[2021-01-30] Every story is unique

I spent the morning reading other women's stories of their journey with ovarian cancer. I've done very little of that since being diagnosed last July and undergoing surgery and chemotherapy.

Perhaps I felt strong enough to read others' stories because I'm now in what I hope is the healing phase of my disease. I do feel like I'm in the final stage of what nursing professor Linda Rodebaugh and colleagues described as the four stages of grief, including the loss associated with a life-altering diagnosis: reeling, feeling, dealing and healing.

My search for stories of ovarian cancer stemmed from an unusual find—a quote attributed to The Swan Dreams Project, whose goal is to help youth know that they are not limited by stereotypes or by their environment, but only by their dreams:

The problem with stereotypes is not that they are untrue but that they are incomplete. They make one story become the only story.

What struck me most about this quote is that one story is not the only story. That led me to ponder my own narrative and its utility among all the other stories about ovarian cancer out there. I concluded that it doesn't matter how many memoirs about ovarian cancer journeys have been told because every story is unique, and every story will touch different people in different ways.

Erin's story, published on Ovarian Cancer Canada's Feature Stories, captured this well:

"Before cancer came into my life, I didn’t realize how unique every person’s cancer story is," she says. "I learned that there is no right or wrong way 'to do' cancer. There is coping, there is love, there is getting through, there is thriving, there is fear, there is kindness, and there is whatever it takes for you to get by."

Erin continued:

"I felt I had a moral obligation to share my story. So one night before the holidays, I wrote a Facebook post. What happened next floored me."

Her post was shared more than 275,000 times and was picked up by newspapers and television shows. Erin received thousands of emails from people saying that her story had led them to have conversations with their doctors, and two women told her that these conversations had led to cancer diagnoses.

I was fortunate, early in my journey, to have two wonderful women reach out to me to share what they had been through.

Christa Wood sent me a link to her own blog: Christa's Journey: Battling ovarian cancer and journaling along the way. I loved this quote from her post Happy October:

I don't have this blog as a selfish, poor me outlook. I started this blog as a way to keep people informed of how things are going, to help me manage through some emotions, and to leave memories for my family. I'm not a writer, nor do I claim to be good at it. But it helps heal, it helps communicate, and I'm hopeful that it may help some others going through something similar.

Christa's blog posts and her emails to me have been both encouraging and hopeful, so it's safe to say that she has succeeded in her mission to help others. Like Christa, I did not create Jenesis to draw attention to myself, and I did worry, initially, that it could be perceived as such. But I persevered and I'm glad that I did, as the response has been overwhelmingly positive and good for my mental health.

The second woman who contacted me was Johanna Bertin, the wife of a former colleague. Her story, encapsulated in an article called "The Box" that she wrote a few years ago and sent to me via email in November, was also incredibly valuable. The box refers to a travel trunk Johanna filled with mementos of her journey, such as appointment slips, chemotherapy schedules and hospital ID bracelets. What impressed me most in reading this article was Johanna's statement about what was not in the box:

What’s not in the box is perhaps even more significant. No statistics on cancer. No death rates by year or type. No cautionary tales of recurrence rates. No newspaper clippings on new and positive treatment options. No obituaries of friends who’ve died of cancer. There is only me, my story, my experience of my cancer.

I appreciate Johanna's creating "a receptacle of memories and past events, not of a present life"; there is much I can take from her example of acknowledging what she went through but refusing to let it take over her life.

Here are excerpts from some other stories that made an impression on me:

Michele remarked:

I never could have imagined turning my cancer diagnosis into something positive, but here I am doing just that, a phenomenon known as "post-traumatic growth."... As a cancer survivor, you see life through a special lens and even though it may sound crazy, I am grateful for these special glasses. I try to always keep in mind another favorite quote of mine, "Just when the caterpillar thought the world was over, it became a butterfly."

Randalynn noted that she doesn't cover up her scars:

Wanna know why? Because someone else out there needs to see that they too can heal. That their "scars" don’t define them and shouldn’t keep them from wearing or doing whatever it is they may want to do.

Annie, who called a helpline for those diagnosed with ovarian cancer, expressed:

I was thrilled to learn that there were long-term survivors of ovarian cancer, including advanced stages, and many women went back to work after completing treatment. I was filled with so much hope that by the end of the call I knew that I was going to get through treatment, too.

She went on to say:

Then the cancer recurred twice with liver metastasis and I felt devastated. But, I also felt empowered because I had access to information that I needed to participate in making treatment decisions with my medical team. After three major surgeries, five different chemotherapy regimens and a clinical trial, I am currently enjoying my third remission and I feel great!

Linda shared a message of hope:

I’ll never forget that day when my doctor came in to tell me that I had cancer. But she said, "We can beat this." ... When you hear the word "cancer," there can be an immediate kind of depression that occurs that can take us to a place where there is no hope. I want people to know that there is hope—healing is available—there is life after cancer.

Crystal Reiter acknowledged that she feared recurrence of her cancer, but:

At a certain point, you realize the cancer might come back and it doesn’t have to be the end of the world if it does...there are things you can try, from first to fourth line treatment.

The same article quotes Dale Dirkse, co-ordinator of the Wellbeing after Cancer program at the University of Regina, who helps ovarian cancer survivors cope with the uncertainty of recurrence:

"Notice your thoughts and feelings about cancer returning and allow them to be there," she says. "Focus on what you are doing, this fuller contact may result in you feeling better and worrying less."

In her online program, Dale provides guidance on techniques for managing depression and anxiety following treatment for cancer. This includes practicing mindful acceptance, which is about sitting with anxiety and worry. To illustrate, she invites people to envision their fears as waves in the ocean, picturing themselves watching the waves come in and out as they remain safely onshore.

"You don’t have to fight these waves, but you don’t have to join them either," says Dale. "You—the person who experiences and observes your life—are separate from your fears of cancer."

Sharolyn—who, at the time of her story, was 31 years beyond her ovarian cancer diagnosis and treatment—commented:

I learned many valuable life lessons throughout that year of treatment for ovarian cancer. I now do the things I enjoy and want to do, not those things that other people think I should do. I value time with my husband—the ironing will always wait—but the day will come when we may not be able to do things together. I take the time to send birthday cards, get well cards, and personal notes because I realize what a powerful message of love and caring they convey. Most importantly, I try to live each day without worrying about the things I have no control over.

Margaret revealed:

The gift that this journey has given me is to know how much I am loved and cherished. And...not all of us have that gift in our lifetime to know that we are loved and cherished. And I really treasure that.

I've taken a little bit from each woman's story. Like Christa, I'm creating memories for my family. Like Johanna, I'm trying to keep cancer from assuming too great a place in my life. Like Michele, I'm working to turn my cancer diagnosis into something positive. Like Randalynn, I'm sharing personal details to reduce stigma around cancer. Like Annie and Linda, I'm striving to maintain hope and a positive outlook, regardless of what happens. Like Sharolyn, I'm endeavouring to do what I want, not what others tell me I should. And like Margaret, I am treasuring the love that has come into my life and the kindnesses that are extended to me every day.