Emma Betts is dying.
She’s sitting on the couch with her dog Ralph, talking to us from her Brisbane home. The cancer she first discovered when she was 21 has stopped responding to treatment and there are no treatments left. She is 25.
She hates the word ‘fighter’ and has forbidden anyone to use the phrase ‘lost her battle with cancer’ at her funeral.
“It gives you a sense of failure and I’ve tried my hardest. I’m not giving up, but it doesn’t matter how much I fight, it’s going to get me,” she told Mamamia‘s Mia Freedman, in this week’s incredibly moving episode of No Filter.
Emma was volunteering in East Timor when she found the mole on her shoulder. “A stranger pointed it out, and said I should get it checked,” she recalled. She came back to Australia, where a biopsy was performed and found it was something similar to melanoma but not quite. Emma was told she needed to return to Brisbane from East Timor every three months for check-ups.
Emma dreamed of working in international aide. She’d been studying international relations at university and she always wanted a family.
“I knew I’d come back to Australia eventually. I was going to be one of the first of my friendship group to have kids,” she said. “The mole didn’t really scare me, I knew what I had to do. I just had to be careful.”
She was careful. She returned to Australia every three months. She did self-checks frequently. When she found a lump under her arm, she hoped it was due to the Dengue fever she’d had a few weeks before.
The doctors did a biopsy to see if it the lump was cancerous – this would mean stage three cancer, and a high risk of being diagnosed with terminal cancer within five years.
“It quickly turned from there being a 70 per cent change of being terminal in five years, to me being 22 with terminal cancer," she said.
There was no such thing as five years.
"My melanoma has been bad luck,” she said, shrugging. What can you do?
Emma has lived with stage four cancer for three years, much longer than anyone predicted - she was given three months at age 22. She has tried different drugs, been involved in clinical trials. The treatments were working for a time, and she discharged herself from palliative care. Four months ago Emma started a phase one clinical trial and it hasn’t worked. The cancer has spread through her body. The “trouble tumour” in her liver is now 14 centimetres in diameter. It’s pushing on her spine and partially blocking the stomach. They cannot operate.
"I had eight litres of fluid drained from my body the other day. It looked like I was nine months pregnant,” Emma said, before pausing.
“The people I’ve known with cancer who’ve died, they had fluid build up in the weeks before they passed. I can’t help but think ‘does this mean the end for me?'”
Her voice broke and the tears came. Her friend, Rebecca Sparrow, sitting beside her during the interview for support, reached for her hand and squeezed it. It's hard to find words of consolation for someone who has found herself at the limits of what medicine can do.
Emma says it would be “amazing” to live for six more months, to maybe even reach her 26th birthday.
Everyone nods silently, supportively in agreement. It's funny how the definition of 'amazing' can be so subjective.
It was never meant to be like this.
Jason Carrasco's cancer diagnosis came with his first taste of adult freedom at age 18. He had returned to his Wollongong home from Schoolies and was awaiting his HSC results and hoping to get into commerce.
He was diagnosed with testicular cancer.
"I had a really bad back ache,” he told Mamamia. “No one could tell me what it was. I tried acupuncture, went to the chiropractor, saw countless doctors. I had a CT scan of my pelvis. It showed no tumour. Then, three weeks later, it showed a 15-centimetre tumour. That’s how fast it was growing.”
Jason got angry. He says “it was screwed up” and that he went “crazy”.
"It was the worst thing, there was so much pressure," he said. "Trying to fill a sperm bank, I couldn't accept it. I was so scared, I wanted to claw my face off. I literally went crazy." Jason needed to give sperm before undergoing treatment because the chemotherapy would affect his fertility.
Before his diagnosis, Jason knew nothing about cancer. "I knew a girl, Cassie, we used to go to watch the Illawarra Hawks basketball games together. I saw her at a party once, and I'd heard she had brain cancer. I asked her about it but I didn't really know what a tumour was," Jason said. "When I was diagnosed, Cassie came to see me. We were the same age. She saved my life."
Cassie Nascimento, who was diagnosed at 16, was in remission when Jason underwent a major operation – one of several – following multiple rounds of chemotherapy. It took weeks to recover, but the operation was successful and Jason was cancer-free. Two weeks after he received that news, Cassie’s MRI showed two tumours, fast growing, taking over her brain. She died less than a year later.
Jason is currently three-years clear. He’s 23 and he’s working in Sydney’s CBD. He complains about the commute from Wollongong, and he often gets stopped on the street – at the train station, or while shopping – by people who recognise him.
“Cassie and I were going to write a book,” he said. “Cassie wrote all her ideas down and she knew exactly what she wanted to say. We wanted to do it to show other young cancer patients that they could become friends like us.” Cassie didn’t live long enough to do it, but Jason did. By Your Side was published eight months ago.
Now, Jason receives messages from other young people who are sick and scared and trying to cope, and he’s regularly stopped on the street by strangers. “It’s really, really nice. To know how Cassie’s story is helping people,” he said.
Each year, around 1,000 Australians aged 15 to 25 will be diagnosed with cancer, according to research from the national support organisation CanTeen. The most common cancers in young people are skin cancer; blood cancers (leukaemia and lymphomas); testicular cancer; and thyroid cancer. Of those 1,000 diagnosed each year, 150 will die.
"Nothing prepares you for a cancer diagnosis, especially when you're young," Dr Pandora Patterson, CanTeen's General Manager of Research and Youth Cancer Services told Mamamia.
"Young people are still developing coping skills. And, all of a sudden, they're not only coping with all the rapid changes and development that happens in adolescence and young adulthood, but they're dealing with cancer, too."
Dealing with cancer, facing your own mortality, grabbing hold of and considering the worst possible scenarios. Doing all this while your peers are jumping into their future, wondering what their lives will look like. Maybe daydreaming about a career, or travel, or having children. Coming back from Schoolies and enjoying the legal drinking age.
Kathryn Woodward was in grade 10 when she woke up one morning in her family’s Gold Coast home with a swollen neck. She went to the doctors and they ran tests, thinking she might have contracted some type of tropical disease. They admitted her to the infectious unit in the hospital.
She began to get other symptoms — night sweats, itchy skin. "Google the symptoms of Hodgkin's Lymphoma, and I had them," Kathryn said.
I asked her if she did that; Google the symptoms and expect the worst. "No, never," she said. "I never thought about it. I had my whole life organised. I was in year 10, I had just done my exams. I was thinking about senior school, I never expected to get cancer.”
She was 15 when she received the diagnosis.
"I didn't cry for two months after I was diagnosed," she said. "I was just thinking about what I had to do, and the next steps for getting better. Everyone around me was falling apart; it was almost like I had to stay strong for everyone else.”
This moment of diagnosis is different for every patient.
Jason, for example, got angry and “really really struggled”.
Emma went numb. She doesn’t remember the conversation where she was told she had stage four cancer.
"I just remember being told I had to go see the oncologist." Now, after every appointment, and every cascading piece of bad news, she and her mum and dad will cry, then go eat sushi. "It's strange, but we do it every time" she laughs. Yes, she laughs. Sometimes you have to, she says. She also frequently makes what she calls "wildly inappropriate jokes", like teasing her husband about how much more closet space he'll have in their small apartment after she's gone. She says her black humour horrifies her family and her husband, but she does it anyway. She thinks it's just her way of processing reality, which includes a future life for her loved ones without her in it.
Also, she just needs to laugh sometimes as a way to cope with the bleakness and tragedy of her situation.
Cassie Nascimento's mother, Gloria, wants everyone to know how strong her daughter was throughout her illness; that Cassie was “worried about everyone else”.
“I wanted to run away and come back when she was better," Gloria Nascimento told Mamamia. "I ended up in hospital myself. A doctor told me, 'If anything happens to your daughter, she's going to die without you by her side’. So I pulled myself together and I got my strength back. I got it from Cassie, she was always so strong." Gloria was named Barnardos Mother of the Year in 2014 for helping teenage cancer patients after Cassie died.
Then, there is the treatment; the hope and the setbacks and the sheer physical trauma that chemotherapy and radiation therapy involves.
"It was shit," Jason told me. "There is no other way I can answer that question. I went through four rounds of chemo. It was really, really tough. I had four rounds and two operations, one bigger than the other before I was cleared. Before the big operation, I can't tell you how scared I was and how much of an influence Cassie had on me. After talking to her I was more calm, thinking 'even if I die, I still met this amazing girl'. Because I didn't know if I was going to wake up or not."
There is vomiting and weight loss and nausea.
“I was 47 kilograms after radiation therapy, from around 62kg," Kathryn recalled. "I was lucky if I could hold down orange juice for breakfast. No one told me you shouldn't shave under your arms during radiation. And I ended up with these huge sores, because the radiation burnt my skin.”
Kathryn, now a 19-year old pre-medicine student, underwent four rounds of chemotherapy, four weeks of radiation therapy and a bone marrow transplant.
The transplant involved six weeks in hospital when she was 16. High, high doses of chemotherapy drugs were administered, designed to kill off her immune system entirely. Once her white-blood cell count was impossibly low, she was given new bone marrow, donated by one of her brothers. Her immune system gradually recovered, and she’s been in remission for two years now.
While cancer is an incredibly steep mountain to climb for anyone, there are certain considerations particular to young people who are diagnosed.
Fertility is a big one. Chemotherapy and radiation therapy can irreversibly damage a female's ovaries and eggs, and a male's sperm count. As well as this, certain cancers such as brain tumours and Hodgkin's Lymphoma can disrupt the division of healthy reproductive cells. Research out of Western Australia has also shown pregnant women who've lived through young adult cancer are at an increased risk of threatened abortion, gestational diabetes, premature birthing and post-partum haemorrhage and hospitalisation.
Emma wanted to know if she should freeze her eggs. “I was told there’s no point,” she remembers haltingly. It was too late. And in that devastating moment - one of so many - the possibility of ever becoming a mother was extinguished. “I really struggled watching my sister have her second baby a year ago. That was meant to be my job, to have babies first. Ralph helps." The dog she and her husband adopted soon after they were married, a wedding that was brought forward after her diagnosis. "Having him has made it better.”
For Kathryn, she decided to have an operation to preserve a sample of ovarian tissue after the first round of chemo did not work. “It was not something I thought about much at the time, but I tell you, being 16 and sitting in a gynaecologist between your mum and your dad with books on family planning and IVF around you is not fun,” she said.
It’s a tough irony, because Kathryn is now 19 with premature ovarian failure. The bone marrow transplant that killed her immune system and her cancer also killed her ovaries.
“The fertility aspect didn’t bother me so much at the time, but as I’m getting older I’m starting to think about it more," she said. "They’re also hesitant to re-insert the preserved tissue because it was damaged by the first round of chemo."
There is the issue of body image. Being a teenager and in your early 20s can already throw up all sorts of natural insecurities, but these young adults are way beyond acne and body changes and pubic hair. They’re dealing with hair loss; the threat of scarring or losing a limb; dramatic weight loss or gain; the possibility of sexual dysfunction; and other conditions that come with receiving treatment and having such a compromised immune system.
“Going to school with no hair was tough,” Kathryn said. “I do remember one instance, when we were sitting at lunch, and this girl was adamant that she didn’t want to cut her hair. ‘No’, she said, ‘I won't do it’. I felt like saying, ‘I have no hair right now, and it’s not a big deal'."
Emma says it’s more about what your appearance does to your own sense of hope, as opposed to what others think of you. After four years of looking outwardly 'normal' and healthy during her cancer treatment, it's only in the past few weeks that she has begun to look unwell. "It’s really hard to look mirror every day and see so clearly I am sick," she says.
Finally there are the friendships and relationships that, for every other teen and adolescent, are so potent and filled with growing and learning and carving out a place in the world. When you have cancer, this changes. Your carefree youth goes missing. So can your innocence, your confidence and oftentimes, your optimism.
Some relationships are accelerated. Emma met Serge when she came back to Brisbane for one of her check-ups. When she came back for the biopsy on the lump under her arm, she was more exited to see him than she was worried about having cancer. Their first date was in a hospital ward.
Now, they’re married. “It was a conversation in the shower. Me saying, ‘You can go’. Him saying, ‘Let's get married’", Emma said. “We bought a dog. Bought a unit. I wanted normality.”
Some relationships are life-saving. "I hated people treating me differently," Jason said. "Cassie was someone who understood. I loved her more than anything. When she got sick, I didn't know what to do, I felt so lost, I wanted to help her like she helped me."
Some relationships don’t last.
"I thought he was my best friend. He was first to the hospital with me, but he disappeared. He faded away," Jason said. "People don’t know how to talk about it, and that's fair enough. But it’s not about understanding completely. When you're in that position, you just want to know they're thinking about you. That’s all you want."
Throughout our conversation, Jason made things sound so simple. So normal. "Don’t even write about me,” he told me. “Write about Cassie. She’s the inspiration.”
But this, more than anything, speaks to the strength – there’s no better word for it – inside young people who’ve lived through, or who won’t live through, cancer.
How they are so humble, so balanced, so craving of normality in the face of something so scary and dark and 'all-I-want-is-to-look-away'.
Jason didn't want me to write about him.
Cassie never spoke about death. “We never talked about it. She never gave up hope," Gloria said.
Emma is tired of being told to “live every day like it’s your last”. It’s exhausting, she says.
She wants Daryl Braithwaite’s Horses to be played at her funeral because “it’s the song that always gets me and my friends up and dancing. Once, my friend threw her undies at him on stage.” She laughs.
Oh, and she wants a party. “When I die it’s going to be Christmas. It doesn’t matter what time of the year it is. I am throwing a party for all my family and friends to be together and to say goodbye. My favourite time of the year is Christmas, so that’s what the party will be.”
A party to mark the death of a 25-year-old. Followed by her funeral, which will be conducted by the same celebrant she had at her wedding just a few short years ago. She's already begun to plan it.
Cancer is not meant for the young.
Buying a puppy and a home with the person you love, hoping for six months longer.
Ovarian failure at 16 and determined to go to a Taylor Swift concert. Going onto study medicine to help other cancer patients because you "know what it feels like".
Surviving cancer and writing a book about a person you loved who has died, because you “have never felt so passionately about anything”.
These young people laugh. They look forward. They love. They make decisions that are different to every other young adult and adolescent because they have to.
But they still crave connection, realness, lightness, to be remembered for something other than being sick. To be remembered for who they really are.
Most of all, they want everyone else - all of us - to stop looking away. Can't you see? They still have the rest of their lives in front of them.
Emma and Serge need help making her remaining time as comfortable as possible. To donate, go to My Cause: https://www.mycause.com.au/page/144596/love-for-emma.
If you're a young person, dealing with cancer, you can find support at CanTeen: https://www.canteen.org.au/.
You can purchase a copy of By your side by Jason Carrasco here.