In 2017, Robin McCallister was diagnosed with a disease she had never heard of before. The word cholangiocarcinoma became inseparable from the Tallahassee, Florida, native’s world, but instead of being stuck in the unknown, she decided to give back to other cancer patients.
Robin is a mentor and patient research advocate with CholangioConnect, where she represents patients’ interests in the cancer treatment field and motivates others to be active in their own care. She has worked on numerous projects, including reviewing grant proposals, patient surveys, attending educational seminars, summarizing scientific posters, and moderating annual cholangiocarcinoma conferences — all while still undergoing treatment herself.
Describe how you first discovered the CholangioConnect research advocate program and mentorship opportunities:
I was diagnosed with cholangiocarcinoma in 2017, which is a cancer in your liver. Someone put me in touch with the only employee at CholangioConnect at the time who was a patient advocate. She was really helpful and inspiring; it was just such a hopeful experience. She told me to go to the 2018 Cholangiocarcinoma Foundation’s Annual Conference to meet other people going through what I was experiencing. At that conference, I was just walking down a hallway and someone pulled me aside to ask if I ever wanted to volunteer. I was just finishing chemotherapy at the time so I was unsure, but I just said sure. Volunteering wasn’t on my radar, but the fact that people reached out to me and asked meant a lot. It was also a good thing to take my mind off things.
Can you explain your volunteer activities and how they’ve grown?
I started out volunteering at CholangioConnect’s mentor program where they match you with other patients going through treatment against cholangiocarcinoma. But the work that takes up most of my time now is being a patient research advocate. I have different tasks everyday, but I help with anything within the space between patients and the treatment industry.
I try to help represent and facilitate patient interests throughout the treatment research process. The Foundation raises money to further its research in cancer and how to treat it, and I basically come in and raise the patient’s voice in all areas of research and trials that I can. It’s a lot of information gathering and giving. If we’re going to a treatment trial and need to give out information about it, I want the trial leaders to think about what the patient would want or how they would feel with certain decisions.
I also watch a lot of training and participate in disseminating information to the patient community, kind of like social media to patients. This helps me be an even better mentor because I’m keeping people up to date. I can help people understand the treatment process and ensure that people take their medicine right because it’s complex and these people are vulnerable to navigating a new disease they’ve never heard of.
What inspires you to volunteer?
When I first had contact with other patients, it was just devastating because it’s a deadly disease and you feel so alone because you’ve never even heard of it since it’s not one of the common cancers. It was so hopeful to talk to Melinda who was also a patient herself and to see the researchers, what they’re doing, and how hard they’re working on treatments. I felt so connected and hopeful. Even if you know you may not make it out of it, you’re doing your small part and moving the science right along. It’s been a great experience. This advocacy role is out there for any disease. You get a sense of purpose volunteering and I enjoy being a part of the community and seeing people excited about the trial they get to try.
What have you learned through your experience as a volunteer?
A lot, too much, really. I’ve learned a lot about the whole field of cancer, that’s for sure, and the different ways that people look at it and cope with it. I love this organization and the Cholangiocarcinoma Foundation. They take on [so] much…and still do it well, and it’s inspiring.
What would you want someone to learn from your service story?
I would like someone to learn how much you can personally gain from volunteering, how much it can enrich your life, and that it can connect you and help you see something positive in a world of conflict.
Why is it important for others to give back, especially in the medical field?
You can learn a lot about one cancer that applies to other cancers. It’s a tough field because there are just so many vulnerable people and there’s pain for the families involved, so we need sources of hope. Volunteering found me, I didn’t find it, but I’m happy with it. It’s definitely an area of need.
Are there any partnerships, programs, or events that you are excited about?
The Cholangiocarcinoma Foundation’s Annual Conference will take place again in February and people love it so much because there are both doctors and patients in attendance. That interaction is important. It’s where I laid eyes on and spoke to another patient in 2018, too. This year’s event will be hybrid; occurring both in person and online.
Do you want to make a difference in your community like Robin? Find local volunteer opportunities.