“Can it be cured?” I said.

Jody when he was diagnosed with cancer, aged just 17.

I was admitted to Shrewsbury Hospital’s Haematology Ward that same evening. It was clearly a critical situation. My attitude from the start was to place my faith in the haematology team, led by the brilliant Dr Nigel O’Connor. I resolved to submit myself to everything they put me through.

On the threshold of adulthood and several months in to a new relationship, I felt deeply that this shouldn’t be happening. Life had just started to get exciting, there were so many opportunities ahead of me and I was determined not to miss them. I am thankful to have a family who dropped everything to support me. My girlfriend Tasha stuck with me and her loving presence was incredibly important.

Whilst battle metaphors are a contentious issue in chronic illness, my initial response was to acknowledge the fierce sense of determination brewing inside me, as if somehow I could feel the cellular fight going on inside. My focus was firmly on a future beyond the disease, whilst working to accept the possibility that I might not make it out the other side.

I feel it is important to mark a show of force, the defence of one’s boundaries, as distinct from more overt military metaphors. Not all force denotes a war. It can be an innately self-protective mechanism, much as an Aikido master would take the approaching energy of his opponent and divert it so as to use it against them. The defence of all I held dear felt appropriate, necessary. After all, at the cellular level an incredible battle was occurring. The foot-soldiers and assassins of my immune system had not given up and sat back, they were furiously engaged every second of every day.

After the third round of chemo, I contracted Bacterial Pneumonia. With my survival truly in the balance, I was admitted to the ICU. Whilst on self-administered morphine, I spent several days out of my body, thinking I could teleport myself and having extremely vivid adventures in a desert dream world, guided by an old hippie cowboy and a military combat team. During one of these dreams, I became lucid and realised that we were actually inside my body, inside my lungs, killing armies of terrifying black entities.

After recovering, I was eventually declared in remission. But the best news was yet to come. My eleven-year-old sister, Jessie, was found to be a perfect bone marrow match. At Birmingham’s Queen Elizabeth Hospital I received a bone marrow transplant from her that saved my life.

Jody today is launching a crowdfunder to publish his own memoir

The experience left me reeling, forever changed. I found it difficult returning to a society that didn’t seemed to acknowledge its own mortality and fragility amidst a work-life balance skewed firmly in favour of the former.

Despite the many challenges, I came out humbled, grateful, and full of questions. Over the years, I sought answers and vital integration through yoga, meditation, and shamanism. I spent many years working understand the experience in the context of my own personal mythology, ultimately coming to see it as a kind of initiation, a blessed gift that expanded my sense of what it means to be alive in this world.

Then, in 2015 I decided to write a book about it. Chimera Living Through Leukaemia, launched via a crowdfunder campaign. To find out more about the book, click here.

Author: Suzi Neill

Posted on Monday 9 August 2021

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