The statistics can be crippling if you’re diagnosed with brain cancer. Roughly 1,400 Australians of the 1,800 diagnosed each year pass away – many of them children. However, when Wise woman (above, far right) Catherine Hindson’s daughter, Renee, was diagnosed with a grade three astrocytoma, neither knew much about brain cancer. Even after a long career as a former nurse and theatre manager, Catherine says she had no idea about the challenging statistics that faced a then-35-year-old Renee – a devoted mother of two.
“The simple truth is that there’s nothing benign about a brain tumour,” Catherine begins. “Even if you’re one of the so-called lucky ones who don’t have a malignant tumour (cancer), anything that’s happening in your brain is still horrendous.” As Catherine watched Renee experience the fear and confusion surrounding her condition – not to mention undergo a total tumour resection, chemotherapy and brain radiation – she realised there was simply not enough information, support or advocacy for those diagnosed with cancer of the brain.
However, since joining the Brain Tumour Alliance of Australia (BTAA) at the suggestion of her daughter, Catherine and her team have worked hard to champion awareness in Australia. “As volunteers who operate purely on donated money, we do not raise funds for research, but we have a 1-800 number that people can ring to get peer-to-peer support,” she explains of the BTAA. “We’re purely into support, advocacy and education – we even offer helpful information on our website and information packs for people who can tick off what they would like to receive.”
As the BTAA’s chairwoman, retired Catherine says the work that she does is forever on her mind, and that answering phones, sending out monthly e-newsletters, and releasing bi-annual magazines is no mean feat. “I’ll generally spend a few hours a day working on it,” she says. “But I couldn’t do what I do without the support of the amazing people I work with.” Now, the alliance also facilitates support groups and, with the help of Cancer Australia, has released what the team believes is a world-first resource on brain tumours – a booklet called It’s Okay to Ask, available in 10 languages in addition to English. “We put a lot of research into this resource and spent time in patient and carer discussion groups to really understand what would be best to include,” she reflects. “Nowhere else is this information so accessible in so many languages.”
In much the same vein, Catherine admires the Wise program for its accessibility and support. “Because I have so much on my plate, I don’t always have the opportunity to attend the sessions, but I know the team is just a phone call away,” she says. “It’s an incredibly supportive community.” Catherine adds that going to the initial Wise seminars helped her understand the basics of finance and allowed her to feel comfortable asking questions in the presence of welcoming, like-minded women. “When he was alive, my husband used to look after everything,” she shares, noting that although she would attend adviser meetings with him, she didn’t truly understand the discussions. “I’d say my advice to other women when it comes to being more ‘hands-on’ with their finances is to learn budgeting to understand where their money is going – that was something we were never taught.”
In the meantime, Catherine keeps herself busy as she continues raising awareness about the BTAA and what it can offer people affected by brain cancer. “In one’s normal working life, we don’t always have the opportunity to give back,” she reflects. “We’re always working, going out and enjoying ourselves, or supporting a husband and raising children. It’s only in retirement that we have the time, and I’m so glad that I’ve been able to give back.” Eight years after Renee’s diagnosis, Catherine says her family considers themselves lucky, but recognises that not everyone is in the same position. Looking ahead, Catherine says that she hopes everyone who is diagnosed with a brain tumour is told about the BTAA. She concludes: “Even if they don’t reach out to us, at least they’ll know the support and resources are there – and that can really make all the difference.”