Sadly, around 1900 people are diagnosed with brain cancer every year in Australia. And for many families what comes next, knowing who to turn to and where to access support can create a feeling of helplessness at an already emotional time in their lives.
“My wife Tracey was the heart of our home. We’d been together for 23 years and had two amazing daughters, Brooke and Bianca. She loved being a mum more than anything,” says Michael.
But when Tracey was diagnosed with brain cancer in 2022, their family’s world changed forever.
“I couldn’t stop worrying about the future,” says Michael. “How would I manage the situation? What about the kids? But Tracey was a fighter. She said early on the only thing we can change is our attitude.”
Over time, things took a turn for the worse. Tracey lost vision on her right side. Her body began to shut down, affecting her coordination. Her right leg dragged when she walked. The hardest part was when her speech began to fail.
“I could see how frustrated and isolated she felt, unable to say what she wanted to say,” says Michael.
For four months, Michael was Tracey’s full-time carer. Feeling overwhelmed and exhausted, Michael was unsure where to turn to for help until he found the National Advocacy Service.
A proud partnership between Cure Brain Cancer Foundation and Peace of Mind Foundation, the National Advocacy Service (NAS) provides direct support for patients and their families following a brain cancer diagnosis.
Dedicated NAS Advocates helps families navigate the complex process of applying for government funding through services like including the National Disability Insurance Scheme (NDIS), Centrelink and other government programs.
“I was completely overwhelmed until I met Rachael from the National Advocacy Service,” says Michael. “We knew we could apply for NDIS funding to help our family at such a challenging time, but the paperwork was just too much to handle amongst everything else we had going on. Honestly, I would’ve thrown it in the bin—but Rachael helped me with all of it. She was a godsend and our guardian angel.”
Far from just assisting with paperwork, Rachael became a friend and confidante to Tracey.
“Rachael would ring Tracey every day, and they got along like a house on fire,” recalls Michael. “I’d hear them laughing and giggling on the phone. Rachael could understand Tracey long after Tracey’s speech had slowed down.
“Every Thursday morning, Rachael helped Tracey write special letters for our girls — for their graduations, 18th birthdays, and wedding days. I wouldn’t have thought of that. I was too busy being a full-time carer, trying to keep everything going. But Rachael knew how important those letters would be.”
Rachael also helped the family when things took a turn for the worst and Tracey was admitted to Palliative Care.
“Tracey wanted to be home with her normal routine,” explains Michael. “So, Rachael and Palliative Care made sure that became a reality, helping us set up a hospital bed and all the equipment we needed in the lounge. Tracey was able to come home, and we were lucky enough to spend our 10-year wedding anniversary together in April. Tracey stayed at home until early May. She was only in hospice for five days until she passed. I miss her every day.”
Brain cancer impacts patients and their families in many painful ways. Consistent worries about the future, the financial burden of lost income, and the crippling feeling of isolation are all common, but devastating, problems for those living with the disease.
The National Advocacy Service is one of the many ways you can help to support patients, carers and families following a brain cancer diagnosis.
Your support can help families navigate those first moments post-diagnosis and provide a lifeline of much needed support.
