Daily Archives: July 24, 2009

Connecting with others who have lung cancer

When I was first diagnosed with lung cancer I felt incredibly isolated. Everywhere I looked I saw seemingly healthy people.  I felt that none of them could possibly comprehend my fear, my sadness and my anger.  I desperately wanted someone to talk to who was going through the same things that I was.

At the hospital I was surrounded by others with cancer, but seldom would any of us speak to each other.   On my floor, I was almost always one of the youngest patients and this only added to my feeling of being alone.  On two different occasions I reached out to women with very similar diagnoses whom I had read about in the media.  I never heard from one of the women, and although the other woman did contact me, she didn’t carry through on a plan to meet for coffee.  I was leary of joining any support groups, and this only affirmed my position–I was too raw to weather personal rejection.

When I learned that my cancer was terminal, that sense of isolation only increased.  And then, quite by accident, I stumbled upon that world of support I had been looking for.  I was researching recurrent lung cancer on the internet and I came across the Lung Cancer Alliance Survivors Support Community.

It is an international forum where people with lung cancer as well as their caretakers can post questions and initiate dialogue with the other members.  It is available 24 hours a day.

In the beginning I would log on but only read the posts and comments. Eventually I joined the “conversation”.  Soon it became a daily habit that I refer to as my devotional.   It is a safe and nurturing place to share experiences and concerns. Participants are generous with their support and their knowledge, and no question is considered too frivolous (nor does it fail to evoke responses).  The only two subjects which seem to consistently provoke controversy are those concerning smoking/nonsmoking status as well as the amount of publicity and funding that goes to breast cancer (more on both of those subjects later!).

By participating in this forum I have enriched my knowledge about lung cancer. I have also been able to use my own experiences to get information out there to those who might not have it (get your tumor tested for mutations!)  I have made friends and have marveled at the opportunity to have dialogues with people all over the world.

For those of you who are interested, log onto the Lung Cancer Alliance site (an advocacy group dedicated to survivors of lung cancer) at:


Scroll down to LCA Survivors Community and press join.  It’s that easy and the degree to which you participate is entirely up to you.   In my case, joining this community has not only addressed my sense of isolation, but has made me feel more empowered.