When you have lung cancer, not every cancer support group will be helpful. Lung cancer is just so much deadlier, on average, than other common cancers like breast and prostate cancer, and tends to be diagnosed when it is so much more advanced. It also feels invisible. Everyone seems to know about breast cancer, but few know how common lung cancer is, or that even young people and nonsmokers can get it. That reality shapes your experience of it.
This is not to say that you won’t meet people with non-lung cancers with whom you have a lot in common and who really understand what you’re going through. They are out there. It’s very easy, though, when you have lung cancer, to feel out of place at a support group meeting that isn’t specifically designed for people with lung cancer and/or an advanced-stage diagnosis. No one going through cancer is having an easy time, but sometimes it can feel like the room is full of cheery survivors living beyond their illness, when you really want to talk about your fear of dying.
A social worker at Rutgers Cancer Institute of New Jersey mentioned to me that a couple of other women with children were coming for lung cancer treatments and were having a rough time. She helped us schedule a time to get together for coffee. We only met that one time, but I found it helpful. I am still in touch with one of them. (It gives me hope that we are both still alive!)
I sought out old friends that I thought might be particularly good company in such a frightening and uncertain time. Back in the 1990s, I was involved in AIDS activism in New York. I’d dropped out of touch with those friends, but had recently reconnected with a few. The experiences we had shared fighting AIDS together – learning about new and experimental drugs and fighting for more research and access, campaigning for better care for people with AIDS, and most of all working side by side with people who were facing this illness in their own bodies and treating them as authorities, not as victims – made those friends really great lung cancer companions. They offered things like places to stay, and rides home from New York when I was too weak to take the train. They also understood the mix of anger, fear, and scientific curiosity that had become my emotional reality.
Another person I needed and wanted to see was my childhood friend whose mother had died of cancer when she was eight, the age my daughter is now. We had remained close friends but had never talked much about her mother, who died before we met. Now I wanted her to tell me everything. What was it like when her mother was dying? What did people do that was helpful for her, and what did they do that was not helpful? What was it like growing up without her mother? This friend actually came all the way from California for a weekend. She filled our refrigerator with food, straightened up our kitchen cabinets, and did special fun things with my daughter. Meanwhile she let me sleep as much as I wanted, and only talked when I wanted to talk and had the energy for it.
Not everyone will understand what you are going through. But some people really will.
As usual, excellent blog, Irene. Thank you!
My mom never talked about dying. It is one of the things that I regret about the time before she died. I know that she was trying to protect us, and she was trying to protect herself from the idea that she might die. However, I think it could have been helpful to talk about how we are going to deal with her being gone. I have siblings who are now 11 and 17 (our mom died in 2011, so they were 8 and 14 at the time?). From what I know, she never assured them that there would be people to take care of them after she was gone, or explained/reassured that life would go on.
I can’t tell you what the right words are, but if it’s appropriate for you and your family, that’s something that I wish would have happened during my family’s journey.