“Receiving the diagnosis of a brain tumour is like living with a time-bomb. It’s like getting a death sentence and not knowing how long that sentence will be. My life has changed beyond recognition and is lived from scan to scan.
I don’t say this for sympathy but because I’m eager to raise awareness that unlike many other cancers, where research has led to more favourable outcomes, a brain tumour is for life, and currently there is no ‘five-year remission’ with brain cancer.
Before my diagnosis in 2012, things were very different. I was fit, very active and always seeking new adventures – backpacking across Australia in the days before TripAdvisor, running the London Marathon and gaining my motorcycle licence at 40. I threw myself into things 100 per cent. And with a husband and young son, and career in social work, life was very busy.
But change came frighteningly quickly. Experiencing a continuous seizure in my sleep, I was hospitalised and told on waking that there was a mass on my brain, later diagnosed as a low-grade glioma tumour. My life pivoted in that instant. Discharged with drugs and little else, I had to do a lot of research and learned the tumour would at some point become high grade. Then it was ‘watch and wait’.
By August 2013 that was no longer an option – the MRI showed the tumour was active, and surgery to remove it loomed. I was in shock, having had the impression I could settle into years of routine MRIs. Surgery to remove the eight cm-deep tumour was traumatic, although my recovery was quick, but then came more devastating news…the biopsy showed a cancerous high-grade tumour. I’ve since undergone further surgeries, infection, insertion of a false skull plate, radiotherapy and now aggressive chemotherapy.
A brain tumour changes everything. My marriage broke down and now I’m a single parent to our son. Significant time off work carries risk of dismissal, and I battle daily with nausea, headaches, crushing fatigue, memory loss and risk of seizures. Plus, my driving licence has been withdrawn. The old independent Sam – with hair! – has gone and I’m gradually moving through the grief towards acceptance of the new me.
It’s an emotional rollercoaster, but I’m learning life doesn’t have to be defined by a diagnosis, that friendships are richer and that feeling loved and supported makes a massive difference when the tumour steals the very essence of you.
I have no choice but to adjust and hold fast to the hope that a cure – or at least more effective treatments – will be found. We desperately need more funding to beat this cruel and most frightening disease.”