Brittany Kremers often wishes she could've picked which cancer she got. While the young Christchurch woman saw others battling "hidden" illnesses, she hasn't been able to conceal hers, and has spent most of her life dealing with stares and rude comments from strangers.
Diagnosed with a devastating facial tumour – stage four alveolar rhabdomyosarcoma – aged eight, Brittany had her jaw and skull base removed, along with the tumour, in a 13-hour operation that left her disfigured and unable to see or hear on her right side.
It began a tortuous process of restorative surgeries that lasted years and involved hundreds of hospital admissions. She would tell her parents, Dawn, 57, and Marcel, 55, "I wish I had got leukemia instead, so I wouldn't have a constant external reminder every time I looked in the mirror."
Explains Brittany, who turns 26 next month, "My best friend had cancer in his bladder and the only thing that affects him now is he needs to use the bathroom quite often. Whereas, I can't breathe normally, I can't eat normally. I'm stuck sounding different and have a crooked smile because of my nerves that have been buggered over the years. I'm stuck with an eyelid that doesn't close and makes my eye so irritable. I'm stuck looking this way and it gets me really down.
"Even hairdressers get freaked out. They'll be cutting my hair, see the scars and stop. I'll tell them, 'It's all numb, just keep going.'"
As Brittany and her mother Dawn chat to the Weekly over Zoom, the cancer survivor turns away to drink her coffee out of a 60ml syringe.
In recent months, she made news headlines after being denied life-changing facial reconstruction surgery by the then Canterbury District Health Board.
It had followed 14 months of enduring an external metal distraction to realign her jaw in preparation for having a prosthetic jaw fitted. The prosthetic is vital to enable Brittany to eat a normal diet instead of just soft food.
But in a major shock, her doctors told her in December there was no funding available through the DHB for the operation. A family friend set up a Givealittle page, with Kiwis generously pledging more than $100,000 in the first week. They are still well short of the $250,000 it will cost for the surgery but are hoping a treatment injury claim filed through ACC will also help. Brittany has met with a surgeon, Dr Muammar Abu-Serriah, from Auckland Head & Neck Specialists, who is confident his team can restore some of Brittany's features.
"We don't have a firm date yet, but if we had the money, I'd be up there for surgery tomorrow."
Dawn describes her long-suffering daughter as the bravest person she knows.
"Life hasn't been kind but she's got through as best she can and hasn't given up," she says, wiping away tears.
"Well, I would not be here today without Mum," adds Brittany. "She's my rock. We started this journey 17 years ago and I feel I've been robbed of my teenage years. My education didn't happen – I had health schooling. I missed out on going to my formal, sneaking out to go to parties and all those stupid things teens do."
It hasn't stopped her finding love though. Brittany lights up talking about boyfriend Liam Thorpe, 27, after the couple met in a local pub.
"He came up to me and said, 'You look different, what's wrong with you?' she recalls. "I appreciated that he was straight-up with me. It does my head in when people just stare and whisper. I'd rather they ask me my story.
"Liam is so supportive and accepts me for who I am. We also connected because his mum had cancer too but sadly passed away."
Dawn, a Greymouth-based midwife, adds, "As a parent, that's one of the things I used to mourn – wondering if Brittany would ever meet anyone. But she's found Liam and they love each other."
Brittany's dream is to become a youth worker and help others struggling through similar health situations. She was previously chair of the CDHB's Youth Advisory Council and has been a leader in CanTeen, a not-for-profit that provides support for young people impacted by cancer.
"I can relate to them," Brittany tells. "I know what survivor guilt is. From my experience, I can tell them it's not the end of the world. I know this is so tough and they will get through it.
"I've been through hell and back, but I wouldn't take it back because it's made me who I am and I like who I am. People have walked into poles staring at me, but I'll stand up for myself now and ask them to stop.
"My hope is the surgery will give me some normality back. I'm really looking forward to eating a piece of steak and corn on the cob again. It's the little things that others take for granted."
To donate, visit givealittle.co.nz/cause/help-brittany-get-surgery
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