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Facing a cancer diagnosis as a care partner

Our story

Nelia, Laura and Janet know all too well the devastating effects a cancer diagnosis can have on a family. According to the Canadian Cancer Society, cancer is the leading cause of death in Canada and is responsible for 30% of all deaths. An estimated 220,400 new cases of cancer and 82,100 deaths from cancer occurred in Canada in 2019. About 1 in 2 Canadians will develop cancer in their lifetimes and 1 in 4 will die of the disease.

Nelia’s husband, Mark, was diagnosed with Chronic Lymphocytic Leukemia (CLL) in December 2010. “The first year was an absolute nightmare.  My fear of losing my husband and what his CLL would do to the dynamic of our family took some time to adjust for all of us. With a cancer diagnosis there is an aspect of denial, and in addition it also comes with expectations, for me it was the role of caregiver. I personally prefer the term care partner and I was automatically assumed that I would occupy that role. I was not a natural care partner, I had to learn to become one, it was not part of who I was back then. As time has gone on the role of care partner is one, I hold with honour and carry with pride.”

Laura’s mother was diagnosed with Small Cell Lung Cancer (SCLC) in April 2017. This diagnosis has taught her a valuable lesson: “My mom’s diagnosis really made life much more vibrant and shorter for me in a way. I feel that everything that you want to change about yourself and everything you want to do in life, you should do now, because tomorrow is given to no one. And a lot of times, people who have cancer, especially cancers with short life expectancies feel that they have a sword over their heads all the time and they’re afraid any day could be my last. But really, we all have that. If you live life a little bit like that, that today is today and that’s all you have, you make different choices, better choices, you care less about things that don’t matter and ironically the more you are sad or you are suffering yourself, the more open you are to the needs of others. You have more space and more energy for others, than when you are busy thinking about yourself.”

Janet’s husband, Adam, was diagnosed with Glioblastoma Multiforme (GBM) in September 2016 when he was only 47 years old.

“When he shared the awful news with me, I was devastated, scared and angry," recalls Janet.  She thought, "How could he have a terminal disease when he has always been so healthy?"  

Adam and Janet approached all aspects of their lives as one unit. "I said, we know what this is now let's build the best team around us to fight it."  

"Going from being a wife and mother to adding caregiver to a cancer patient overnight was staggering," says Janet.  "It wasn't a question of how I was going to do it, but who would be our allies along the way. Aside from our incredible team at St. Michael's Hospital for the surgery and Sunnybrook for treatments, we only had the strongest and most positive people around us for support.  That required some filtering, but it was necessary for us to maintain focus and positivity."  

After a valiant fight of over three and a half years, Adam lost his battle to glioblastoma in February 2020.  

"What this experience has taught us is to treasure every day, the importance of curating the circle around us, and to think about our legacy and what we are leaving behind in this world."

Adam's diagnosis inspired Janet to create the website RESILIENT PEOPLE, where she interviews EXTRAordinary people who inspire others with their resilience. They have overcome major challenges, bounced back and now help inspire others to be resilient too.  

"By speaking with so many people around the world, it has reminded me that everyone goes through something difficult but it's what you do with that experience that makes the difference."