A Researcher Attends a Conference, This Time as a Patient Advocate

As a psychologist and disaster researcher, I’ve given hundreds of presentations, including keynote addresses, at professional conferences around the world. But when I showed up this past June to spend a day at the American Society of Clinical Oncology Annual Meeting in Chicago, 40 minutes from my home in Wheaton, Illinois, I felt like I did at my first conference 20 years ago when I was a frazzled student researcher.

​My decision to attend my first cancer research conference was admittedly last-minute, motivated by a recommendation from a fellow cancer survivor and a realization that I could meet some online acquaintances in person. At the conference, I was greeted by an attendant asking me which registration category applied to me. I skimmed the list of options but wasn’t sure which item to check, so I gave my best one-minute elevator summary:

​I’m a disaster researcher. But I’m about to start working on a small psychosocial cancer research grant. But I don’t consider myself a cancer researcher. I was diagnosed with stage IV colon cancer. But I’m NED (no evidence of disease). I also just found out I’m going to be a Fight Colorectal Cancer (Fight CRC) Ambassador. And even though it’s been six years since I was first diagnosed, I’m just now starting to get connected to the cancer community. All that is to say: I’m not sure how I should register. (I never claimed it was a good summary).

The attendant pondered which category to place me in as I checked my email to find out where I was headed for my first meeting of the day. “You are all set,” the attendant said, handing me a conference nametag. Because I was so distracted, I didn’t notice which category she chose.

After getting lost several times as I made my way through multiple large buildings housing the meeting—more than 42,000 people registered for the gathering at McCormick Place—I arrived at the room indicated in my email: the Patient Advocate Lounge. ​

“I’m sorry, but I don’t see you registered as a patient advocate,” said the woman working at the welcome table just inside the lounge area. (I later learned that I could have registered as a patient advocate and paid a reduced fee had I registered in advance.) Thankfully, before I had the chance to subject her to my rambling summary of why I was there, the person I was meeting recognized me from our Twitter conversations. “Jamie is a patient advocate,” she interjected and pointed me to a coffee table. It wasn’t until after we had been talking for a while that her words began to sink in—I was attending my first cancer conference as a patient advocate.

Within minutes, she had helped me get the lay of the land by introducing me to several other patient advocates, letting me know there was a whole patient advocacy section in the exhibit area, and pointing me toward some patient-centered sessions that were coming up later in the day.

After meeting with more people in the lounge, I decided to check out the exhibit area. As a researcher, I felt like a kid entering Disney World for the first time as I looked at all the cutting-edge research and information around me. But as a cancer survivor, I felt like a child with sensory struggles who was quickly overwhelmed by my surroundings.

I thought maybe I was just tired after a particularly busy week at work, and I continued to walk from exhibit to exhibit. I noticed my emotions bubbling up to the surface like thought bubbles from the Pop-Up Video television series that used to air on VH1:

I feel both at home and lost.

I feel like part of the community and an outsider at the same time.

I feel a sense of comfort and uneasiness mixed together.

I feel curious about the latest research findings and afraid of what I might learn.

I feel like I have something to offer and simultaneously like an imposter.

I feel both energized and exhausted.

Seemingly out of nowhere, I sensed a familiar metallic taste in my mouth. My anxiety began to rise. That’s when I realized I was reading a display outlining the benefits and potential side effects of one of the chemotherapy medications I had taken during my treatment. A lesson that I’ve learned from my cancer journey—but still struggle with—is to listen to my body. In this case, my body was telling me I needed to take a break from the conference and regroup.

I found a quiet corner to grab a quick bite for lunch away from the familiar images and reminders that had threatened to trigger unresolved emotional wounds. I gave myself permission to skip the sessions I had hoped to attend. Instead, I decided to read and prepare for my last meeting of the day, which was scheduled to take place in the exhibit area.

I once again made my way through the labyrinth of exhibits until I spotted the patient advocacy section, where I was meeting up with one of the Fight CRC team members. We had met on Twitter during Colorectal Cancer Awareness Month. I was greeted with a smile and quickly introduced to another patient advocate. This time, my emotions bubbling up to the surface were different:

I feel at home.

I feel like part of the community.

I feel a sense of comfort.

I feel curious about the latest research findings.

I feel like I have something to offer.

I feel energized.

Though I never did make it to a single session, I learned so much from attending my first cancer conference. I realized my most meaningful moments at the conference came from embracing my patient experience—not my research experience. Attending the conference helped me start to understand where I fit into the whole cancer ecosphere and gave voice to some of my recent experiences.

Overall, my biggest takeaway from attending my first cancer conference was this: Stopping cancer not only requires experts with research skills ​but also experts with patient experience. Now that I know I’m a patient advocate, maybe I’ll even preregister online for my next conference.​​

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