Tamara Barber: Learning to tell my story

Contributed by Tamara Barber

A few weeks ago, my husband and I played hooky from work to attend AllyCon, the Colorectal Cancer Alliance’s national conference. How could we not go, since it was happening right in our metro-Boston backyard, and many of the presenters were people we knew through my treatments at the Dana-Farber Cancer Institute? 

As a first-time attendee to any type of patient-centered conference, it was an intense few days. Living with cancer—either as a patient or survivor—is an emotional roller coaster, and this conference was exactly that. We heard my oncologist's latest findings on trends around young-adult colorectal cancer (scary, and yes I fit that bill). My surgeon answered questions about Lower Anterior Resection Syndrome (I can check that box, too). We attended a packed session about the role of genetics in colorectal cancer and what it means for our loved ones, as well as an even-more-packed session on the very personal side effects of radiation. 

The very last session of the last day, though, left me inspired because it shined a spotlight on the real and complex human experience of living with that one, short word—cancer. The session title alone, “Sharing your story with impact,” was enough to draw the two of us into a crowded room.  

Cancer leaves many stories in its wake. I came to this session nearly six months after having surgery to reverse my ileostomy, marking the end of almost a year of treatment for a recurrence from stage-III colon cancer. Two months ago my oncologist delivered the good news that my first post-surgery scans were clear, my blood levels looked good, and I was officially NED (no evidence of disease). When my husband and I came home from that appointment, he announced that, officially, we can go back to worrying about all the other bits of life that fall to the wayside when going through cancer. 

It feels like a gift to live in the mundane of daily life and not be distracted by medical appointments, intense side effects, and the constant buzz of questions and anxieties that ran through my head from the moment we learned of the recurrence last summer. 

And yet, I recently told a friend that I still feel as if I live a lifetime of emotions in a single day. Although I am physically strong and mentally tougher than I’ve ever been, I’m in a no man’s land that many cancer survivors go through. I’m “healthy” but still healing. I’m “moving on” but still integrating the past year into my identity. I’m optimistic but also scared and reflecting on what in the world my body and my family had to go through not once, but twice. And I’m somewhat ashamed of even questioning my good fortune when there are so many others who are not so lucky in their confrontations with cancer.

How to tell a story

I went to this session thinking, “Yes! I have a story and I want it to have impact!” I want my experience to matter to someone else, help someone else, save someone else from having to sustain the heartache and hardships that come with a cancer diagnosis. I need to find some sort of purpose behind the enduring trauma that is cancer. 

The two amazing facilitators of that session—Alexandra Miller from the Colorectal Cancer Alliance and Linda Murakami from Amgen, who is herself a cancer survivor and experienced policy advocate—made clear that advocacy and awareness around colorectal cancer depend on our stories. Forward momentum on this front cannot happen without our willingness to be real with others about what it’s like to be a patient, survivor, or caregiver. And for those who don’t know where to begin in synthesizing their story, here are three pieces to start with: 

Story of self

How have your values and mindset influenced your action in the face of challenge? It’s hard to be vulnerable, but this is the kernel of your story and makes the “issue” of cancer real for others. You already know this story by heart.

Story of us

How does your story fit in with the experiences and challenges that our broader community faces? Although your story is yours alone, there are universal truths in it that others can relate to. Perhaps it’s your experience as a parent having to talk to your children about cancer. Or maybe a light bulb went off for you when you learned that colorectal cancer was much more common than you’d imagined and that in fact a colleague had gone through it as well.

Story of now

What is the urgency and call to action that your story brings to light? Connect your story and universal truths to actions that others can take to affect change. And be specific in your ask, for example contributing to help you reach a fundraising goal, sending a letter to a lawmaker to lower the screening age, or seeing a doctor when telltale symptoms emerge. 

If you’re reading this, I want you to know that your story counts. Whether you tell it one on one over coffee, announce it on a stage, or let your presence speak volumes in a packed room of others who share your sentiments, your impact starts with the willingness to share. 

AllyCon’s “Sharing your story with impact” session was made possible by educational funding provided by Amgen.