World Cancer Day: Spike’s Story

Just Keep Breathing

In his darkest moments, Spike played the Ariana Grande song “Breathin” on repeat, and in her words “just kept breathing.” 

The lyrics sang by the global popstar helped him to focus, meditate, and dance, as cancer invaded his mind and body. 

“I was so weak, I couldn’t walk up a flight of stairs and found it difficult getting out of the bath without help,” he recalls. 

“I didn’t recognise myself in the mirror as I’d put on four stone - the side effects of medication. I had insomnia and was hallucinating. I was in a dark place. 

"Then I heard this song, by Ariana Grande, and the words described perfectly how I felt. For the first time in months, I wanted to move, be me again, and I just focused on breathing, the most basic of things I could do, to sustain my life.”

An Unexpected Diagnosis

On Christmas Eve, 2018, Spike, 47, a husband, and dad-of-two from Cardiff, was diagnosed with Stage 4 lung cancer with a secondary brain tumour. 

Super fit, in the prime of his life, and never a smoker, it was an unimaginable diagnosis. His medical team called it “unusual.” 

A week earlier, Spike thought he had a trapped nerve, now he was being told he had six to 12 months to live. 

Spike’s initial symptoms were vague: “I had an ache in my right shoulder that wouldn’t go away. I went to the doctor, and she thought it was muscular, nothing alarming. It continued, so I went back to the same doctor, increasingly frustrated the ache wasn’t going away. It had started to affect my lifestyle and mood. 

On the third appointment, my doctor referred me for scan. I’d seen the same one, I made sure of that, so I wouldn’t have to go over old ground. I think she saw a pattern, and my changing demeanor, so referred me for a routine scan.”

Minutes into the CT scan, Spike was told there was an abnormality on his brain. Admitted immediately to hospital, he was told he wouldn’t be going home that night. 

“I went through A & E and had to wait for a bed,” he said. “When I was on the ward, I was told I would be having a series of scans, different types of scans, to establish what was wrong. I was given little information, hadn’t heard the word cancer mentioned once, and I was feeling angry.  

I couldn’t understand what I was doing there. I was fit and strong, with a heart rate of 44 beats per minute, and relatively young.

I needed to find some gravity, plant my feet on the floor again, and understand what the hell was going on with me.”

Sat beside his wife Louise, the diagnosis that followed was crushing, both their worlds falling apart. 

Spike had two cancerous tumours, one on his right lung and the other on the brain. He was told he needed urgent life-extending treatment. 

Discharged, he was booked in the day after Boxing Day for a Craniotomy, a major op to treat the brain tumour, followed by targeted radiotherapy and chemotherapy. 

Coming to Terms with the Diagnosis

Still in shock, Spike and Louise rallied to make Christmas Day special for their children – Tyler, seven, and five-year-old Tilly – who were unaware dad was so sick. Meanwhile, Spike’s mind was racing. 

“Having lung cancer made no sense to me. My consultant told me the shoulder ache was due to the brain tumour affecting me neurologically. As for the lung tumour, I was living quite normally, no breathlessness at all. 

I’ve a history of persistent chest infections that were treated with a double dosage of antibiotics, but chest X-rays always came back clear. Thinking back, I also felt more fatigued in 2018, but I just put that down to being an active, busy person with a young family. 

“I remained positive. I knew I always ate healthy and was in good physical shape. I said to my medical team “you have a good patient to work with, so what can you do for me?” That was my attitude. I had the grit and the drive.”

A Lifeline

Spike was set back after Christmas when the hospital called him. He was told his surgery had been cancelled. The lead oncologist on his case, a Dr Jason Lester, had intervened last minute. believing there to be another, potentially lifesaving, treatment option. 

Little did Spike know he was about to take a massive leap of faith, delaying his planned life-extending treatment on an informed hunch from an Oncologist he had never met, but had one thing in common with – his Jamaican heritage. 

“I was told Dr Lester had intervened at my multi-disciplinary team meeting, believing me to be the right candidate for the treatment, based on this “genetic rearrangement.” I had no information. All I could do was trust in this knowledge.” 

It was his ethnicity, along with excellent underlying health, which made Dr Lester believe Spike was the perfect candidate for a new treatment, already big in the USA and recently made available in Wales. It was called Alectinib. 

Dr Lester was looking for four genes, including an important one that needed to be positive called ALK. There were no guarantees Spike would be a match though, and the clock was ticking. 

He would firstly need a biopsy, an EBUS, which took a month to organise with another health board. Meanwhile, Spike was having seizures, and his cancer spreading rapidly. 

“Quickly, I had tumours in my liver, lymph glands and spine. I was frustrated, enraged even, because I felt I was slipping through the net. My brain tumour that had been 12mm, was now 30mm, and I had passed the threshold for the Craniotomy and targeted radiotherapy.”

Tenovus Cancer Care

Spike had been told about Tenovus Cancer Care during diagnosis and he called their Support Line for some “practical” advice. 

“The advisors at Tenovus Cancer Care were great, answering my questions, and giving sound advice. They let me know what benefits I was entitled to, how to go about sorting my “death admin” out, and things I hadn’t even thought about - such as needing warmer clothes because I’d feel the cold more.”

As the weeks went on, test results delayed, Spike’s declining health took a massive toll on his family. 

“Louise was incredible, doing most things, and keeping me away from anything, or anyone negative,” he said. “The one thing I focused on was being up every day to see the children off to school. I would keep it together until they left the house. My family kept me going, and my children were so giving.”

Positive Results

In March 2019, Spike’s test results were finally back and more than 90% positive, including ALK. That meant Spike was more than a match for the treatment. The gamble had paid off. 

Spike was only the third person in Wales, and seventh across the UK, to be given Alectinib - a tablet which blocks chemical messages telling cells to grow, slowing down, and even stopping cancer. With the medication, there is no need for invasive surgery, radiotherapy, or chemotherapy. 

Taking the treatment proved to be a turning point for Spike. 

“Within a few days I started feeling better. I felt like I had stopped falling and landed somewhere. I started taking pigeon steps forwards and felt empowered, as if I had a companion now. I started to rebuild physically. For me it has been a wonder drug.”

Spike no longer has lung cancer, and his brain tumour has shrunk significantly. His case is also informing the medical community UK wide. 

Adjusting Back to Life

Taking baby steps, he is back coaching his son’s football team, going on family holidays, and working when he can.

Spike, an interior-architect, is also campaigning to raise awareness of cancer to young people, but also in the BAME community. 

When he was diagnosed, he was shocked to discover there were zero health statistics in Wales representing him. 

“I realised I wasn’t recognised as a young, black male, with cancer in any of the statistics, and I remember sitting down thinking…forget cancer, I am a black man with cancer! That needs to change, as it’s so isolating.”

Spike has represented Tenovus Cancer Care at events, sharing his story, as well as being featured on BBC Wales.

“I want to send out a message of hope to people who are unrepresented with cancer, like me. I want to raise awareness. I am grateful to Dr Lester for his intervention, to all the medical team, and to the science which gave me another chance at life. My mind is now focused on making a difference.”

Christmas was five years since Spike’s diagnosis, but he’s not taking anything for granted. 

“I am still checking if my shadow is behind me, or if a piano is falling from the sky”, he said. “On the toughest days, the days I feel down and struggling, I just remember those lyrics from Ariana, and simply keep on “Breathin.” 

To find out more about the incredible support Tenovus Cancer Care provides, visit their website here.