It’s been four (4) years since I heard the words “you have breast cancer” and “you are metastatic.” This year has been the first time that I didn’t spent a lot of time thinking about those fateful days and reflecting on that day and what has happened since then. Honestly, I was a little surprised when I looked at the calendar and discovered that both the initial diagnosis date and the date when I found out I had been metastatic from the beginning had passed without me noticing.
But those dates are burned into my memory, every little detail.
When I entered this new world of those diagnosed with breast cancer and then metastatic breast cancer, I was immediately overwhelmed. There was an entirely new language and priorities and struggles and people (all those doctors!) and medication and limitations and just an overall sense of blurred reality. Could this really be me? Could this really be happening?
And I struggled with why.
The people around me felt foreign, wrong, out of step. I suddenly didn’t fit where I used to, I couldn’t carry the responsibilities that I’d typically fulfilled, I wasn’t productive in the same way, wasn’t needed the same, couldn’t physically play with my children or interact with them. The transition that happened wasn’t like any other transition – graduating from school, getting older, getting married, opening a business, having children. In all of those other transitions, I was the same, it was the circumstances that changed.
This time, it was me that was a stranger in a strange land.
At first, I kept this feeling to myself, harbored my misgivings and how the entire world had changed without warning. When I tentatively attempted to put my thoughts and feelings into words to the people I trusted, the response wasn’t helpful. They didn’t get it, I couldn’t make myself understood. For someone like me, an advocate, a writer, a wordsmith, this inability to communicate was another change, another astonishing experience.
I couldn’t trust myself any longer, my body, my abilities, my strengths, gone.
And then, quite by accident, I stumbled upon a few online support groups (I’d been asked not to come to the regular breast cancer support group at my original cancer center for fear that I would scare the newbies). At first, I lurked, making sure that there might be a kindred spirit or perhaps two in the online group. Much to my surprise, I found many more than just one or two. All of a sudden, I read and heard the cries of my heart and soul from the keyboards and mouths of strangers.
How could they KNOW?!
It was often like these other women were literally inside my body, articulating the words that spoke to my cells of their existence. How could this be? I’d never before experienced such a meeting of the minds, seen and felt the shared experiences, literally been able to finish so many women’s sentences. This was unlike anything else since I’d often taken the road less traveled in other transitions/experiences, following my heart in business, in divorce/marriage and in parenting.
And I understood, finally, the value of sharing openly and vulnerably, of demonstrating the generosity in sharing experiences, and connecting on a heart level. I gained friends, I gained sisters, I found more than one kindred spirit.
It made all the difference.
With gratitude,
Abigail Johnston
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