Emma Capell, 52, Church Point, NSW, shares her true life story;
Sobbing, I sat glued to the TV.
I was watching The Woman With No Face, a documentary about young mum Tambu Makinzi fighting for her life.
She had a 2kg tumour, called a chondrosarcoma, protruding from her forehead.
Just like Tambu, I had a chondrosarcoma.
My tumour is going to grow out of my face like that and I’m going to die, I thought in horror. I’ll look grotesque.
Three months earlier, I’d woken one morning unable to hear with my left ear.
“Probably just a wax build-up,” my doctor said.
She suggested antiobiotics and wax drops, but they didn’t help.
A busy single mum to Katrina, then 23, Lucia, 21, and Elliot, 19, I hadn’t even had a cold since they were little, so it was odd I couldn’t shake this.
Weeks later I saw a specialist who ordered an MRI.
Looking at the image, there was a white cloud under my ear, but the specialist said it was normal.
A few days later, I woke up with double vision.
“Now I’m partially deaf and cross-eyed. I’ll do well at online dating,” I joked.
My doctor was concerned now though.
She sent me to an ophthalmologist for tests, who then sent me straight to emergency.
After a week of testing, they determined there was a 2cm tumour in the base of my skull behind my right eye.
The treatment was difficult.
“It’s very rare and we can’t help you here,” the doctor said.
“What happens now?” I gasped.
He referred me to a specialist skull-based neurosurgeon who’d see if the tumour could be removed.
I was devastated, fearing my time could be limited.
A social worker turned up and I cried solidly for 90 minutes.
“I’m going to die,” I sobbed.
I told the kids, but they went into denial.
“You’ll be okay,” they all insisted.
I didn’t think the news could get any worse, but after more examinations and a biopsy, it did.
“I’m so sorry, but we can’t cut out your tumour,” the specialist said.
Because of its position, it was inoperable. Removing it would be too dangerous.
My only option was radiation to try and slow its growth.
Again, because of the location, it was unsafe to have more than one course.
The radiation would cause some damage to my brain.
It seemed I was doomed, whatever I did.
Me with Lucia.
Researching my condition back home, I came across The Woman With No Face documentary.
Watching it left me shaking in shock.
This disease was so cruel. There was a chance it could result in me being disfigured as my tumour grew outwards from my skull.
It was awful.
Desperate for hope, I began talking to people with the same tumour as me all around the world through Facebook hoping someone, somewhere, could help.
They all kept mentioning something called proton therapy, but I’d never heard of it. None of my doctors had ever mentioned it.
What’s this proton therapy? I asked Lauren, a survivor in Florida.
She explained it was a powerful beam of radiation that could be focused at a precise level in the tissue, so it caused less damage than traditional radiotherapy.
It sounded like just what I needed, so I asked my oncologist at my next appointment.
“It’s not available in Australia. You have to go overseas and it’s very expensive,” he said dismissively.
But surely that’s my decision, I thought. I’d sell my home if I had to.
Then another Aussie member of the Facebook support group said that wasn’t necessary.
“There’s a special Government fund you can apply for which could pay for treatment,” she said.
It was called the Medical Treatment Overseas Program, run by the Department of Health and Ageing.
Me undergoing proton therapy.
They confirmed if my specialist put in an application for proton therapy they’d consider it.
Meanwhile, I decided to find out more.
Some of my new Facebook friends had been treated by a doctor in the US.
He’d treated over 600 patients with the same condition as me.
I sent him my records and he kindly called me.
“This chondrosarcoma is slow-growing and very controllable, if not curable,” he reassured me.
I burst into tears – it was the first time I’d had hope.
I’m not going to die! I thought. But then he had some bad news.
“You won’t be sent here for treatment from Australia. We’re too expensive,” he said.
It would cost nearly $300,000!
The good news was other centres around the world could do the treatment for much less and I sent the quotes to the Government fund.
They approved treatment at the Maryland Proton Treatment Centre in Baltimore, which would cost considerably less, and included the therapy and flights and accommodation for me and Lucia, who was going as my carer.
When we flew out, I was full of hope.
But proton therapy is still a form of radiation and I suffered intense nausea.
“I feel awful,” I sighed to Lucia.
Still, I never lost sight of the fact that just a few months earlier, I’d been fearing for my life.
I feel like I’ve been given a second chance.
The treatment lasted seven weeks.
Afterwards, my doctors said they were pleased with how it went.
I had a 95 per cent chance of surviving the next 10 to 15 years.
That sounded like pretty good odds and I spoke to lots of people who’d had the treatment and were still going strong after 17 years.
With a new lease on life, I celebrated with a world tour visiting old friends and some I’d met through the Facebook support group.
“My tumour has made me realise how short life is,” I told the kids.
I spent more than three months travelling to 11 different countries and put on 13kg along the way!
I’m now writing a book about my experience to spread the word about proton therapy.
Thanks to people like Sue Bleasel, a campaigner who has spent 17 years fighting, the therapy may soon be available in Australia.
I hope so because this would make life so much easier for people with these sorts of tumours.
If it wasn’t for my online support group on Facebook, I don’t know what I would have done.
Instead, I’ll spend my days living life to the fullest.
To follow Emma’s journey visit www.emmacapell.com.au
