Woman marching with sand hour glasses holding lung cancer awareness flag

When is the “Right Time” to Get Involved in Advocacy?

I’m frequently asked how I got involved in advocacy work for lung cancer. It didn’t happen immediately after my diagnosis in late 2013. Actually, it took me a little over a year to come to terms with my own lung cancer before I felt ready even to meet other patients, let alone help them in any way! And that’s OK.

Finding connections after diagnosis

Here’s my story. When I was diagnosed, I was fortunate enough to get connected to another lung cancer patient and super-advocate, Jill Feldman. Jill lives less than 10 minutes away from me and we have several mutual friends, but we likely would never have met if it wasn’t for lung cancer. Soon after I found out I had lung cancer, one of our mutual friends connected us and talking to another patient, especially one close to my age with kids around my kids’ ages, was an incredible experience for me.

Jill helped me find my awesome oncologist and told me so much about lung cancer that I thought she had a medical background! I remember getting off the phone with her after two hours and thinking that I would never be able to understand as much about lung cancer as she did.

Advocacy hesitations

Although I told family, friends and even acquaintances about my lung cancer diagnosis, I didn’t go “public” with my diagnosis immediately. When I first started treatment, I wore a neck brace for about 3 months due to concern over a cervical spine metastasis and if it wasn’t for the neck brace being really obvious, I don’t think I would have even told as many people as I did. It was exhausting to have to explain to people that yes, non-smokers can get lung cancer too.

However, over time, Jill convinced me to give LUNGevity’s Breathe Deep North Shore walk a try in mid-2014 and attend the LUNGevity National Hope Summit in mid-2015. I was too nervous to go in 2014, so soon after my diagnosis. I was worried that I would feel depressed surrounded by so many people with lung cancer, talking about lung cancer all day for several days. Instead, the opposite happened.

Discovering my inspiration

Meeting other lung cancer patients and hearing their stories gave me an incredible feeling of solidarity and hope. Some of the people I met at my very first Hope Summit (I’ve now been to four) are among my best friends today. I learned to talk to others about my experience and as a result, gained the confidence to enter the advocacy world. I attended lectures about the latest research, asked questions and found that I understood more than I thought I would! I went home determined to do more and started to look for opportunities to share my story, help other patients, and provide my patient perspective for the purpose of research in lung cancer.

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There's never a right time

Why am I telling this story? I want anyone who has been diagnosed with lung cancer to know that there isn’t a “right” time to get involved in advocacy work. It doesn’t need to happen immediately after diagnosis or wait until you are declared NED (no evidence of disease). Anytime that works for you is the right time and there are all sorts of ways to be part of lung cancer advocacy, whether it is by supporting other patients, getting involved in politics related to healthcare and funding, or participating in programs that include the patient perspective in research. Just find what interests you most and please let me know if you need any suggestions!

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