Federal Member for Robertson, Dr Gordon Reid MP, has met with local Umina Beach husband and father of two, Mr Tom Tapson, 38 years old, who lives with a rare form of brain cancer, grade 2 oligodendroglioma.
Mr Tapson discussed his journey with navigating the health system, and the support he has received through Rare Cancers Australia, as well as his advocacy role with the organisation.
Rare Cancers Australia is the peak advocacy and awareness body for Australians living with rare cancers. In Australia, someone is diagnosed with a rare or less common cancer every 12 minutes, that is approximately 120 Australians every day.
Quotes attributable to Federal Member for Robertson, Dr Gordon Reid MP:
“It was an honour to meet with Tom and discuss his lived experience since being diagnosed with a rare form of cancer. Tom’s experience in the NSW health system has been exemplary, and he has felt well supported through the various clinicians he has been treated by.
“Tom has taken up an advocacy role with Rare Cancers Australia and will be visiting Parliament House in Canberra during September to speak to parliamentarians about his diagnosis and healthcare journey, as well as raising further awareness for Australians living with a rare cancer diagnosis.
“It is truly inspiring to hear from constituents, like Tom, on the Central Coast, who are championing causes and engaging with elected Members of Parliament to share their own experiences, as well as that of others.
“I look forward to supporting Tom on his visit to Parliament House, and the wider Rare Cancers Australia delegation, and hope to help amplify their important advocacy messages.”
Quotes attributable to Mr Tom Tapson, Rare Cancers Australia Advocate:
“Two years ago, I couldn't have told you anything about rare cancers. Now I know awareness isn't just about the person diagnosed. It's about every family member, friend and colleague who suddenly finds themselves on the journey too.
“One of the best things people did for me was keep being themselves. They didn't feel like every conversation had to be about cancer. We still laughed, caught up, played some golf and talked about everything else going on in life. That sense of normality meant more than they'll probably ever know.
“I didn't choose to have a rare cancer, but I can choose what I do with the experience. If sharing my story helps even one person feel less alone or encourages someone else to learn more, then it's worth telling.
“Take a moment to learn about rare cancers today. Hopefully you'll never need that knowledge, but if you do, you'll be glad you have it.”
Rare Cancers Australia is looking for volunteers, complete an expression of interest via its website, or you can shop for merchandise or donate, where all proceeds go towards supporting patients and their families, visit: https://www.rarecancers.org.au/
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