When Spike was diagnosed with ALK+ lung cancer, he was given a prognosis of 6-12 months. That was back in 2018 and he is now no evidence of disease (NED).
Spike joins our Be Unforgettable campaign to challenge many of the misconceptions around lung cancer – from who can get it to proving you can live well with it.
“I have always been supremely fit and healthy. I enjoyed daily gym workouts and did 5ks for fun. I have never smoked and had no underlying health conditions, so it’s safe to say lung cancer was never at the front of my mind – even when I started to experience symptoms.
“In 2017, I went through a period of having recurrent chest infections. I ended up having 8 weeks of antibiotics. I did have a chest x-ray as well, but this was clear, and no further action was taken. The infections eventually stopped so I presumed all was fine.
A new, unusual symptom
“During the second half of 2018, I felt a constant tiredness which I put down to being a husband and father of two with an active family lifestyle, long working hours, and daily physical exercise. Then, following a routine gym and swim session, I felt a sensitive ache in the back of my right shoulder blade and down my arm. Over the next six weeks, the pain grew worse. During this period, I visited my GP on three occasions. They put it down to a muscular injury and told me to rest, but the pain remained.
I made sure I kept going back to my doctor and kept seeing the same doctor, so they were up to speed with my full history. By the third visit, I was adamant further investigation was needed.
“It was visible how much pain I was in so my doctor, at a bit of a loss, sent me for a general scan to investigate my head, neck, and shoulder area. She certainly didn’t consider lung cancer. Instead, the scan was to look for a potential trapped nerve or infringement.
“The scan was actually stopped midway through, and I was immediately admitted into hospital. I underwent a further brain CT and MRI as well as a chest CT and, on Christmas Eve 2018, I was diagnosed with stage 4 lung cancer.
Mental and physical decline
“Cancer has a catastrophic impact on your life. It also has a marked effect on how you feel about yourself. I was used to living a healthy, active life. Then all of a sudden, everything changed.
“I gained a lot of weight and started to develop underlying health conditions with a heart rate of 54bpm (prior to my diagnosis I had healthy heart rate of 44bpm). I was unable to walk any distance and was suffering with swollen legs, ankles, and joints. I had gone from enjoying 5k runs to being out of breath and clutching my chest after climbing up a flight of stairs. We were forced to move our master bedroom into our front lounge on the ground floor, so I didn’t have to go upstairs as much.
I was unrecognisable to myself in the mirror, even to my wife and children who were 5 and 7 years old at the time. I was also unable to wear my wedding ring because my fingers were so swollen. This was especially difficult for both my wife and me.
“I constantly felt fatigued and nauseas with muscle weakness and aches, which affected my personality and caused major mood changes. I suffered with brain fog, a lack of empathy, chronic insomnia, crippling fatigue, constipation, and hallucinations.
“The cancer was dismantling and eroding every part of my life and it was a question of how much more I could take. I kept myself sane by focusing on my breathing, my will power and to try and live positively within each day because I knew I may not have a tomorrow.
“Following my diagnosis, I had several wishes that gave me hope. I wanted to have another Christmas with my wife and family. I want to see my wife thrive in her career after completing her master’s degree. I wanted to see my son walk through the school gates of his secondary school and my daughter to start Year 5.
A long road to the right treatment
“The initial treatment plan was to undergo a craniotomy followed by targeted radiotherapy and chemotherapy. However, Dr Jason Lester, himself of mixed heritage, intervened. He believed I should be genetically tested for molecular profiling for EGFR, ALK, ROS-1 or PDL-1 markers.
“Back in 2018, this was still a relatively new process; I believe I was only the second person in Wales to undergo these tests. I trusted Dr Lester but had to endure a three month wait for the results. During this time, I only received maintenance steroids, but I was rapidly declining, and my prognosis was poor to zero.
“The wait, as awful as it was, proved worthwhile; my genetic test results confirmed I was ALK+ and started on the targeted therapy, Alectinib. Within days I felt like I had landed and no longer free falling into an abyss.
“With the exception of some minor side effects, the treatment has been phenomenal. My primary lung tumour has gone, and body is clear of cancer. My secondary brain tumour has reduced significantly from 32mm to 12mm.
Nearly five years on and I am finally beginning to thrive, with a sense of wellbeing and improved mobility, strength, and balance. I am back in the gym and swimming actively and have also returned to work.
“And as for those wishes, they’ve all come true. I have enjoyed four more Christmases with my family. My wife is flourishing in her work with young people and adults as a psychotherapist in the education and charity sector. And in September, I watched my son walk through his secondary school gates for the first time.
Sharing my experience
“This is why I wanted to share my story. I want to try and offer some hope in even the darkest of times – to raise awareness of the symptoms in young people and the importance of early diagnosis and, to offer some reassurance to the underrepresented BAME community of good outcomes from early engagement with primary care.
“My prognosis was dire, and my life was devastated. My ethnicity was not represented in the statistics for cancer patient’s outcomes, or factored into my initial prognosis or treatment, adding further despair and isolation to an already bleak outlook.
“But I am now approaching that momentous five-year milestone. I have rebuilt my body, my mind, and my life. I am no longer merely surviving; I am thriving, and you can too.”
You can follow Spike on Instagram @talk.cancer