The Advocate I Want to Be
I’m an advanced lung cancer survivor for six years. For the first three years, I struggled with lung cancer, physical side effects, and mental effects. I wrote several articles about them.1 In short, my life was like hell.
Three years later, my cancer and side effects were under control, and I decided to live even for a short time. Soon after I entered for the second three years, I decided to advocate for lung cancer.
Equipped for advocacy
I started to read research papers, websites, blogs, and brochures from different organizations that were all about lung cancer. For the first time, I even became an efficient Facebook and Twitter user. I spent almost all the time reading everything about lung cancer, like a “sponge absorbing water”.
At the time, I struggled with severe chemo brain. I could read only ten minutes initially, and I couldn’t remember anything that I had read. The terminology of treating cancer was another hurdle. In addition, I couldn’t speak and stuttered because my brain Mets affected my language center. Looking back, it’s a big struggle.
Meanwhile, I started to talk to lung cancer patients and scientists/doctors worldwide through the internet and attending conferences. I went to IASLC/WCLC 2018, 2019, and ILCSC 2019 in person and later online. So I got to know many patient friends and doctors. We formed a long time unforgettable friendship.
Trying my hand at all things advocacy
Once I got myself started, I tried every advocating activity that I can put my hands on. But, at the same time, I also considered my interests, strength, and weakness. For example, I wanted to be a writer when I was young. So when LungCancer.net contacted me to join their team to be a contributor and a moderator in 2019, I have no hesitation.
Another example is that I was shy to ask people for anything, not to mention fundraising. So in the last three years, I led fundraising activities in my community for GO2 Lung Cancer Foundation and Lung Cancer Canada for about $45,500. Meanwhile, I used strategies I had learned from TedTalks and podcasts related to fundraising. I was so excited that they indeed worked.
I also organized the Winnipeg Lung Cancer Support Group with another patient to horn my leadership skills. We have monthly meetings and annual educational conferences. Recently, I started a newsletter, Manitoba Lung Cancer Voice, with the same patient, to connect the lung cancer patients in my province and the outside world.
I volunteered with the Canadian Cancer Society for Peer Support Program, helping newly diagnosed patients. That taught me how to talk to encourage and inspire lung cancer patients.
Lung cancer advocacy has two key elements
It’s not difficult for me to become a patient advocate, but I always wanted to be a research advocate at the same time. So I attended the training program of Patient Research Advocate by ICSLC. I believe that a bird can only fly with two wings. So for lung cancer advocacy, one wing is patient advocacy and the other is research advocacy.
I’m on the Research Committee of Lung Cancer Canada to review research grants and participate in various activities. Most recently, I’m just appointed to the ASCO Conquer Cancer Foundation Grant Review Committee for three years to review the grant applications. Research funding has a direct impact on lung cancer research. I always want to get on the grant decision committees since I was a professor in Canada, and grant review was a natural activity for me. I also long for reviewing grant applications for the USA to see the difference between the two systems.
The advocate I want to be
After three years’ “trial and error” it’s time I narrow down and focus my advocacy involvement. Being a Patient Research Advocate and fundraising are very interesting to me, and I have no intention to slow it down. Being the grant reviewer for the ASCO Conquer Cancer Foundation and Lung Cancer Canada is my focus because research funding is crucial for (lung) cancer research.
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