Jess’s Brain Cancer Journey
Brain cancer patient Jess Gouthro shares her story with Cure Cancer Australia
Sadly, most of us have been touched by cancer. Whether it is you or someone you care about who receives a diagnosis, the effects can be devastating for everyone involved.
Cure Cancer Australia exists to fund early-career researchers in their search for a cure, because we believe that by doing so we can help to make this the last generation to die from cancer. The inspirational and heartbreaking stories we hear from cancer patients, survivors and their loved ones are what drive us to continue funding life-saving research every day.
These stories are also incredibly useful to our researchers as it helps them consider their work from the point of view of the patients or their families.
Recently, we heard from Jess, a 35-year-old acoustic engineer from Melbourne. Late last year, Jess, her partner and their 2-year-old son were visiting family in Canada, when without warning Jess had a seizure in her sleep.
‘I’d had a few headaches leading up to the seizure, but no more than anyone else,’ says Jess. ‘The next thing I knew, I was waking up in Winnipeg Health Sciences to a doctor telling me they had found a tumour.’
Although the news came as a shock, Jess wasn’t initially concerned by the diagnosis. ‘The doctors played it down, telling me it was something called oligodendroglioma. They sent me home to my cousin’s place with some anti-seizure meds and I did my best not to google it.’
Two days later, Jess and her family attended a follow-up appointment with a neurosurgeon in Winnipeg, armed with a long list of questions. ‘The doctors there were great. But even after that appointment I still don’t think I fully understood how uncool it was, or even that it was cancer. I knew I’d have surgery. But then I thought it would all kind of go away.’
It wasn’t until she was back in Australia under the care of Royal Melbourne Hospital that Jess started to understand the verity of her diagnosis. ‘They confirmed that I had Oligodendroglioma Stage 2, left prefrontal cortex. I did a bit of research and at my next appointment with my neurosurgeon Kate Drummond, she asked me if I had any questions. I said, ‘So in some of your articles you say your patients typically only live 10 to 15 years…’ and she went ‘Yep?’. That was when I first realised that it was a big game-changer and didn’t just mean a surgery. I think I was expecting her to say ‘Oh haha but that isn’t you! YOU will live forever.’ It was a really rough day for all of us.’
Although Jess’s surgery removed 95% of the tumour, her outlook had changed. ‘I get it now, if you’re going to have a brain cancer, this is the one you want,’ says Jess. ‘But I really felt that the doctor I’d seen in Canada had made it seem like it wasn’t a big deal. I wasn’t worried about the operation, I trust science…but then the reality sank in. I’ll die when my son is a vulnerable teenager, our vision of doing our house renovation in 5 to 10 years is long shot, being excited about relaxing in later life is not a thing anymore. I’ve got a history of anxiety and depression which has been under control for a decade or so, and all that came crashing back down. Having no certainty of the future is really hard to tolerate. It’s been an incredibly dark year.’
Living With Cancer
Right now, Jess is doing well. She has no physical symptoms, her seizures are under control with medication, and she will undergo MRIs every half year. The emotional challenges, however, are a struggle. ‘The doctors describe this time as ‘watch and wait’. And I hate that because that word ‘wait’ feels like a reminder that a bad thing is coming. I want to punch the well-meaning friends and medical people who say things like ‘just live each day as it comes’. I know there’s no malice in what they’re saying, but what’s that supposed to mean? Be naïve?’
‘Other times, I’m OK. Sometimes it’s like I forget about it, and that can be a nice holiday. But it’s tough too as it’s further to fall when you remember the terrible truth. Generally, I’m way better than I was a month ago, which was better than the month before that. Let’s call it an upward trend.’
Why Research Matters
Now more than ever, Jess (who also lost her mum seven years ago to lung cancer) is an advocate for cancer research. ‘I have always loved science, and cancer research has obviously had a lot more of my attention this year. I already know that it gave Mum and countless others extra time and comfort that they wouldn’t have had 50 years ago.’
‘Research is at the forefront of creativity and science. It changes people’s lives - and saves them sometimes too. Without it we wouldn’t move forward.’
We can’t say exactly what the future holds for Jess, or for other cancer patients like her. But what we do know is that only research can help us to improve their outcomes. In the last twenty years alone, the 5-year relative survival has improved from 48% to 68%*. Who knows where we might be in another ten years’ time?
We won’t cure cancer without research. Join us in our mission to make this the last generation to die from cancer.
Cure Cancer Australia would like to express our deepest thanks to Jess for sharing her story with us. We wish you all the very best on the road ahead, Jess!