Amanda Hedges will never forgive herself for ‘forgetting to live’.
The 31-year-old thought she had enough time in the day to indulge in seaside vacations, trips to the zoo or adventures in the snack aisle at a Costco.
After all, only one of her grandparents passed away, and her impressive health history seemed to follow suit. She had never been to the hospital and expected to live a long life.
So she ‘gave most of her life’ to work, worry and simply ‘existence’.
Now she is dying of cancer.
The young Brisbane woman has Gioplastoma, an aggressive, terminal brain cancer.
It is inoperable and although she struggles through seemingly endless chemo and radio therapies, it will not cure her.
“The idea is to prolong my life, the cancer will not go away,” she told FEMAIL.
Amanda Hedges, 31, has months to live after being diagnosed with cancer
The young Brisbane woman said she “forgot to live” her life and wants other people to remember what’s really important
The heartbroken young woman’s cancer scare began in September, when she developed a few mild headaches after increasing her anxiety medication.
‘I asked my psychiatrist. They weren’t severe headaches and they went away with Panadol,” she said.
Her psychiatrist suggested an MRI, she had never had one before and the specialist noted that this might be a good idea given her age.
After the scan, Amanda was sitting in the waiting room when the radiographer came to her with a clipboard and told her they needed to repeat the process with contrast.
The bubbly blonde blurted out a joke, not realizing the punchline would make her world crumble.
“I laughed and said sarcastically, ‘What did you find… a brain tumor?’” she recalled.
‘And the radiographer looked at me terrified and said ‘yes’.’
Amanda immediately felt the room closing in on her, it started spinning and then went black.
Amanda is an only child and says she sympathizes with her father and mother, who will have to live with a cancer diagnosis much longer than she will
She says her friends and family have been there for her, making her realize how poorly she prioritized sometimes
‘I sat in the MRI and tried not to cry. Because when you cry, you move and they need a clear photo,” she said.
The next day she went to the doctor with her parents, but it was somewhat reassuring news.
“My doctor said the scans showed a growth, but it had solid edges and most brain tumors are benign,” she said.
There had been no serious symptoms, so everyone felt confident. Amanda was told she could wait a month before being seen by a neurosurgeon in the public system, or go private and be seen the following week.
Because of her history of anxiety, she chose the private route, unable to imagine not knowing for weeks.
The doctor ordered a FETPET scan, a special scan only available under private healthcare, an EEG and a CT scan.
Both the EEG and the CT scan looked good. But the specialist’s scan lit up, prompting her doctor to schedule a biopsy the following week.
“The scan showed the tumor was active, benign tumors are not active,” she explained.
‘And if you think of the scan as a traffic light: green is good, yellow is more worrying and red is very bad. It was all red and yellow, which meant it was very active.”
The biopsy revealed the tumor was cancer and Amanda went to oncologists, first meeting with a chemotherapy specialist who talked her through her options.
She says her mother’s support and cheerful enthusiasm help her stay positive even though she knows she doesn’t have long to live
The first week of radiotherapy was tough for Amanda
But those options were undermined a week later when she saw the radiation oncologists. He had the full results of the biopsy, revealing Amanda’s terminal diagnosis.
“My mom and dad blurted out questions and I felt myself shutting down,” she said.
Only one thing mattered to Amanda.
‘I finally asked, “How long do I have?” and the doctor told me maybe 15 months,” she said.
Her cancer is typically seen in “old people” between the ages of 60 and 80, with most living between three and 24 months after diagnosis.
‘I thought that would be good because I was young, I might last longer. But my cancer is big, which means it has been there for a while,” she said.
Amanda’s first six weeks of treatment included radiotherapy and chemotherapy, which left her feeling nauseous and breathless.
‘It was ready three days before Christmas. I slept on Christmas Day,” she said.
Two weeks later, she has finally recovered enough to think about how she wants to live before she dies.
“If I had my time again, I would do everything differently,” she said.
“I would book a holiday to Bali or go to a buffet or have a holiday at the beach and not worry about all the little things, about money,” she said.
She has a few weeks, until January 23, to make some of her bucket list dreams come true – before she starts chemotherapy again and feels too sick and limited by the distance she can travel from the hospital.
‘I really want to stay in a hotel on the beach and just listen to the waves and forget that I’m dying. Forget being me. Be someone else for a few days and relax and have fun,” she said.
‘I’ve also always wanted to go back to Australia Zoo and see Robert Irwin do a show. “I saw his dad do one when I was little, but I always put it off,” she said.
‘And I really want to go to an all-you-can-eat buffet. I think hotels could sort that out,” she laughed.
With less than two weeks before she is again irradiated with chemotherapy drugs, she realizes that she now has to make her dreams come true.
“I can’t do these things if I’m nauseous or having chemotherapy every day,” she said.
Amanda has one GoFundMe to help with her bucket list and medical bills that keep coming in.
“Radiotherapy was $750 a week, the FETPET scan was $1000, I have top health insurance but it doesn’t cover everything,” she said.
“I looked up hotels on the beach in Caloundra but I was shocked at how much they cost – it’s about $3,000 for a week,” she said.
She is currently receiving Centrelink payments as she can no longer work and has depleted her super.
She wants young people to look at how they live their lives. And take stock of what is important.
“None of my old bosses or coworkers are sitting with me while I do chemo,” she said.
‘It is my father, mother and friends who support me through this.
‘I wish I could live again, so I could stop worrying about the little things and enjoy myself.
This photo was taken after her brain biopsy – just weeks after her MRI scan
‘I would spend more time with the people who really matter, make more effort to meet someone and have children, to travel.’
Amanda also wants to go on a cruise, but isn’t allowed to leave the country because of insurance, so if she feels like it in the future, a ‘three day’ will suffice.
‘I also just want to enjoy Sushi Train without a budget. Just grab what looks good, instead of mentally counting up each plate because you’re too scared to spend $30 on sushi.”
Amanda’s condition has remained stable, with her main symptoms of fatigue, nausea and shortness of breath arising from treatment.
But things can go downhill at any time, and when they do, “it will go fast.”
“Doctors say I will have seizures and this will be a sign that everything else will get worse,” she said.
She will then likely go blind in her left eye and eventually her vital organs will shut down.
“They don’t know how long the cancer has been there or when that will happen, but it will happen,” she said.
‘I still haven’t processed it all. I thought I had so much more time.’
“I wasted 30 years of my life doing nothing and I still got cancer.”