“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
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 Plus, my driving licence has been withdrawn.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
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.”