Activating a Community of People Living With Lung Cancer

November is Lung Cancer Awareness Month, and although lung cancer is the leading cause of cancer death in the world, the disease has long been stigmatized, leading to a sense of isolation for people already struggling with the considerable upheaval of a lung cancer diagnosis. Many living with this disease have said that connecting with others who also have a lung cancer diagnosis can inspire them to learn to “live with lung cancer.”

LVNG With Program

Through a new program called LVNG With (pronounced “Living With”), AstraZeneca, with the partnership of three leading lung cancer advocacy organizations (Bonnie J. Addario Lung Cancer Foundation, Free to Breathe, and Lung Cancer Alliance), are activating a community of people living with lung cancer and their loved ones, to share their experiences and inspire one another. More than 100 people with lung cancer and their loved ones contributed to the development of LVNG With by sharing personal stories about their emotional journeys with lung cancer and their everyday lives.

Richard, who was diagnosed with lung cancer in 2004, conveys a sentiment that we’ve heard from countless people who are living with lung cancer and who contributed insight to this program: “I never imagined myself being an advocate for lung cancer. But I really do feel I need to be a voice. There need to be people who can speak out for lung cancer and give other people hope.”

Initial elements of the LVNG With program include a web site (www.LVNG.com), printed quarterly newspapers and live events, all intended to activate and connect those within this underrepresented community. We intend to add social media elements, such as Facebook and Instagram,  to continue to activate a community of people living with lung cancer and their loved ones. These channels will serve as another forum to share personal stories, posts, and images, and to invite people to post their own.

Following are excerpts from the personal stories you can find on at www.LVNG.com.

Dann’s Story

Dann, who was diagnosed with lung cancer in 2006, shared the following on Emotions:

“It’s important to do things that you feel give you some control. It feels totally out of control to be given this diagnosis, but there are things that are within your control.

“Exercise is one of those. It’s a mood elevator. It also is helpful to do all of the things that you can do to influence your treatment. Choosing which treatment provider that you have, choosing who you are going to involve in treatment.

“I’ve found that on the one or two occasions when I went to appointments by myself, it was much more stressful. So having other people share the experience with you is important.

“I feel a lot more deeply and I have a lot more awareness of my feelings. My gratitude for everything around me has grown exponentially. Stopping to smell the flowers is not just one of those clichés. I stop and smell the flowers, I stop to appreciate a couple of words that my secretary said when I walked by or that the sun is out today.

“There is so much more that I appreciate.”

Deena’s Story

Deena, who was diagnosed with lung cancer in 2012, shares the following perspective on Friends and Family:

“My relationships have changed, especially with my children. They saw a crack in Mom that was unexpected. I’m more fragile now than I was before. I was always the tough one, the disciplinarian. I had no health issues at all. The diagnosis came out of the blue for all of us.

“Our grandkids live a bit further away and we used to not see them as often, but now we won’t miss out on anything. There was a birthday party for our granddaughter and because her brother came down with a fever everyone else decided to stay out of the ‘sick house.’ We showed up anyway. I wanted to be there for every birthday party she wants me to attend.”

 

If you know someone who is facing a lung cancer diagnosis or may wish to participate in a live event in 2016, please share LVNG.org as a resource. We plan to add new stories to the LVNG With web site on a regular basis. If you wish to contribute a story, sign up to keep in touch.

 

John McCarthy is VP, Global Commercial Excellence, AstraZeneca