When most people recall the memory of their partner proposing marriage, they remember the romance, the ring and the happy photos. I remember how my hands hurt from the IVs that were in them, and the tender spot on my back from the lumbar puncture. I can still picture the tears of despair running down my beautiful partner’s face.
Most of all I remember the black hole I was falling into. Three days prior I’d been hospitalised with a migraine, vomiting and hallucinations caused by meningitis. Two MRIs and a CT scan later, I was told doctors had found two tumours - one at the base of my skull in the centre of my spinal cord and one in the middle of my brain.
The next couple of days were a blur. I wanted to know how soon we could remove the tumours and what the treatment would be. I wanted to make plans and write lists. But that’s when the hospital neurologist delivered the kicker: the spinal tumour, Tommy, was so rare, it had an approximate occurrence rate of one in one million. He knew very little about it, but based on location he felt it was inoperable.
For the next three months I felt like I was living two lives. With the help of my dearest friend Selena - who is also my stepdaughter - I started planning our small, family wedding. To raise awareness of my rare cancer, I started writing a blog. And I tried to inject positivity and a sense of humour into things; I refer to my tumours as squatters in need of eviction. I named the tumour in my spine, Tommy, and the one in the clivus region of my brain, Clive.
But the other side of my life took place at night once my husband, John, had gone to sleep. I researched everything I could find about central nervous system cancers. I followed leads to clinical trials and joined every possible support group online. When I wasn’t doing that, I was Googling neurosurgeons and trying to find a prognosis. The problem was that there was so little information available.
I soon learned that surgery on Tommy would carry a 30 per cent chance of quadriplegia. We’d been to neurosurgeons in Canberra and Sydney who had both declined to operate. And due to the rarity of tumour type and its location, most neurosurgeons had performed such a procedure just once or twice in their career. And if I didn’t remove Clive eventually, the tumour could still cause quadriplegia. Because tumours grow. That’s their job description.
Everything changed
On September 28, 2018, John and I married in the garden of our home in Canberra. We were surrounded by his four children, my three children, plus some close family and friends. It was bittersweet, as by that point I had physically deteriorated and was using a walking stick. My GP was working very hard to keep my pain under control, but I was constantly tired. My new normal means a headache every day as well as increasing pain in my hands and feet.
But my constant internet trawling had finally achieved something. I learned that a clinic in the United States specialised in these tumours. John and I flew to Bethesda, Maryland for assessment in March last year. The trip was physically exhausting and I ended up using a wheelchair part of the time. We met with an experienced neurosurgeon who accepted me into a trial. That meant all treatment, including surgery, could be fully funded by the clinic.
In March this year, we flew back to the US for another MRI to decide what to do. Within a few days of landing, however, COVID-19 had escalated so quickly and unexpectedly, we had to scramble to find a flight home to Australia before the borders closed.
We never made it to the US clinic.
Back home, we self-isolated for two weeks before having the MRI done in Canberra.
The MRI results were unexpected. It showed that Clive is slowly growing. And while not malignant - there is a saying in the brain tumour community that ‘Benign ain’t fine’ - your skull only has room for your brain and no extra squatters.
Tommy is currently stable, but for how long?
I’m now faced with a difficult decision further complicated by COVID-19. Do I go to the US and have Tommy operated on with an expert who has done the procedure more than 30 times? In some ways, it’s the best choice. But international borders are closed indefinitely and it would also mean recovering from surgery on the other side of the world with only my husband and no other support for an unknown period.
Or, do I try and find a neurosurgeon in Australia to operate? I have lots of support here alongside a fabulous GP and neurologist. That being said, they’ve never treated this in their careers. And I’m risking quadriplegia if the surgery goes wrong.
The other complication is I’m now not even sure if they can operate on me, given I’ll need to recover in ICU for at least a week after surgery, at a time when ICU beds are needed for COVID-19 patients.
The longer I leave my decision, the more my neurological deficits will worsen. And they’re irreversible.
Do I simply make no choice at all and let nature take its course? But the ACT doesn’t yet have assisted dying and I don’t feel I can live as a quadriplegic. Right now, none of these feel like a choice at all.
