When did you initially find LUNGevity?
I joined LUNGevity in May 2015, after the demise of an online support community called RedToenail.org, a general cancer forum started by a radiologist in San Diego who got diagnosed with lung cancer and who was never a smoker.
The doctor vowed to paint a toenail red every year that he survived the disease. And he painted five toenails red before he passed away. I’m about to paint 16 toes in February. So, I have to figure out how to get 16 toes.
What was your experience looking for support?
For the first couple of years, I didn’t have a support group. That’s why LUNGevity is important to me.
I’m a retired soldier, and we don’t like to admit that we have depression. It’s very unsoldierly to admit that something is getting us down when we’re always supposed to be energized about charging into the enemy. So, it was very hard in the first couple of years of treatment to realize that I was depressed. And I was.
I’ve had a lot of lung cancer recurrences. Even nearing 16 years of survival, my oncologist will not use the word “cure” with me. So, I’m not out of the woods. But when I had that bout of depression, I talked about it with my general practitioner. He got me involved in professional counseling and suggested that I go out and find an in-person support group.
When you’re in treatment, just getting yourself up and going to an in-person support group becomes tough. You’ve got all these side effects, you feel lousy, and your life is reduced to a repetitive schedule. Well, the online Lung Cancer Support Community is my lung cancer support group. It’s where I go to address my anxiety with people who understand. Nobody on that forum is going to chide me for whether I smoked or not. All they care about is that I have the disease.
What do you want people to know about the Lung Cancer Support Community?
It’s a very important resource for folks for four reasons. First, it’s the only place where a person can go to learn how it feels to have lung cancer — including the diagnosis and treatment. We’ve got doctors and practitioners who know how to diagnose and treat it. But, not a single one of them knows what it feels like to live with it. You come to the forum to learn.
Second, we are a community on the forum; we answer questions based on our individual experiences as patients and caregivers about side effects, possible treatments, and a full range of things. We’re not physicians, and we do not give medical advice. But every one of us has a Ph.D. in living with the side effects and enduring treatments for lung cancer.
This is the place where you can go to learn about other treatments that you might want to speak with your doctor about. Plus, on the LUNGevity website there is a section called Lung Cancer 101, where we can link in our answers and specific aspects about the disease that have been vetted by LUNGevity’s Scientific Advisory Board and other experts. It becomes a very powerful thing.
Third, LCSC is a 24/7 resource. Many of us don’t sleep a lot because of side effects. Even at two o’clock in the morning, I’ve seen people ask questions, and they get answered. And we have an international footprint. So, there are people in Singapore who are awake when we’re sleeping. There are people in Great Britain who are ending their day when we’re beginning ours. A question comes up on the forum, and somebody picks it up almost right away. There are blogs that archive information that anyone can access as well.
Finally, the most important thing about the Lung Cancer Support Community forum is that we serve as evidence of survival. When I first got diagnosed, there were not a lot of options for treatment. But now, when you consider the future after that initial diagnosis, and you see me still sitting here banging out information and answers on the forum after nearly 16 years, you conclude that hey, people make it.
There are other people on the forum who’ve got eight years, 10 years, 12 years. We’ve got small cell survivors who have lived six years. So, just the fact that we are there and that we are alive is a real message for the newly diagnosed.
Why is the Lung Cancer Support Community important during the COVID-19 pandemic?
The best strategy for lung cancer patients is to never get COVID-19 or influenza. For me, this means staying indoors, which I’ve done since February.
There are a lot of us out there who are just COVID-cooped up like me. And so the Lung Cancer Support Community and the weekly Virtual Meetups have become my only tie to the outside world. This is important since this isolation has been hard because the disease itself is isolating.
Become a member of the Lung Cancer Support Community (LCSC) to get the latest lung cancer information and notices of lung cancer events and advocacy opportunities that fund LUNGevity’s lung cancer research.
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Tom Galli is a 16-year lung cancer survivor and a long-term LUNGevity LifeLine mentor. His career in the United States Army and the corporate world spans 45 years and includes a diverse background in civil engineering; tank-automotive system design, development and manufacturing; contracting; program management; and productivity and business process re-engineering consulting.