For years, I chalked up his secrecy to the roles we’d each played in the family. He was in many ways a traditional patriarch, and although I was an adult, I was his youngest, and female at that.
Now that I am dealing with Stage 4 colorectal cancer, I have learned that there was likely more in play.
Stage 4 means the cancer has metastasized. In my case, although the original tumor in my colon has been removed, the cancer manifests in many small tumors in my liver that cannot be removed surgically. This means I will likely be in treatment for the rest of my life.
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Even with this diagnosis, I know I am lucky. My treatment — chemo infusions every two weeks — has gone remarkably well. Nearly three years since my diagnosis, my “mets” have not spread to my lungs or my bones, and many have shrunk or disappeared. Plus, the side effects of the biweekly chemo are relatively mild: some nausea and fatigue on the weekend after infusion. Some tingling in my toes and fingertips. A small price to pay.
Still, rather than share my good fortune, I was reluctant for a long time to discuss my illness.
I didn’t go as far as my father in concealing my diagnosis; I told family members and close friends early on. But I was unwilling to share the details of my prognosis or ongoing treatment with my wider circle.
At first, I didn’t see any connection between my reticence and my father’s. I had my own reasons to keep quiet. I feared professional fallout: I’m a novelist, and I worried that publishers might hesitate to give me contracts for series or other work. There was also a social factor: I didn’t want to be known primarily as a patient, as “cancer lady.”
This changed for me when a friend decided to go public with his own cancer diagnosis. He was lucky — his illness had been caught at an early stage — but he still faced some major decisions about how to proceed. Uncertain which treatment option to pursue, he posted about his dilemma on social media. Among the many responses to his post — some practical, some less so — was one that really struck me: a thank you. Rather than offer an opinion or advice, this commenter expressed gratitude to my friend for posting about his struggle, calling it a gift to other people dealing with disease now or likely to face it in the future.
That one comment, even more than the outpouring of support my friend received, made me think differently about my own choice to keep quiet — and my father’s. The word “cancer” carries real stigma. More important, hearing it echoed back by others gives it gravity. Once your neighbor, your agent, and your cousin know your diagnosis, it becomes impossible to laugh it off as a mistake. The fictions of denial disappear. Talking about something makes it real. That was hard for me. And no doubt it had been hard for my father.
But silence doesn’t make cancer go away. And that comment on my friend’s Facebook page struck a chord. In response, I decided to try my own post. I wrote and revised and considered deleting the whole thing at several points. But then I posted about my illness and treatment and invited readers to ask questions.
To my surprise and delight, the outpouring has been amazing; I’ve received more response, even, than to my frequent postings of cute bunny photos. And while I have fielded a handful of questions, more of the hundred-plus comments are from people sharing their own stories about a variety of health issues, some, I believe, for the first time.
As health care improves and our lives are extended, more and more of us will be dealing with chronic illness of some sort. To be able to publicly discuss our situations — the choices, the tests, the realities of side effects — is an incredible relief. Perhaps these conversations will eventually lessen the stigma around diseases such as cancer.
Knowing that so many of us are dealing with illness while still living our best lives changes how we view the world. It gives us a community, and it invites the rest of the world to join with us. I’m sorry my father didn’t live to see it.