Tag Archives: lung cancer support groups

A gentleman known as stageIVsurvivor

This particular guest post is actually the distillation of a telephone conversation that I had with my friend known by our online community as stageIVsurvivor, but more informally as G. When I became part of the INSPIRE community four and a half years ago, G was already a well established member, and practically a legend.

Diagnosed on November 30th, 1999, G’s lung cancer had metastasized to his brain. Nonetheless, his oncologist was confident that his cancer could be cured and remarkably, after a combination of surgery, chemo and gamma knife, G has been out of treatment and cancer free since November of 2000.

Prior to his diagnosis of lung cancer, G smoked. And he still does.

I will be the first to admit that I have had some trouble with this fact, as it flies in the face of all reason. Forget stigma for a moment; it just seems like a good idea to stop smoking if you have lung cancer. However, I am also adamant that one of the best ways to combat stigma is for smokers and former smokers to stand tall and refuse to be bullied or shamed into believing that they somehow deserve a diagnosis of lung cancer. No one deserves this or any other disease, and I was pleased when G agreed to share his story.

After our conversation, I came away with a much greater understanding of who this complicated individual is. Certainly, as a long term survivor of stage IV lung cancer, he provides incredible inspiration. In our forum, he often injects a dose of humor. Occasionally he can come across as a real curmudgeon, and G and I have had a dust-up or two. However, if you were to ask many of those he has helped behind the scenes, they would describe a generous and caring individual.

I was curious as to why someone who had not been in treatment for 12 years would be drawn to a support group for lung cancer survivors.  “I’m just one of the very, very lucky ones…it is my responsibility to do what I can for other people.” G emphasizes that his continued “participation on Inspire is only to help those still suffering and their families“.

Crediting an amazing medical team for his successful treatment, G is on a personal crusade to educate others about the importance of “proper treatment, proper direction and proper insight“. He abhors complacency, and often urges patients to seek a second opinion.

As for his own unconventional approach to survival, G is blunt. First, about the fact that he initially faced his diagnosis with anything but optimism. “I was angry and had a horrible attitude“. Unfortunately, G also ended up addicted to pain medication, and at one point just wanted to give up. However, he experienced a moment of clarity, realizing that he ‘wasn’t dead yet‘. Even while “lamenting the fact that I wouldn’t be around to raise my sons” G acknowledged that he “wasn’t doing a good job then“. He went into rehab and beat his addiction to the pain meds.

And so why does G still smoke? Certainly, there was a sense of “the horses are already out of the barn“–the damage done. But it would seem that the real reason is that having beaten both drugs and alcohol (G acknowledges that he has an addictive personality), he has found nicotine that much more difficult to kick. He’s giving e-cigarettes a try, and if they don’t do the trick, he may try something like chantix. Of course, given his personal stuggle with addiction, he is leary of any chemical intervention.

At any rate, on November 30th, G will mark his 13th year of surviving stage IV lung cancer. He’s a very lucky man, and he knows it.

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.