Celebrating the Ovarian Cancer Community

In the past few years I’ve noticed a growing amount of energy and a stronger sense of purpose within the Canadian ovarian cancer community. Not that we haven’t always been a small but passionate group, committed to fighting this disease and the devastation that it inflicts on women and their families. However, I’ve noticed a gradual shift from when I was first treated six or seven years ago. When I was initially diagnosed with ovarian cancer in November 2011, I can remember that Ovarian Cancer Canada’s primary focus seemed to be on awareness and prevention as well as on support and better resources for women already fighting the disease. But now they have adjusted their mandate to involve more advocacy at the level of the federal government. Pushing for additional research and better treatment options for women with ovarian cancer has become their most important objective.

An estimated 2,800 Canadian women are diagnosed with ovarian cancer each year, an estimated 1,800 die from the disease. There is no question that ovarian cancer research is significantly underfunded and that more has to be done to develop better treatments. Scientific progress in the field has been agonizingly slow, more than half of women who are diagnosed with ovarian cancer still die within five years. Like many who have battled the disease, I dream that perhaps one day soon there will be a test that can detect ovarian cancer in its early stages. The majority of women are currently diagnosed after the cancer has spread beyond their reproductive system. Meanwhile, additional research in the area of immunotherapy might give renewed hope to many of us living with ovarian cancer or facing a recurrence.

 

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It was a major triumph for the Canadian ovarian cancer community when the latest federal budget allocated 10 million dollars to ovarian cancer research. Over the past four years I’ve cheered on the efforts of Ovarian Cancer Canada as they relentlessly lobbied the federal government to invest the much needed 10 million. Numerous meetings with survivors on Parliament Hill helped persuade key politicians that better funding is needed to save thousands of lives. “Today, the Government of Canada has taken steps to invest in needed research which will translate into scientific progress against this disease. This announcement makes an important commitment to women’s health and equity in health care – and it is a milestone made possible because of you,” wrote Ovarian Cancer Canada CEO, Elisabeth Baugh.

While it’s true that ovarian cancer is most often diagnosed in women in their fifties or sixties, it’s a myth to believe that it is only an “old woman’s” disease. I was 46 years old when I found out that I had ovarian cancer. I’m always shocked when I learn about women much younger than I was receiving a similar diagnosis, my heart aches as I witness a life-threatening disease try to shatter their hopes and dreams. It hurts me to see the impact that ovarian cancer can have on their relationships, careers and future ability to have children. I have deep admiration for younger ovarian cancer patients, they often possess a wisdom and maturity that seems beyond their tender years.

 

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Ashley Shandrel Luther  (Elly Mayday)
April 15, 1988 — March 1, 2019

I recently mourned when the community lost a powerful advocate and inspirational leader. The internationally renowned model Elly Mayday passed away in March. Elly Mayday’s given name was Ashley Shandrel Luther. She was born on April 15, 1988 and grew up in Aylesbury, Saskatchewan. The body positive model and activist was first diagnosed with ovarian cancer when she was just 25. Elly was diagnosed with Stage 3 ovarian cancer around the same time that she had two modelling contracts offered to her. But instead of stepping out of the light, she welcomed it. “I figured that maybe I could help someone going through something similar, while continuing on with my own dreams. I mean, I was going through it either way, why not make it as positive as possible?” she once said. Elly vigorously pursued modeling while bravely sharing intimate details about her cancer treatments with her huge number of fans and social media followers. Her legacy will continue to be an inspiration to many.

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