Amanda Hedges will never forgive herself for ‘forgetting to live’.
The 31-year-old thought she had plenty of time to splash out for seaside holidays, trips to the zoo, or visiting the snack aisle at a Costco one day.
After all, only one of her grandparents has died and her impressive health record looked like it was following suit. She had never been to hospital and expected to live a long life.
So she ‘gave most of her life’ to work, worries and simply ‘existing’.
Now she’s dying of cancer.
The young Brisbane woman has Glioplastoma, an aggressive, terminal brain cancer.
It is inoperable and although she’s fighting through seemingly endless rounds of chemo and radiotherapy, it won’t cure her.
‘The idea is to extend my life, the cancer won’t go away,’ she told FEMAIL.
Amanda Hedges, 31, has months to live after getting cancer
The young woman from Brisbane said she ‘forgot to live’ her life and wants other people to remember what’s really important
The heartbroken young woman’s cancer horror began in September when she had a few light headaches after upping her anxiety medication.
‘I asked my psychiatrist about it. They weren’t bad headaches and went away with Panadol,’ she said.
Her psychiatrist suggested an MRI, she had never had one before and the specialist noted it could be a good idea, given her age.
After the scan Amanda was sitting in the waiting room when the radiographer came toward her with a clipboard – and told her they would have to repeat the process with contrast.
The bubbly blonde blurted out a joke, but didn’t realise the punchline would send her world crashing down.
‘I laughed and said sarcastically “what did you find… a brain tumour?”,’ she recalled.
‘And the radiographer looked at me, dead pan, and said “yes”.’
Amanda immediately felt the room come in on her, it started spinning and then went black.
Amanda is an only child and says she feels for her mum and dad who will have to live with her cancer diagnosis for much longer than she will
She says her friends and family have been there for her – making her realise how badly she prioritised things at times
‘I was sitting in the MRI trying not to cry. Because if 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 mass but it had firm edges and that most brain tumours are benign,’ she said.
There had been no major symptoms so everyone was feeling confident. Amanda was told she could wait a month to be seen by a neurosurgeon in the public system, or go private and be seen the next week.
Because of her history of anxiety she opted the private route, she couldn’t 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.
The EEG and CT scan both looked fine. But the specialist scan lit up – prompting her doctor to schedule a biopsy the following week.
‘The scan showed the tumour was active, benign tumours aren’t active,’ she explained.
‘And if you think of the scan like a traffic light – green is good, yellow is more concerning and red is very bad. It was all red and yellow – which meant it was very active.’
The biopsy revealed the tumour was cancerous and Amanda started to see oncologists, meeting with a chemotherapy specialist first who talked her through options.
She says her mum’s support and bright spark help to keep her positive despite knowing she doesn’t have long to live
The first week of radiotherapy was tough for Amanda
But those options were dashed a week later when she saw the radiotherapy oncologists. He had the full results from the biopsy and revealed Amanda’s terminal diagnosis.
‘My mum and dad were blurting out questions and I just felt myself shutting down,’ she said.
For Amanda only one thing mattered.
‘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’ aged 60-80 years old 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 already been there for a while,’ she said.
Amanda’s first six weeks of treatment included radiotherapy and chemotherapy and left her feeling nauseated and breathless.
‘It finished three days before Christmas. I was sleeping on Christmas day,’ she said.
Two weeks later and 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 different,’ she said.
‘I would book a holiday to Bali or go to a buffet, or have a holiday on the beach and not worry about all the little things, or 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 is limited by how far she can travel from the hospital.
‘I really want to stay at a hotel on the beach and just listen to the waves and forget that I am dying. Forget that I am me. Be someone else for a few days and just relax and have fun,’ she said.
‘I have also always wanted to head back to Australia Zoo and see Robert Irwin do a show. I saw his dad do one when I was a kid but I have always just put off going.
‘And I really want to go to an all-you-can-eat buffet. I guess hotels would have that covered,’ she laughed.
With less than two weeks before she receives chemotherapy drugs again she’s realised she must live her dreams now.
‘I can’t do these things when I am nauseous or on chemo every day,’ she said.
Amanda has created a GoFundMe to help with her bucket list and medical costs which continue to come in.
‘Radiotherapy was $750 per week, the FETPET scan was $1,000, I have top-tier health insurance but it doesn’t cover everything,’ she said.
‘I looked up hotels on the beach in Caloundra, but I was shocked by how much they cost – it is like $3,000 for a week,’ she said.
She is currently on Centrelink payments as she can no longer work and has exhausted her super.
She wants young people to look at how they are living their lives, and take stock of what matters.
‘None of my old bosses or colleagues are sitting with me while I do chemo,’ she said.
‘It’s my mum and dad and friends that are here supporting me through this.
‘I wish I could live again so I could stop worrying about the little things and enjoy myself.
This picture was taken after her brain biopsy – just weeks after her MRI scan
‘I would spend more time with the people who actually mattered, make more of an effort to meet someone and have kids, to travel.’
Amanda also wants to go on a cruise, though isn’t allowed to leave the country due to insurance so a ‘three-dayer’ if she is feeling up to it in the future will have to do.
‘I also just want to go to like Sushi Train without a budget. Just grab what looks good instead of mentally adding up every plate, too scared to spend $30 on sushi.’
Amanda’s condition has remained stable, with her main symptoms like fatigue and nausea and breathlessness coming from treatment.
But things could go down hill at anytime and when they do ‘it will be fast’.
‘Doctors say I will start having seizures and that will be a sign that everything else is going to get worse,’ she said.
She will then likely go blind in her left eye and eventually her vital organs will start shutting down.
‘They don’t know how long the cancer has been there or when that will start to 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 still got cancer.’