'I was told my cancer was terminal. What the NDIS said next left me speechless.'

When Tracey Bennett was diagnosed with Stage 4 renal cancer in 2018, her world shattered.

"I was told straight away that it was terminal — incurable — and that I would be living with this for the rest of my life, however long that might be," Tracey tells Mamamia. 

"There's nothing that prepares you for that kind of news. You don't just grieve for your health — you grieve for all the plans you had, the time you thought you still had, and the future you thought was ahead of you."

Tracey began treatment with immunotherapy, full of hope that it might buy her more time. 

Watch: Magda Szubanski shares her cancer diagnosis. Article continues after the video.

"When that worked, I was told the cancer was gone. Two years went by, I was living on a high, cancer-free," she said.

But her joy didn't last.

The cancer came back and Tracey was enroled in a targeted drug trial.

"It came with brutal side effects, and despite everything I endured, it didn't stop the cancer from progressing," she explained.

The disease has since spread to her lungs and liver. She added, "Now I'm undergoing radiation therapy as a last attempt to slow things down and manage the pain."

But managing cancer is only part of the battle.

"Living with terminal cancer isn't just about the disease itself," she says. "It's the exhaustion, the financial stress, the emotional rollercoaster, and on top of that, trying to still be a mother, a grandmother, and somehow find strength when your body is breaking down. Every day is a battle — physically, emotionally, and spiritually."

Tracey has endured long hospital stays, brutal side effects and, at one point, total loss of mobility.

"The lowest point came when I was hospitalised for a long stretch and lost the ability to walk. I don't remember much, but I never imagined I'd have to relearn how to use my legs, how to balance, how to get out of bed on my own," she says.

"I had always been an independent, active woman. I raised my kids, worked hard my whole life, and suddenly I needed help just to sit up. That experience broke something inside me."

The cancer's spread has drastically altered her everyday life.

"I'm constantly short of breath now, even walking across the room leaves me gasping. The fatigue from the liver involvement is overwhelming; I often feel completely drained, even after resting. I've also developed severe pain in my oesophagus, making it hard to swallow or eat. Some days, even drinking water hurts."

"I'm also starting to lose my voice. I can barely speak above a whisper at times, which makes it hard to communicate with my family or doctors."

Tracey's daughter has become her carer, while also raising four children — two of whom are neurodivergent. 

"That in itself is a full-time job, and then on top of that, she's making sure I get to my appointments, take my medication, and have what I need day-to-day."

'The most disheartening part of this entire journey.'

But the most painful part of Tracey's experience, she says, hasn't come from her illness.

It's come from the system meant to support people like her.

"Trying to access the NDIS (National Disability Insurance Scheme) has been one of the most disheartening parts of this entire journey," she says. 

"I've applied multiple times, and every time I've been rejected. Despite the fact that I have a terminal diagnosis, struggle with mobility, can't care for myself fully, and live in constant pain — I've been told I don't qualify.

"I've provided reports from specialists, described the daily challenges I face, and laid it all out, but still, the answer has always been no. The process is cold, clinical, and confusing. It's as if the system is designed to make it as hard as possible for people like me to get help."

Tracey has only ever applied for essential support — things like home care assistance, help getting to medical appointments, physiotherapy and occupational therapy. 

"These aren't luxuries, they're things that would make my day-to-day life a little bit more manageable and less painful. But each time, the outcome was the same: rejection."

Initially, Tracey says she was told she didn't meet the 'functional impact' criteria and that her needs weren't considered "permanent" enough, despite her diagnosis being terminal.

"Being told you're not 'eligible enough' while living in constant pain, with a disease that is killing you, is one of the most demoralising experiences I've ever had."

Tracey has recently reapplied to the NDIS, who have requested further medical documents that Tracey says will cost her $150 to obtain. "I have to wait until the next pay day, unfortunately," she tells us.

Without support, Tracey has no choice but to keep working.

"I still have to work as a house cleaner to survive financially, even though it leaves me in unbearable pain and bedridden for days after. I push through because I have no choice. The bills don't stop just because I'm sick.

"I'm not living — I'm surviving, and it's exhausting. Without formal support, I feel like I'm slowly slipping through the cracks, with no safety net to catch me."

Tracey believes the system needs to change — urgently. 

"The NDIS was designed to support people with disabilities, but it often feels like the system forgets those of us with terminal illnesses. The criteria are rigid and don't reflect the lived reality of someone who's chronically ill, deteriorating, and in constant pain.

"Terminal illness is a disability. It impacts every area of your life — physically, mentally, emotionally, and financially. There needs to be a more compassionate, flexible approach that allows for urgent access to support, especially when someone is in the final years of their life."

A spokesperson from the NDIS told Mamamia for a person with a terminal illness to be eligible for NDIS funding, their condition must cause permanent impairment (physical, intellectual, cognitive, neurological, visual, hearing or psychosocial), resulting in significant disability.

"The NDIS provides disability-related supports and was designed to complement, not replace, mainstream services the states and territories provide, such as the health system, which is responsible for palliative care," the spokesperson said.

"If someone with terminal illness and disability meets access to the NDIS, the NDIA aims to approve their first plan within 30 calendar days of becoming a participant.

"Where a person does not meet access to the NDIS, the Agency aims to help the person connect to other mainstream and community services."

"This was our last resort."

Tracey's final dream is to go on a cruise with her daughter and grandchildren.

"I imagined being out on the open sea, feeling the breeze on my face, watching the sunsets, and just… being free. Even if just for a little while. This cruise isn't just a holiday, it's something to look forward to. Something to remind me that there's still joy to be found in life, even when everything feels heavy."

Her daughter, Tara, has set up a GoFundMe campaign to try to make it happen.

"The aim is to raise enough funds for her and a nurse who can travel with her to make sure that medically she is safe during her travels," Tara writes. "This was our last resort, to give mum the time of her life, something that she deserves and if one of us could swap places with her, we would.

"Mum is our world, our kids' world, and she is such a huge part of our life, (it) breaks my heart that we can not do more for her."

Tracey says, despite the limited support she's received so far, she hasn't given up hope.

"After all the rejections and the feeling of being forgotten by the system, the GoFundMe reminded me that people still care. That my story matters. That I matter."

And that, more than anything, is what she wants people to know.

"I just want people to remember that behind every diagnosis, there's a person — someone who laughs, cries, dreams, and loves. I've been through so much, but I'm still here. I still want to live. I still have hope."

Feature image: GoFundMe