You might have trouble finding a lung cancer support group in your community. However, the Internet makes it possible to find people with lung cancer all over the world who are engaged in critical thinking about their own treatment, and who are advocates for better screening and care. You never have to be alone; even at 3 a.m., someone, somewhere, is also up worrying about their lung cancer and willing to virtually commiserate.
It will take several posts to explain various ways to connect online, but I’d like to start with Twitter. Many people don’t understand Twitter, or think it’s just for gossip about celebrities. It can be confusing, especially if, like me, you grew up in an analog world. However, it’s actually ideal for helping people with lung cancer and our advocates find and support one another.
I discovered the usefulness of Twitter in 2011 during Hurricane Irene, when I realized it was the best way to get weather information during a power outage. Information often shows up on Twitter before it appears anywhere else. Unlike Facebook, it refreshes quickly, and doesn’t devour the battery power in a smartphone. Lung cancer is not unlike a weather emergency: you may want information when wireless service is nonexistent or uncertain (say, on the train or in your doctor’s office), and you may want your information digested into 140-character “headlines” because you don’t have the time or energy for long or dense pieces of writing.
When you join Twitter, your first task is to select a few people to “follow.” This will give you a customized news feed. To start, I recommend following these people and groups:
- @LungCancerFaces (Faces of Lung Cancer). The person behind Faces of Lung Cancer is Deana Hendrickson, whose mother died of lung cancer. Even if you only use Twitter to read Deana’s tweets and not for anything else, it is incredible what you will learn. Through Deana, you will eventually meet engaged patients, doctors, nurses, social workers, and more. Introduce yourself to Deana or “retweet” one of her Tweets, and she will invite you to be part of lung cancer “tweetchats” in which all kinds of people who care about lung cancer discuss important issues via Twitter. The tweetchats can be difficult to follow at first (everyone is “talking” at once, and the scientific terms come fast and furious) but are also exhilarating.
- @TeamInspire, @cancerGRACE, and @smartPatients. These are the Twitter accounts of three online communities dedicated to “patient engagement,” or self-education and self-advocacy by people with serious illnesses. All three encompass smart, substantial communities of lung cancer patients and caregivers.
- @JackWestMD, (Howard Jack West, MD), a thoracic oncologist at Seattle’s Swedish Cancer Institute and the founder and president of cancerGRACE. He tweets all kinds of links to current research, as well as the occasional funny quip about parenting.
- Your hospitals or cancer centers probably have Twitter accounts, and these can be fun and informative to follow. I like knowing what initiatives my cancer centers are promoting; plus, I’m always entertained when, on a clinic day at Memorial Sloan-Kettering, I tweet about the slow elevators or my hectic commute, and Memorial Sloan-Kettering tweets back: “Hi, Beth! We’re working on the elevators. Hope you are feeling good today.”
I follow many people involved in lung cancer research, education, and care, but this handful of accounts is where I would recommend starting. Many of my relationships on Twitter are specialized to my particular situation (for example, I especially follow women with the ROS1 mutation, which I have). You can follow me if you want, at @IEStroud – I also tweet about graduate school, race and gender issues, and religion. You’ll gradually find folks who inform, inspire, and entertain you; some may become your friends.
You don’t even have to tweet; it’s possible to use Twitter as a running ticker of headline news that you simply read. If you do tweet, upload a picture and create a profile with a few words about yourself so that people know you’re a real person and not a robot, and remember that everything you post on Twitter is potentially visible to the entire world. The public nature of Twitter is great because it helps you meet new people who share your interests, but there are also risks, so wade in slowly! If you tweet about lung cancer, use the hashtag “lcsm,” which stands for “lung cancer social media.” This way, other people who are interested in lung cancer will see your tweets and perhaps reply.