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(Emily Flake for The Globe and Mail)
(Emily Flake for The Globe and Mail)

Adventures in Lymphomaland: Our readers share their stories about life with cancer Add to ...

When I started throwing the shocking, gory, hilarious, scary details of my cancer diagnosis and treatment into the public realm, an amazing thing happened: Friends, acquaintances, even strangers at the corner store all opened up, sharing their stories of courage, challenge, loss, survival, and all the crap they’d been through.

While there remains a lot of silence around cancer – due to fear of repercussions and judgment in the workplace, at school, and even within our own families – people want to share their stories. When The Globe and Mail called on readers to impart their own stories of cancer, more than 80 responses arrived. I imagine that’s only a fraction of the number that considered writing in.

A startling thread of tenacity, positivity, survival instinct and the shifting of old patterns runs through these tales. People’s ability to rise to the challenge of cancer is one of the most surprising themes that emerged. Our fears, it turns out, can ultimately be overcome by our ability to cope (and by our lack of choice in the matter). But while our own resilience is surprisingly reliable, the capacity of others to hang in and provide support comes as another humbling surprise.

One other thing that jumped out: the loneliness and isolation inherent in getting cancer as a young adult – an added layer of trauma that most cancer patients do not have to face, and one so out of the ordinary that friends and even family often don’t know how to step in – and so don’t.

For those who have children, meanwhile, there is one particularly perverse layer of agony: Dealing with our own illness is one thing; thinking about the genetic markers we may be passing on to our kids is a different kind of unimaginable pain.

Cancer is an epidemic. Shining a light is the best thing we can do. We are the collection of our stories. People need to hear them, and be changed by them. Here are some of the tales our readers shared.

Susie Ehrhardt, 28, Calgary

I was surprised that people dropped out of my life the moment I was diagnosed, while others jumped in just when I needed someone. Both groups had people I never predicted would act that way.

Michelle Connolly, 43, Toronto

My daughter was diagnosed at age 6. I am surprised that I feel so damaged. I’m no longer an optimist. I say “I love you” to each of my three children a lot more, and allow backwards dinners (dessert first!) if they ask.

Aimee Patterson, 33, Winnipeg

I expected pain and discomfort during treatment. And I expected fatigue after treatment. But I didn’t expect the amount of pain I’d experience during my treatment, and how severe the level of pain would be. I was shocked by the time treatment took (well over a year), and the time it’s taking to heal and get back to feeling normal.

Dennis Maione, 49, Winnipeg

What surprised me most was that “having” cancer was not nearly as devastating as being “predisposed” to cancer. Twice I had it; twice it was removed. And while those two experiences were traumatic, they have been nowhere near as traumatic as having to sit with my son, at 18, while the geneticist told him that he had inherited this gene from me.

Sonam Wilde, 64, Toronto

At 61, it was no surprise to me – 1 in 3 people will have some sort of cancer, so why not me? What surprised me most was my lack of fear, the knowledge that death is a part of living. I simply wanted to take the fear away for others. I guess that was why my close friends stayed away from me.

Lilly Mirijello, 45, Montreal

What surprised me most about living with cancer is how quickly our survival instincts kick in and we go into fight mode. I never imagined that I’d be so strong. But then again, when faced with this horrible disease, what choice does one have? It’s sink or swim, and I chose to swim.

Stephanie Sliekers, 29, Toronto

At the time of my diagnosis, I was training for a marathon, dating a new guy, living on my own, and launching a career in the city I love. Cancer forced me onto the sidelines at a time in my life when getting ahead was my only goal. I’ve been in remission since completing chemotherapy and radiation treatment three years ago.

I am still surprised by the psychosocial impact of illness that lingers long after the physical side effects have healed. I never imagined how strained my relationships with my family and friends would be because I was sick. I thought I’d be fighting off love, support, and well wishes. As it turns out, people are pretty awkward and generally confused. I didn’t expect to feel so alone. I’ve since learned isolation is one of many experiences unique to my age group because so few of our peers have endured an experience even remotely similar.

And I didn’t expect to develop anxiety. Nobody warned me that years after treatment was over, when my life, body and health had all returned to “normal,” that I still wouldn’t be able to shake the constant feeling of impending doom.

Orna Shazar, 55, Toronto

I was diagnosed Oct. 23rd 2013 with breast cancer. Going to Princess Margaret Hospital made me realize how major this is, how many people with cancer there are. The surprise was realizing how big cancer is and how many people are affected. Another surprise was how the diagnosis brought out my desire to do things that are out of the ordinary. For example, before my bilateral mastectomy my two daughters and I made cupcakes which resembled breasts. This was my kind of Art Therapy, part of a “Farewell Breasts” party. The next morning before my surgery we handed these out to the nurses. We have some a great photo of these. It was important to me that I wasn’t going like a lamb to the slaughter.

Gail Palmer, 60, Ottawa

I was diagnosed with breast cancer six weeks after completing a half marathon. Surgery was quickly scheduled. The mastectomy was smooth sailing (wisdom-teeth surgery was more difficult), and chemotherapy started. What surprised me most is my shifting perceptions of what it means to have cancer. Cancer to me was equated with illness, fragility and death. It was something that happened to others who were easily identifiable by their pale complexions, their frail, thin physiques and bald heads. Cancer is not the grim reaper or the malevolent bully out to rob me of all the love, joy and happiness being on this planet has to offer. I have been stunned and moved by the tremendous love that surrounds me and feeds me. Family and friends send loving messages and care packages, they shop with me for wigs, pick out scarves, and most of all don’t forget who I am, seeing my strengths alongside the cancer.

Kathy Fisher, 57, Innisfail, Alta.

The most surprising realization was that, no matter what, life must go on. Even if you’re puking and crapping the bed at the same time from your chemotherapy, you still have to get up and go pay the Visa bill.

Marie De Haan, 47, Washington

I am HAPPY, much happier than I was before I got cancer. I always dreamed I’d grow up and write children’s books. Suddenly I was 40 with no book – only three children. Then I got the diagnosis, and just started writing. I haven’t stopped writing since. Life is a gift!

Joan Anderson, 67, Ottawa

The biggest and best surprise is that living with cancer is doable. Live life one day at a time; you will find the strength when you need it. I had surgery to remove my gallbladder. When I woke, a sombre-looking surgeon broke the news that I had late-stage ovarian cancer that had spread throughout my abdomen, to my colon and to my gallbladder. Chemotherapy and surgery followed, leaving me with a colostomy, but feeling very hopeful.

Submissions have been condensed and edited.

Aviva Rubin blogs about enduring, enjoying, bemoaning and lampooning life with cancer at nothinginmoderation.ca. Follow her on Twitter at @aviva_rubin.

Follow us on Twitter: @Globe_Health

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