Y’all. Outside of advocating for myself or in my workplace, I didn’t know what advocacy could look like. A few months back, I just googled it. Because the “good cancer” is overrated and I felt called to do something - anything! Which is kinda where this page came into play too. The National Coalition for Cancer Survivorship* showed up in that google search. The NCCS popped up with a 3-day conference of sorts in Washington, D.C.. I saw that the NCCS offered a scholarship for this Cancer Policy and Advocacy Team symposium so I said, “what the heck. Why not just apply?” Thinking to myself that they will see right through me, a young adult who barely knows my cancer A-B-Cs.
Fast forward to a quick reply saying I was in! Not only was my hotel covered, they offered a travel stipend as well. Since I did not know if I would have a job come June, I was pumped about that! Excitement was not my only emotion…I also deeply felt uncertain, embarrassed almost- like I would be an imposter going into this Symposium. Even on Wednesday, June 24th when I walked into the conference room, I felt that I didn’t belong. Sometimes I feel that my cancer doesn’t “count.” That its been ingrained in my head that it was “just radiation” and not chemo. That still people call thyroid cancer a “good” cancer. That I didn’t lose all my hair so how could I relate to the 80 other people there.
Very quickly, I realized I was feeling all the wrong things. I showed up and holy cow there were so many welcoming faces. Day One consisted of some introductions, as about 20% of the attendees were first time party-goers. We were at tables by state as we would be going to see Senators or Congressmen from our districts the following day. I sat next to a 2-time cancer survivor (whose secondary cancer was thyroid cancer) and she had been advocating in a public forum for over 20 years. To my left, was a nurse, patient advocate, and breast cancer survivor, new to this kind advocacy just like me. I spent the following two days hearing their stories and others like them. Such a unique side to every one there. Whether they were survivors or caregivers or advocates or the triple whammy, all of the members at the CPAT Symposium were there with others in mind.
Day Two, we all got to talk about Survivorship and how the “cliff” of ringing that bell (something I still haven’t gotten to do) or finding out you were “healthy” again didn’t mean the end of the journey. We shared facts and feelings, as each of us had a different story.Some attendees were wrongfully terminated following diagnosis. Others had loved ones walk out of their lives. Yet they all had a story to tell, and damn those stories are powerful. We even got to share our stories to Senators, Congressmen and their teams alike to all talk about that survivorship word. How it looks different for many people. How care stops after the cliff, when so many mental, physical and emotional symptoms begin. We asked for their partnership and sponsorship for the Comprehensive Cancer Survivorship Act. This act, introduced at the end of the last Congress, was initiated the day after we visited with the teams. It was so fresh in many of their minds that we hope and pray they take our stories and advocacy to heart as everyone has a cancer connection.
After tugging on heartstrings, we all regrouped and got to hear about resources and teams working to make continuity of care a relevant thing in healthcare. There was a mother, previously diagnosed with breast cancer, and her college-aged advocate of a daughter who shared how they have been working to amplify advocacy as a mother daughter pair for years up to that point. Day three, a PhD/ DPT pair spoke about how they work in cancer rehab. And how up until a few years ago, many insurances didn’t realize or cover the importance of rehabilitation once someone loses their energy, maybe a gland, maybe their center of balance. Hearing these ladies and all the other speakers talk, made me realize that I was doing the right thing. Not only did I get to tell my bare-bones story, I realized that there is so much more to do from here.
Thanks for giving me a platform to begin my very public very personal advocacy journey. I look forward to what is to come!
-Mary 🎗️
P.S. Please let me know your thoughts or comments below! Want a list of resources I gained from the symposium and the wondrous people who attended? Let me know, maybe it can be the next topic!
*want to join? Check out NCCS at https://canceradvocacy.org