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By Carrie Brooks-Joiner, KAB Member

We know what the “C” word means. Given the prevalence of cancer in so many forms, most people have at least a passing familiarity of the disease. Yet, until it demands our attention, cancer tends to stay in the background of our consciousness.

For members of the Knot A Breast Breast Cancer Survivor Dragon Boat team members, we have already faced the big “C”. For some of us, and others who have experienced cancer, it is not the big “C” that dominates our thoughts, but the big “R”; recurrence. My handy dictionary explains recurrence as the “fact of happening again”. Dr. Google goes on to explain that in a cancer context, recurrence is cancer that has recurred (come back or metastasized), usually after a period of time during which cancer could not be detected. Cancer may come back to the same place as the original (primary) tumour or in another place in the body. 

I was a cancer innocent. It never occurred to me that I would get breast cancer. There is very little cancer in my family and no breast cancer. I had none of the risk factors. I distinctly recall my mother explaining to me that it is cardiovascular disease that kills the women in my family. Perhaps she thought that somehow this awareness, and her reminders to pay attention to healthy living, would stave off that threat. Maybe it has, but there was cancer lurking behind it. 

To me, it was being blindsided by cancer, not the chemo, surgery or radiation that was hardest to recover from. I never saw it coming. It was like being hit in the head with a ball in the playground and you weren’t even part of the dodgeball game or really aware the game was going on. It stuns you and disorients you before you can make any sense of what happened. 

While I don’t accept that cancer is a “gift” or that it has made me a better person, I have learned to raise the bar on what is a health problem. I can brush off a nasty cold or the flare of a chronic injury as temporary minor annoyances; I know they won’t “kill” me. But I have to admit that there is the fleeting moment where I wonder whether the new cough or pain is a symptom of metastasis.

Recurrence rears its head at unexpected moments. At work, we joke about the hope of being retired at the conclusion of long-term projects, but that’s not where my thoughts go. When one of my daughters casually refers to getting married or having children “someday”, my silent thought is “Will I live that long?”.

As a breast cancer team, we talk about cancer frequently. There is tremendous value in sharing experiences and information about treatments, products, and services in a healthy and positive way. But other than the off-hand comment or joke, recurrence is not something we talk openly about. Perhaps it is reserved for more private, over coffee conversations or smaller car-pool chats. I suspect that it is a common fear among us but I don’t really know to what extent it fades or heightens over time or how it’s different for those at stage 0 versus stage 3.

I envy those who, post-treatment, can take a “no evidence of disease” or NED status, as “cure” and who can park cancer thoughts in the far back parking lot and move on. I am not able to do that. (Perhaps I am being naive that anyone ever really moves on.) My knowledge of my high risk of recurrence stays with me. A glimpse of my mastectomy scar as I get out of the shower, or a damn pink ribbon on my package of lettuce, are constant little reminders that register to my subconscious. While the return of cancer is on my mind, it doesn’t haunt me in a depressive way or negatively impacts my daily life. Like a song I can’t get out of my head, or a word I can’t quite remember, recurrence hovers just under the surface of my daily thoughts.

I know that my awareness of the risk of recurrence is a little bit of armour. Informed by a growing file of peer-reviewed journal articles and familiarity with Kaplan-Meier overall survival graphs, I am still frustrated by the lack of specificity. If, or when, cancer reoccurs, I imagine I will be angry, sad, and disoriented, but I won’t be blindsided. The return of cancer will be much easier for me to rationalize than the original diagnosis.

So what do I do with all this? What do fellow paddlers do with this? I have no good advice for anyone else with recurrence on the brain. It can be a deep dark hole that is hard to climb out of once you fall in. Or it can be a place that you never acknowledge exists. For me, the hovering presence of recurrence is a reminder to live a little faster and live a little more deliberately.

Author’s note: This blog was written prior to COVID-19, and published in 2020 while the world is in a pandemic. Measures that are currently in place to control the spread of the virus are negatively impacting KAB members’ treatments, appointments and healthy living routines. Even under these exceptional circumstances and new health concerns, thoughts of recurrence still linger. All the more reason to connect with others, have authentic conversations and find joy in every day.