When I was seventeen, a fresh-faced boy and newly in love, I was diagnosed with a rare form of acute leukaemia known as acute undifferentiated leukaemia and given two weeks to live.
In the months leading up to the diagnosis I’d experienced a range of annoyingly persistent health issues, from cold-like symptoms to ear infections. Away in Ibiza on a family holiday, I noticed a peculiar rash that would appear and then disappear across various parts of my body. The doctors were stumped as to why these things kept happening and why their continual antibiotic prescriptions apparently weren’t that effective. They suspected glandular fever, so I was sent to the local hospital for a blood test. Later that day the telephone rang. Mum answered.
“‘That was the doctors Jode, they’ve got your blood results back and they want to see us down at the surgery. They say it’s quite important that we go as soon as we can.’ She was trying to hide her worry, trying so very hard.
‘Did they say why?’
‘No, just that we need to go down there now.’
‘Oh God, Mum. It’s going to be something horrible isn’t it?’ I said. Unease had turned to rising panic.
‘Now we don’t know that, let’s just pop down and see what they have to say,’ she replied.”
Once at the surgery, we were ushered into the office of a solemn-looking senior doctor who pulled no punches in delivering the news.
“‘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.
For a second or two, my mind stuttered to a halt as if struck by a processing error, a neuronal collision. The past and future combined and contracted at lightspeed, slamming me into the distorted, twisted present. Life as I knew it collapsed, crumbled into dust, and fell through my fingers. School. My family. My girlfriend. My friends. Would I even live to see another week?”
I was admitted to Shrewsbury Hospital’s Haematology Ward later that evening. It was clearly an extremely 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 entrust myself to the procedures and allow them to do whatever was necessary.
Despite my willingness to go with the flow, I felt a deep sense of unfairness at the timing. I was barely even an adult. 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 in bolstering my mental attitude.
Whilst battle metaphors are a contentious issue in chronic illness, my initial response was to acknowledge this 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, my immune system weak, I contracted bacterial pneumonia alongside MRSA. Struggling to breathe and in great pain, 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 that I understood as manifestations of the bacteria.
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. In late February 2000, at Birmingham’s Queen Elizabeth Hospital, I received a bone marrow transplant from her that saved my life.
The experience left me reeling, forever changed. I found it difficult returning to a society that didn’t seem to acknowledge its own mortality and fragility amidst a work-life balance skewed firmly in favour of the former. I felt myself somewhat on the outside, looking in at life.
Despite the many challenges, I emerged humbled, grateful, and full of questions. Over the years I sought answers and vital integration within spirituality. Yoga, meditation and shamanism helped guide me towards a place of peace and understanding. In the context of my own personal mythology, I came to view the experience as a kind of near-death initiation. It was a time that broke me apart, before slowly putting me back together again anew, expanding my sense of what it means to be alive.
For many years afterwards, I had the strong feeling I should write about it, as much for myself, as for anyone else. Following a few false starts and various life-writing courses, I finally began in 2015. The process of revisiting all those surprisingly clear memories has been quite a journey, but one I have thoroughly enjoyed. Having emotional distance from the actual events, as well as the time to process it helped greatly in this regard. It’s a piece of work I am incredibly proud of and I’m excited to see it soon fly out into the world.
It is my wish that this book can bring some form of hope to anyone dealing with a life-threatening diagnosis, whether you’re a patient, friend or family.
Chimera – Living Through Leukaemia, A Memoir was launched via a Crowdfunder campaign on 2nd August. You can find out more and pledge your support here.