Last updated: August 2022
After I was diagnosed with stage IV lung cancer, I naturally progressed into becoming a lung cancer advocate. It didn't happen right away because I had to process some things first. I had accidentally participated in two lung cancer walks before being diagnosed but at the time it wasn’t personal and I was only participating since it was for my workplace.
Advocacy comes in many forms
Advocacy comes in all sorts of forms. Since being diagnosed, I have participated in many focus groups held by the pharmaceutical companies to help direct advertising, and form medicine-specific support groups, as well as how to better help the patient once diagnosed. I have “stormed the hill” with the Go2 Foundation both in person and virtually to help direct funding to lung cancer research. I offer support via the phone buddy programs at 3 cancer organizations. I led the Breath Deep Kankakee event for two years. Finally, I have participated as a consumer reviewer for the Department of Defense’s congressionally directed medical research program. This is all over the span of 8 years. I have finally gotten to the point where I am experiencing advocacy fatigue.
My evolving relationship with advocacy
My interest in working on lung cancer advocacy started to decline a few years ago. When I was first diagnosed, I jumped on Facebook and joined every group that was specific to lung cancer. The more people I met through these groups, the more people I had to grieve once they passed. So, I un-joined almost all of the lung cancer-specific Facebook groups. I have stayed in a few groups because I do feel that I can help others with things that I have learned along the way.
I remember sitting up late one night and filling out the application to attend my first Hope Summit. It was around 2 am and my mind was racing about all things lung cancer as that was a common thing for me in the beginning. But after attending 5 hope summits and meeting so many people I decided that I didn’t want to meet any more people. Before it was canceled, I had no plans to attend in 2022, and I'm not sure if I will attend if it ever does get to happen in person again. We will see!
We need to join together and elevate our voice
There are many things wrong with lung cancer, such as the stigma, but I think another big issue that is faced is that we are not living long enough to make a big impact on lung cancer research. Just as we start to advocate for the disease it gets sneaky and progresses further and becomes immune to the treatments and then takes our fierce advocates away from us. Now, having to start over with the next set of advocates. This is important to note we cannot stop being lung cancer advocates.
I promise to step up my advocacy efforts moving forward because I am still here and I have a voice. I am a quiet person, but my story is important to share. I have learned so much along the way that needs to be shared with others.
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