CURE spoke with Liz Salmi on connecting people with brain tumors via social media.
Resources and accurate information for patients diagnosed with a brain tumor can be hard to come by.
Liz Salmi, a survivor of a brain tumor, has been using the years after diagnosis to create a community and better awareness for the disease. Salmi has a blog where she records her journey and moderates a live chat on Twitter with her co-moderator Charlie Blotner specifically designed for those with brain tumors, called Brain Tumor Social Media or #BTSM.
Salmi and Blotner advocate outside the internet as well. Blotner is part of the patient advisory group for Stanford Medicine X and Salmi will be delivering a speech at their 2016 conference.
Tell me about your journey with brain cancer.
CURE recently spoke with Salmi to discuss her work in the brain tumor community and the creation of #BTSM.When I was 29 years old, I suffered a gigantic seizure and went to the emergency room. I got a scan of my head and it showed a large mass on my brain. I soon had brain surgery and found out I had a grade 2 astrocytoma, which is a malignant brain cancer.
How did you come up with the idea for #BTSM?
When you have a higher grade, doctors want to do multiple treatments, but when you have a lower grade, like I had, they don’t jump into treatment because they don’t want to damage you. Instead, the doctors “watch and wait,” to see if the tumor progresses over a period of time, which is horrible and scary. Within six months my brain tumor came back completely. I had another brain surgery and I followed that with two years of chemotherapy. I did have an option to do radiation but evidence doesn’t show that radiation and chemo combined for a low-grade brain cancer benefit one another, so I haven’t had radiation yet.On Twitter there are tons of growing healthcare support groups, which are usually tracked by hashtags. Instead of just saying #breastcancer, which could be about all kinds of stuff, the breast cancer community created Breast Cancer in Social Media, which they reduced to the acronym and hashtag #BCSM. One night, by following other people in the breast cancer community online, I stumbled across a chat happening using that hashtag. I was so amazed by this community that I was stumbling across for free on the internet where there was this live conversation going on. The conversation was specific to breast cancer, but as a cancer survivor, I definitely identified with the emotional, psychosocial concerns that the community has.
Despite not having breast cancer, the people within the #BCSM chat welcomed me with open arms. After commenting I wished something like this existed for the brain cancer community, someone suggested that I start it. Someone suggested I use #BTSM for Brain Tumor Social Media as the hashtag. Knowing not all brain tumors are malignant but there are over 120 different brain tumors, I thought that was the perfect acronym because people with brain tumors — malignant or otherwise — are dealing with a disease that’s very invasive, expensive and deals with your neurological functioning. I liked the idea of an inclusive group for everyone with brain tumors where we can all share our experiences. I tweeted the hashtag and it became official.
Afterwards, I wrote a blog post about it on my own website to inform people it existed. To be one person using a hashtag, you’re just kind of shouting in the dark. I kept tweeting about it and eventually I knew other people who had brain tumors who were using Twitter, too. In time, I ended up connecting with some other survivors or people currently going through treatment and we all started using it. It grew from there.
Can you tell me how things have changed for you since you were diagnosed?
Charlie Blotner, who has also been treated for a brain tumor, suggested we do what the breast cancer, lung cancer and many other cancer communities are doing: organize an official chat with a date and time. That definitely took a lot of coordination, organization and commitment. Charlie picked the date and time and the first chat was born in May 2013.The brain is a very complex organ and brain tumors can happen in any part of the brain. The side effects or psychosocial issues one person with a brain tumor has can be completely different from another person who has a different tumor in another part of the brain. The symptoms and side effects could be memory issues, personality changes, extreme migraines, lacking the ability to feed, walk, hear, control their bladder and anything else that the brain controls.
For me, I feel very fortunate that my brain tumor is in the parietal lobe, which deals with our sense of awareness of body and space, balance and coordination. My physical side effects are related to sensory issues. After my first and second brain surgeries, I had to relearn how to walk and balance. Half of my body has a decreased sense of touch which impacts my sense of balance and proprioception.
I’m constantly challenging myself to learn new things with my body. I’ve actually been fascinated by that physical component and the damage that has been done to my brain. I think I felt more empowered to challenge myself.
Psychosocially, being diagnosed with cancer, brain cancer especially, your friends and family immediately think it is a death sentence. I had so many people tell me they loved me and say goodbye. I wasn’t taking it in a bad way, I was just confused why everyone was expecting me to suddenly die. I didn’t feel like I was dying. Maybe that was denial, but I’m still not dead so I guess I was right.
Do you feel lucky to have tools such as social media?
As a person whose career is in the world of communications, I started to blog about this crazy experience that I thought would never happen in my life to help keep my friends and family up to date. You can find cancer blogs pretty easily, but it’s a lot harder to find brain cancer blogs, and even more difficult to find brain cancer blogs by people who are still alive today. It’s very scary. I have a lot of friends who I connected with through their blogs, but they go dark or they go silent and it makes me sad because unless a family member updates it with a post saying they passed, I don’t really know what they’re up to or if they’re still around. Even though I’m in definite survivor mode and advocacy mode, I also think it’s important to keep the blog going and let people know that I’m still alive.In the average city or town, there are cancer support groups affiliated with the local health system, such as hospitals or a certain organization. There are some cancer specific groups, like breast cancer support groups, but it’s very rare to find brain tumor support groups. I know in my city, Sacramento, there’s just one brain tumor support group that meets once a month on a Thursday night, whereas in the same city there are over 40 different breast cancer specific support groups that meet on any day of the week at various times in different areas around the city. That’s because there’s just more people diagnosed with breast cancer. They deserve those resources. When less than 2 percent of all cancers are brain cancers, and only 30 percent of those people are going to be alive five years after diagnosis, it’s harder to keep the momentum going.
What have you personally gotten out of #BTSM?
What do you hope other people get out of #BTSM?
Social media has proven to be a much more sufficient way of connecting to people. One of the magical things about #BTSM as an online community is it’s open all the time and it provides anonymity. We do a live, one-hour chat once a month that focuses on a specific topic, but you can tweet anytime using the hashtag and someone will see it and respond to you, creating a sense of support.As a participant, I have found my people. I found people who are willing to talk openly and honestly about their experience with brain tumors. As a co-moderator of the tweet chat with Charlie, I’ve felt like I’m providing something to a community that needs it. I can’t even express how good it feels to give back.I know what it’s like to be newly diagnosed, looking for resources and realizing that social support for this disease does not exist.
Support groups aren’t for everybody. People with brain cancer who have tried to go to support groups go to a general cancer support group and find they can’t identify with anyone in the room. Many people with brain tumors suffer from seizures and have their license revoked from the DMV, but people with other forms of cancer cannot relate to that. For people with brain cancer, their disease is taking away their autonomy as a human being. It is very important to be able to connect with people who are going through the same experience. I think any other disease community can attest to that. We all have things that make us unique.
You are an advocate for people with brain tumors. What are your goals in the next five or ten years in that role?
Having a platform on the internet allows people from anywhere in any stage of their disease reach out for support. It’s such a convenient way to connect with each other.I hope that #BTSM grows. I hope as new people are diagnosed, people get more comfortable using the internet for support. I hope our community continues to grow and more survivors step up and want to help, maybe even become future co-moderators. We hope to keep the momentum going.
I know that some of the other cancer communities might get a clinical moderator — in addition to their patient moderators — who becomes part of the organizing team. I would love to add a clinician to the group.
I want people who are newly diagnosed to find this as a resource. This isn’t something doctors tell patients about. People have to find us on their own. People come to us at different stages. Some got diagnosed two days ago and don’t know much about brain cancer, so they ask pretty basic questions. Others are currently in treatment and are there to complain. Then there are people who are post-treatment who feel lost and want to move forward in their life.
Charlie and I are both really committed the brain cancer community, the smallest population of cancer and even fewer survivors. Those who do survive suffer many physical side effects and cognitive issues that prevent them from going out and doing the things that we’re doing. Charlie and I are just a small fraction of our population and we realize we have a lot of responsibility to represent for people who can’t represent themselves because they’re not alive or they don’t have the capability to do so.
Editor’s note: BTSM chats occur the first Sunday of every month. The next chat is on August 7 at 6 p.m. PT. Use #BTSM to participate.