Elly Mayday is a model with a message.

The 28-year-old body positive activist was diagnosed with ovarian cancer in 2013 -- but instead of backing down, she said she used the diagnosis as “fuel to talk about the things I wanted to talk about, the importance of appreciating the skin you’re in and being comfortable with who you are.”

She said before the diagnosis, she was working as a flight attendant and modeling on the side in Vancouver. She started posting her photos on Instagram and created a YouTube page dedicated to discussing her own experiences, from going on photoshoots to beauty products she enjoyed.

“I was modeling lingerie, and, ya, I was a size 14, and people started to take notice,” she said.

“After I became confident in my skin and embraced the size I was...I just started to love myself the way I was, so I started to spread that mentality through my work."

Five weeks after her first YouTube video was posted in August 2013, Mayday announced that she had undergone surgery for a biopsy. The result was ovarian cancer.

At that point, she had already been going to doctors for about three years, she said, complaining of lower back pain. They couldn’t figure out what was wrong and she was dismissed.

She was even told the pain was due to the fact that she was overweight. But she knew her weight was not the issue. She quit her job as a flight attendant, she said, so she would be taken seriously.

“I thought maybe they’ll take more of a notice (and say), ‘If a 25-year-old girl, who otherwise tells me she’s OK...she’s quit work.’ And I thought maybe it would push me harder, too, because I swayed away from it. I thought, ‘Oh, (doctors) know better than me. They see thousands of people a year,’” she said.

Mayday said it was because of her confidence and persistence that she was able to finally get results.

“If a doctor doesn’t give you the answers that help you or make you feel better,” she said, “go to another one and keep on knocking down doors -- because until we have a way to detect it early you are your own soldier.”

There is no reliable screening test for ovarian cancer and it’s often misdiagnosed because the symptoms -- including the urgent need to urinate and difficulty eating or feeling full quickly -- are linked to other diseases. Survivors and advocates also said there hasn’t been enough funding for new research and for bringing better treatments to Canada that are currently available in the United States. Five women die from the disease every day across the country, according to Ovarian Cancer Canada.

“No one is talking about it. It doesn’t sound like a big number. But when you’re blindsided by ovarian cancer, it’s a tough hit to take,” Mayday said.

Mayday will be in Toronto on March 2 for the Lady Ball, a fundraising event organized by Ovarian Cancer Canada. She has been working with the charity since 2014, speaking at schools about body positive mentality and about living with cancer.

“I was misdiagnosed for so long that I really thought, ‘I can give a voice, I can give an image to these younger girls who are maybe in the exact same position as me,” she said.


Building the community

Fellow cancer survivor and advocate Donna Pepin said she will be joining Mayday in the Lady Ball fashion show.

Pepin was diagnosed in 2006. After various treatments, she received a successful surgery and was cancer-free for nine years. However, in 2016, the cancer had returned.

“I would like to see funding for research in how to monitor ovarian cancer survivors for recurrence, because recurrence rates are 85 per cent. I’m proof of that and Elly Mayday is proof of that,” said Pepin.

Around six weeks ago, Mayday wrote in an Instagram post that her cancer had come back for the second time.

“If they had listened to me the first time, maybe I’d only have had to have one of my ovaries out. But instead I’m going through multiple operations, chemo and everything,” Mayday said, about getting diagnosed after years of doctor visits.

“But I think I’m like the spokesmodel for this for a reason. I have to go through it all, the worst of the situations, and that’s just what I’m taking from this.”

Pepin said that because ovarian cancer mortality rates are “brutal,” it is often “overlooked and understudied.”

“It’s a tragically aggressive tumor and there just aren’t a lot of advocates or people or survivors who would otherwise stand up and advocate for the disease and get the support that’s needed,” she said.

The Lady Ball is intended to do just that, according to its CEO Elisabeth Baugh.

Media mogul Arlene Dickinson, businessman David Chilton and Canadian singer Dean Brody will all be attending to support the cause.

“Ovarian cancer affects 2,800 women in Canada every year and, sadly, because most of those women will be diagnosed late, over half of them won’t survive five years. We haven’t had a community of survivors to advocate for the disease. It’s taken a while to build that community,” said Baugh.

A petition with more than 12,000 signatures was presented to the federal government for more funding last year.

“We’re asking (them) to invest $10 million in research and we’re asking for women to have access to new treatments that become available as soon as possible,” she said.

“We’re waiting for their reply... This will be an ongoing process. We know that this kind of change doesn’t happen overnight.”

“It’s all about the voices”

The Lady Ball -- a night of comedy acts, cocktails and music -- is a fundraising event, but Pepin said it’s also a reminder that more needs to be done.

“Part of the (Lady Ball) fashion show is always for Ovarian Cancer Canada to have models walking the runway that are survivors of the disease. There were a number of us last year, and unfortunately, I think it’s three or four of the women won’t be there because they’re in recurrence and having treatments,” she said.

“It’s staggering. All of us? Seriously? Holy s---. I just feel like this sense of urgency like something really has to be done.”

In her lifetime, Pepin said she’d like to see the creation of a screening test and “better surgical options in Canada and drugs that are used in the United States” that aren’t yet available here.

“We have mammograms. We have Pap smears. We have all of these things, but we have nothing for ovarian cancer,” she said.

Because there is no specific test for the disease, women with its signs and symptoms should ask their doctor for a complete pelvic exam, transvaginal or pelvic ultrasound or a CA-125 blood test, according to Ovarian Cancer Canada.

“The only definitive way to determine if a patient has ovarian cancer,” according to their website, “is through a biopsy.”

“We really need people to advocate,” Baugh said.

“It’s all about the voices and getting loud about this disease, joining forces with other Canadians who are part of that action plan. Younger women need to know so they can make health decisions.”

Spreading the (self)love

Mayday said part of the reason she wants to empower other women is because of her own experience dealing with her diagnosis.

“Young girls are being diagnosed so much younger now. We have to be more aware,” Mayday said.

“When I got diagnosed, in a (YouTube) video I said my page is going to change. It’s not going to be all positive, all the time. I’m going to have really stressful, terrible times.”

She relied on her online community to pick her up, she said. And her followers liked that she was highlighting issues that weren’t being talked about.

“As much as people say I’ve inspired them, they’ve actually helped me a lot. Having that page to have that voice has been a gift to me,” she said.

The modelling agencies and photographers she worked with -- and continues to work with -- embraced her cancer, she said. Instead of shying away from showing she was, she used social media to get the word out that being bald, or having scars from surgery, didn’t take away from her beauty.

“I incorporate the body positive issue because I think me being strong in my own skin helped me get the diagnosis -- and being firm with the doctors,” she said.

“I think trusting your gut is the most important thing that I understood. It proved me right. I had a lot of people tell me, ‘What do you want us to do for you?’ and ‘You’re too young to have any major problems.’”

After Mayday comes to Toronto for the Lady Ball, she said she’s going to travel around Canada and speak to students at high schools.

“I’m planning on...saying the importance of not only of trusting your instincts and knowing your body, but loving yourself enough to find out what’s wrong.”