Reflecting on My Lung Cancer Advocacy in 2019

It is unbelievable that 2019 has passed. This year is 4.5 years since I was diagnosed with lung cancer. I cannot help reflecting on my lung cancer advocacy in 2019.

Lung cancer advocacy in Canada

I am very proud to have several initiatives. Together with another patient, we established the Winnipeg Lung Cancer Support Group in April 2019. We have monthly group meetings to have seminars and to discuss different issues related to lung cancer. The attendants have been increased steadily in spite of the harsh winter. I was surprised and moved to see that we were getting ever closer. I wrote a post after each meeting to share the information with other patients on Facebook.

I was one of the organizing committee members of Winnipeg Lung Cancer Education Evening with more than 70 patients attended. We had oncologists and social workers talked about different topics, especially I was instrumental in having five lung patients and one caregiver sharing their experience with audiences. The conference was successful.

I am working with Lung Cancer Canada on a newly created Research Committee, which is responsible for identifying and evaluating lung cancer research and grant opportunities as well as advising the Board of Directors on research objectives and strategies.

I am a Peer Support for the Canadian Cancer Society for 2019. I have talked to 21 newly diagnosed lung cancer patients. I used this opportunity to share with the patients about knowledge and hope. I also got first-hand information from other provinces around Canada about molecular (biomarker) testing, which I am very passionate about and tirelessly working to spread awareness.

Looking outside Canada

I attended the IASLC/World Conference of Lung Cancer in September 2019 in Barcelona, Spain with a Patient Advocate Travel Award. I met most of the patients and caregivers. I had known several oncologists online. Through this conference, we reached the individuals and talked to them.

I also attended the International Conference of Lung Cancer Survivorship in April 2019 in Washington, DC. There were 450 lung cancer patients and caregivers participated in the conference and several well-known oncologists and sergeants. Attending the conference was an eye-opening experience.

I wrote 2 or 3 articles for LungCancer.net every month and connected with community members. It gives lung cancer patients a voice. More importantly, my articles gave me a way to communicate and connect with others. The traffic on my blogs had increased since I publicized my blogs this November during Lung Cancer Awareness Month.

Awareness and fundraising go hand in hand

In 2019, I raised $2,870 CND for research at Lung Cancer Canada, and $4,300 (USD) for ROS1ders (GO2 Foundation for Lung Cancer, total $21,441 USD for two years). I wrote several articles about my fundraising activities.^1-4 I just realized that AWARENESS and FUNDRAISING go hand in hand.

Support on Facebook, Twitter and WeChat

My advocacy work started from Facebook, Twitter and WeChat*. The first Facebook group I joined is ROS1ders. There are about 500 ROS1+ Lung Cancer patients. This group is the most serious and educated that I know.

I’m also involved in ROS1+交流群 through WeChat (Chinese ROS1+LC Group, about 460 patients and caregivers). This group is the most lively and active. They are a resilient and fearless group who is very knowledgeable and learns from each other. I have so much respect for them. Canadian Lung Cancer Support Group is a combined group. I developed some special bonds with Canadian patients.

I followed a group of oncologists, sergeants, and radiologists on Twitter to stay up to date on the progress of treatments. I also follow research centers or institutes to learn about new lung cancer findings. Facebook, Twitter, and WeChat are essential sources for me to get lung cancer knowledge.

Long-distance travel

I have to talk about traveling for advocacy. Long-distance travel is always a concern for advanced lung cancer patients. In 2019, I went to Barcelona, Washington DC, Las Vegas, Toronto, Vancouver, and Victoria. I was cautious about listening to my body, talked to my oncologists and had all the tests beforehand. My advice is that we have to live a little. As far as we can handle physically, do whatever you want.

Hope for 2020

I am proud of all the advocacy in 2019. I am incredibly hopeful for the year 2020.

*WeChat is the Chinese version of messenger on Facebook.