Wiradjuri junior Elder, Leonie McIntosh, was in the final throes of her PhD thesis when diagnosed with brain cancer after having difficulties navigating her computer while at work in regional New South Wales in 2015.
Leonie, aged 41, has two children, a 16-year-old daughter and a four-year-old son. The diagnosis has up-ended her work, study, family life and her community role. She can no longer drive or help others as much.
“I guess life isn’t as fun as it used to be,” says Leonie.
Access to local palliative care and the Aboriginal Health Service has brought about some welcome changes to Leonie’s daily life giving her the opportunity to reengage in cultural activities and take time to connect to her world, especially her son.
“My prognosis is long term but at any time I could have a seizure or something could go wrong, so we always hope that we’re going to beat this thing,” says Leonie.
“The palliative care team come one or a couple of hours each week and they take me to a park, me and my son, and we go and he does kid stuff, explore the wild and have fun. They can take me shopping, if there is something on that day, we can go to that. You know, it’s just a chance to do normal stuff outside of specialists.”
Leonie has tapped into a health diary service offered to Aboriginal patients to help alleviate some of the stress involved in managing multiple medical and allied health appointments.
“Without that, I really wouldn’t have coped with the first six months of getting back from hospital and all of that stuff,” Leonie says.
Access to emotional support has been reassuring for Leonie: “Not only are they good for those practical things, they are also really emotionally supportive and so it’s good to just have a normal yarn with someone”.
“If (the nurse or volunteers) recognise any changes in my voice, they come and meet me,” Leonie says.
“They’ll ring me up and if I need them, they’ll come straight around. Or I can ring them 24/7… There was a time when I was quite ill, so my daughter, I think she rang palliative care nurse and they told her what to keep an eye out for.”
Leonie says the team also helped her plan ahead in a practical way.
“I don’t have a formal will … I didn’t know about the ambulance care plan … when you get cancer you don’t know about any of that kind of stuff and if you’ve got a really good palliative care team they can make it less confronting and less scary,” Leonie says.
“I’m only forty-one, I never thought of dying.”
Palliative care has enabled Leonie to find life’s sweet spots.
“I’m slowly getting myself back into the bush and walking. I get very fatigued from the medications and stuff. It’s been quite a challenge but I still walked maybe 2 or 3 kilometres a day since diagnosis, when I’ve been well.”
When our loved ones are diagnosed with a terminal illness they deserve the best possible care and support. But, right now, that’s not always possible because there's a shortage of specialist palliative care in NSW. That’s just not good enough. We need the NSW Government to fund an additional 139 doctors and nurses and to meet the palliative care needs of Aboriginal communities.