How Should I Talk About My Lung Cancer?
Last updated: May 2020
I’m not a social person but it doesn’t bother me. When I was diagnosed with lung cancer, I became even more isolated. One reason is that I didn’t know how to talk to people about my cancer. I didn’t need or want people to say “I’m sorry” or “what can I do for you”. Nothing they did could help me anyway, at least that’s what I thought. Later, I also noticed that my colleagues didn’t know how to talk to me either. Maybe they didn’t want to make me upset or maybe they were nervous about saying the wrong thing.
I eventually joined various Facebook groups for Lung Cancer patients and their families. There, I found I was very comfortable to talk to other cancer patients and caregivers online. It was unbelievable – I could talk about my own cancer. But still, how can I talk comfortably with people that don’t have cancer? Should I lead the talk when I speak to healthy people?
How to talk to healthy people?
I’ve been going to the Reh-Fit Center (Winnipeg, Manitoba) since last September. The Reh-Fit Center is an integration of medical, rehabilitative, and fitness services for people of all ages. There is a big gym with multiple rooms and many people doing their own things. In the beginning, I was super quiet and walked the track by myself. After 6 months, there were a handful of people approaching me to talk. They all said I inspired them (probably because I used a walking pole to walk, 5 times per week for at least 1 hour each time). They all thought I had a stroke, and when I told them I have a lung cancer metastatic to my brain, they seemed so shocked, even embarrassed, that they asked. They seemed to be at a loss of words and regretted asking. From my perspective, I didn’t know what to say next. We would all just leave the conversation silently as if nothing happened.
Take charge of the conversations
Recently, I decided to talk to people, especially healthy people, about my lung cancer. Firstly, whenever I talk to people, I have to make sure I feel comfortable about my cancer. This is not easy, but the purpose of talking to people about lung cancer is bigger and more important than any awkwardness I may feel. Secondly, I must not just passively tell people about my cancer, rather I have to focus on positive experiences from my sickness, drugs/treatments, and side effects. For example, I focus on the fact that I got lung cancer 4 years ago, and due to the targeted therapy, the cancer is controlled simply by 2 pills, with no side effects!
In addition, I tell people about different treatment options, like immunotherapy, targeted therapy, and newly developed chemotherapy. Most importantly, I tell them that cancer is not a death sentence anymore. We are so close to turning the lung cancer into a controllable chronic disease. I also tell people about the importance of exercising using myself as an example. Without exercise, I wouldn’t be able to walk and be as independent and mobile as I am.
When I tell healthy people about my cancer, I no longer feel depressed and embarrassed. Maybe because my attitude has changed, the healthy people are surprisingly delighted and curious about my cancer journey. Some even tell me of their own cancer journeys. I feel really connected with other cancer survivors and healthy people, alike.
“Go out and tell someone”
The above words were from Harvey Milk1, a well-known advocate of the gay rights movement. It’s resonated with me a lot. I feel some patients, like me, hide their lung cancer due to stigmas and being ashamed, embarrassed, and isolated. At the same time, healthy people know little about lung cancer. Ironically every 1 in 2 persons in North America will have some type of cancer in their life time, and lung cancer is the No. 1 cancer killer. I feel it is the time to “Go out and tell someone” about (lung) cancer.
I have made a promise to myself: talk to one person each week, healthy people or cancer survivor, about my cancer (keeping in mind I’m still not a social person).
Beside manner matters! What has your experience been?