‘Until you are facing it, cancer can seem like such an alien concept. I have a 7-month old baby now and the thought of him going through what my dad did is enough to make me feel ill.’
Dad was the person most like me in the world. With his encyclopaedic knowledge of sports and music, unique sense of humour and no-nonsense approach to life, at 54-years old he was fit, happy, and at the centre of our family’s universe.
We were shocked when dad was diagnosed with stage 1 mouth cancer in February 2018. As worried as we were, at such an early stage we strongly believed that dad could be cured.
He underwent a major operation and a course of radiotherapy. At the end of his treatment, dad rang the ‘rainbow bell’, giving him the all-clear. And we went back to living our lives. This was a hopeful time for us all. We planned a dream holiday to Florida to celebrate and were so excited to make so many memories together.
Our dreams were shattered when the cancer re-emerged at stage 4, and had spread to his neck, two months from when he rang the rainbow bell. The video I have of him ringing that bell breaks my heart now, knowing what came after.
At 8-months pregnant sat in a cramped room, I had to watch to my mother and father when we received the devastating news that he’d be dead within 9-12 months. Watching them desperately hold on to each other sobbing “How? Why?” has haunted me since.
He was put onto the standard treatment protocol of a chemo combination for Head and Neck cancers. At 9 months pregnant I waddled around London to visit the leading oncologist in Head and Neck cancer in the Royal Marsden Hospital – there was hope of a potential clinical trial in the future. If he made it that far.
The cancer later grew into a fungating tumour that took over the right-hand side of his neck. It was horrendous to watch it grow and have to try to stay composed in front of my father as not to frighten him. In spite of this, the initial chemotherapy went well but he could only have a limited amount of cycles. After that, he went onto immunotherapy.
Desperate for more hope, my mother stumbled on an article online about genetic testing. That we weren’t told about this type of testing from the outset frustrates and saddens me – had we known earlier it could have made a difference, but now we will never know.
My father paid privately for the test. My parents have never had a great deal of money but with my father cashed in some of his pension to create a fund. The whole process from the initial consultation to the testing took about two months from January 2019. By the time we had the results, my father had died.
The small comfort was that dad still had hope, throughout it all. His fungating tumour was showing good signs in that it was drying up – he was hopeful even on his last day with us.
It is painful to think about that time, and what my dad went through. I miss him so much it hurts – it feels as though I’ve lost a part of myself. Dad’s illness was my first direct experience with cancer. Until you are facing it, cancer can seem like such an alien concept. I have a 7-month old baby now and the thought of him going through what my dad did is enough to make me feel ill.
ACT for Cancer is an amazing initiative. In the aftermath of my dad’s death, I feel as though the knowledge that could be gained from my dad’s tumour have been wasted. His was a rare form, showing rare mutations, and what was learned about it has not been put to any use. ACT for Cancer supports building a central database of results, allowing scientists to discover patterns, and perhaps even find better and more successful treatments – I couldn’t agree more with what they’re saying.
Incurable cancer doesn’t have to mean that someone is doomed. The one-size-fits-all way we currently treat cancer on the NHS has to end. Information and access to the best treatments available has to be open to everyone.
The latest statistics show that one in two of us will be diagnosed with cancer in our lifetimes. We simply don’t have the luxury of time to wait. We can’t take cancer lying down, and we have to fight to make a difference. By acting together, we can move mountains with numbers and make a real difference for someone else who needs it.