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Progressing beyond patient


I’ve had the opportunity to be on a few podcasts lately to share my story.

I’m frustrated to find that at times it is becoming harder and not easier to put into words what I’ve learned over the past four-plus years—perhaps because the exercise of writing twice a week for my Substack has overpopulated my brain with insights, realizations, and lessons.

I’m so wary of rambling about all of them that in my last podcast, I overedit myself. I don’t trust myself to go a click deeper than headlines. Afterwards, I can’t stop thinking about what I should have said, and I toss and turn that night, frustrated that I missed an opportunity to authentically share enough of what I knew or had learned—because I was too worried about saying too much, afraid to come across as some egotistical cancer know-it-all.

Thinking about it a little more, I realize that this feeling is familiar.

Two weeks prior, I was waiting to get my scans at MSK. While there, I run into the same patient several times—I come out of my dressing room in a robe as he enters his to change; then he passes me again as I sit in the hall waiting to be called back. He is about my age, and I find myself wondering if he is early in his journey, or a veteran, like me. Is he feeling hopeful about what his scans will show; or has he seen a rising CEA that caused apprehension?

I feel like I should say something—but also, particularly because I am feeling optimistic about my own scans, I don’t want to say anything that makes me seem like an asshole.

So, I say nothing, sitting in silence.

A few minutes later, another patient, much older, enters the hall. His eyes twinkle as he gestures at my hospital gown. “I love that look on you,” he cracks.

I am caught too off-guard to muster a clever response. “Thanks—you, too,” I say. A moment later I wish I had said something about seersucker being all the range this season, but by then he is gone.

Minutes later, they call me back for my scan.

Passing through radiology, I joke with the medical staff, compliment the nurse who thought to cover my bare arms with a blanket, lift my knees proactively as they placed the bolster under them, accept the headphones they offer me, and assure the team I’m not claustrophobic. I know what to do.

Afterward, they wish me all the best, and I head out to the hall—only to bump into the same patient I saw on the way in.

“Should I say something?” I wonder again. “What if I do, and he thinks I’m hitting on him or something?” I silently enter my changing room, and he his. By now, I am officially feeling silly—I’d had dozens of scans by this point, but I couldn’t figure out what or whether to say something to a fellow patient who was going through what I well knew to be the most stressful part of the whole process?? Seriously?

I am still shaking my head at myself as I open the door of my changing room to leave—just in time to catch the eye of the male patient.

“Good luck,” he says.

“Thanks,” I respond. “You, too.”

I feel like hitting my forehead with my palm. It was just this simple.

I’ve gotten pretty good at putting myself out there as a patient, and I’m proud of everything that I’ve learned over the past few years. Now, I need to figure out how to get out of my own way, and put what I’ve learned into action.

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