Several years ago, I’d been having headaches for a couple of weeks and then one day I collapsed at work. I was rushed off for tests and they found a grade 2 oligodendroglioma.
Within a week, I was having brain surgery. I got over that operation fairly well and didn’t need any more treatment at the time.
Last year, I found out that the tumour had returned and now included a new astrocytoma strain. That was a reality check. It had been nine years since the first tumour, and I guess I’d sort of taken my health for granted.
I think I was in denial for a while and I wasn’t particularly worried about the second operation, but I got more worried as the date came closer. I had no real problems from the surgery, it was textbook healing really, and the surgeon said they had got it all. But then he told me I’d need radiation therapy and chemotherapy, just to mop up any stray cells. That floored me – I hadn’t needed it the first time, so I thought I’d escaped it.
I had six weeks of radiation therapy, followed by six months of oral chemotherapy, and that knocked everything for six. I developed gastritis – that’s an inflamed stomach – and had to go on a very bland diet. I lost so much weight and strength, and I was very vague for a while.
Time has helped, but it has been very gradual. I started off with short walks and short bursts of activity.
I also talked it all through with my local Cancer Council – that kept me afloat. It’s been like an oasis and is still a big part of my life.
My wife Robyn was diagnosed with grade 4 brain cancer when she had just turned 50. After getting a diagnosis like that, you just go into shock for the first couple of days, then you start thinking about how things will change, you evaluate your life and what you need to do to help.
Robyn was pragmatic and realistic and wanted to get everything on the table while she was well enough. She wanted to make it as easy as possible on the kids – she was very brave in that regard. I looked ahead and knew there would be different stages and tried to work out how to prepare. I found support groups, both over the phone through Cancer Council and a local face-to-face group.
We were both working at the time of her diagnosis. Because it was brain cancer, Robyn knew her thinking processes would be affected and that it would be dangerous to keep working, so that was the immediate concern. After four or five weeks, I decided to leave work too because I knew Robyn would need support every day.
While you are going through this experience, you find the strength to manage. I had to take care of the medications, all the appointments, keep track of symptoms, keeping an eye on Robyn as she was moving about in case she needed assistance. It was really hard to see her struggle physically − she had been very strong in sports all her life, it’s just a hard thing to understand.