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READ MOREPublished on March 14, 2024 in In the Community
Patients living with a brain tumor and their care partners often encounter isolation and loneliness throughout their brain tumor experience. In the wake of a diagnosis of a rare disease like a brain tumor, it may seem like no one understands what you’re facing. You can find community with others who truly understand and gain connection and friendships at a time when you need it most.
“My experience in the brain tumor community is summed up by the slogan many of us have adopted in one form or another: We are the greatest family that none of us ever wanted to join,” said Adam Hayden, who co-leads Brain Tumor Support Conversations and serves on the National Brain Tumor Society’s board of directors. “I am fortunate to have a very close partnership with my wife, and we each are close with our extended families. Despite the love I give and receive from many people in my life, no one gets me like the brain tumor community. We’re connected on a level that others just aren’t.”
Through our connect programmatic strategy, the National Brain Tumor Society (NBTS) aims to unite the brain tumor community and foster connection so that no one is alone in their experience.
“The mission of the National Brain Tumor Society is super important to me because as a newly diagnosed person 15 years ago, I didn’t know where to go,” said Liz Salmi, a person living with a brain tumor and a former NBTS board member. “Living with a brain tumor or going through treatment is a lonely experience. We have brain surgery in an operating room. We see no other humans living with brain tumors. Our treatment is often through oral chemotherapy drugs that we take at home. We don’t have what I used to think of as a more traditional cancer experience where you go to some place and receive treatments in a room of other people living with cancer. Finding ways to connect with other people who are dealing with this disease [is] crucial. With [the] National Brain Tumor Society, I found that community, whether that’s through an in-person event [or] virtual support groups.”
Not sure where to start? Check out 11 ways to find community through NBTS below.
Brain Tumor Support Conversations is an online support group run by the brain tumor community for the brain tumor community. This group is attended and run by patients and care partners who have had firsthand experience with the challenges and effects of a brain tumor diagnosis.
“I absolutely love participating each month in the Brain Tumor Support Conversations because everyone seems like me,” Kymberlee B. said. “It’s not like going to the local pool where everyone is enjoying life and appears carefree, while I feel like an alien because none of these people experience what I’ve experienced. Brain Tumor Support Conversations is like a family. I could mention something, and everyone’s head is nodding. I’m like, ‘Wow, everyone gets me.’”
On the third Sunday of each month, patients and caregivers come together to have honest, supportive discussions about the feelings and emotions that accompany any aspect of the brain tumor experience.
“I’m a fixer,” Liz P. said. “I cannot fix that Julio has brain cancer, which is a difficult pill to swallow sometimes. It’s really helpful to talk to people who understand exactly what you’re dealing with at Brain Tumor Support Conversations, even if they don’t have advice for you. Because even with different types of brain tumors or ages, there are certain things that we all deal with.”
This monthly program allows patients and care partners who may be unable to attend an in-person support group at their hospital, for example, to find community with others who have a similar diagnosis.
“After diagnosis at 34 years old, in a medium-sized city in the Midwest, there just aren’t many support options,” Adam said. “Add to this my mobility impairments following surgery, my lifeline to the brain tumor community is and was online. Regardless of a patient or care partner’s location geographically or accessibility concerns, virtual groups offer patients, care partners, and families a way to connect with the community. We bring the community to you!”
Participation in Brain Tumor Support Conversations has even led to lasting friendships with others beyond the monthly meeting.
“Within the context of the support group, we’ve witnessed many ongoing friendships develop from the group,” Adam shared. “We often have requests for participants to swap contact information, and we make sure to get consent before doing so. We have several folks who became friends after meeting each other in the group setting. This is so rewarding for everyone!”
Whether you walk, run, wheel, or ride, the National Brain Tumor Society hosts events across the country to fundraise, spread awareness, and find community together.
“It’s nice to be in the community of other brain tumor patients at the walk — hear people’s stories, offer support, and receive the support, too,” said Craig F., who has glioblastoma. “The need for research is urgent. I feel like I have a part to play in this, so I try to raise funds and stay involved with the community.”
Seeing other patients in gray event t-shirts at the starting line or on stage at each event and bonding over a shared experience can be quite meaningful to participants.
“I remember the first walk we did right at the one-year mark,” said Shauna W., whose son Cole has pilocytic astrocytoma. “I remember him looking around at all these people who have experienced something similar. He felt like he belonged to something greater than himself. These people knew what it was like to go through what he’d been through — similar scars and similar surgeries. It meant the world for him to be able to experience that. So that’s why we walk. We walk for him. We walk for others who can’t, and we walk for those still fighting. It means everything to us.”
The events also encourage teams to invite their extended circle of family, friends, colleagues, classmates, and more to join them at the annual event in honor or memory of a loved one.
“In my father’s memory, we formed the Jalisco Jalapeños team in 2011,” Lisa C. explained. “Each year, we honor his life with a big family celebration [at Race for Hope DC]. We fundraise to support others currently in the battle and to walk alongside those who experienced the same heartache our own family went through 16 years ago. It’s also a way of continuing to process and grieve. I know that it would make him happy to see his children, granddaughter, nieces, and nephews come together every year to continue the fight that he started.”
Join advocates from across the country to make a difference at Head to the Hill, held every May in Washington, D.C. After a day of in-person training where participants connect with advocates from their state and beyond, attendees meet with their members of Congress and staff on Capitol Hill to advocate for increased brain tumor research funding and address other critical issues affecting the brain tumor community.
“We were three sheepish guys who had no idea what to expect,” said Shawn C. about his first Head to the Hill experience after his mother passed away from glioblastoma. “We walked into the big ballroom and sat at our table with a couple of advocates from New York. We shared our story with them, and I remember the woman saying, ‘I get it.’ A weight just lifted off of my shoulders. It hit me that we’re in a room full of people across the country and all spectrums of life, but we all share this one thing in common. What NBTS does goes beyond advocacy work — they’re bringing the community together.”
When you register to attend this in-person event, you’ll not only advocate for important policies impacting patients with brain tumors and increased research funding, you’ll also find community.
“For me, [attending Head to the Hill is] important personally, as a patient living with a brain tumor,” said Jeremy P., who has oligodendroglioma. “It’s not just about going and talking to legislators about research and treatment. It’s about the community and being with others who get it. I’d encourage other people to come because you’ll find community here. You might feel alone where you are, whether you’re a caregiver or a patient dealing with this, but you’ll find those who get it.”
Put meaning behind your miles and find connection with other members of the brain tumor community when you become a member of a Gray Nation Endurance (GNE) team. As NBTS’s official endurance program, individuals around the country can apply for a charity team to a race — distances range from 10 miles to a full marathon — or select a race or endurance activity of their own choosing.
“I could tell we’ve all been impacted,” Karen said of her GNE teammates. “We all understand what it means to be in this little community, and it felt like such a safe space. As a 25-year-old caregiver, I am grateful to my entire community, who have shown up the way they can, but any traumatic experience can feel quite isolating sometimes. It felt validating and powerful to be part of a group that really understands the depth of your experience.”
Runners on a GNE race team will receive an official race entry, GNE swag, a personal fundraising page and tools, a Facebook group for the team, and monthly Zoom calls to find community and talk training tips.
“Even though we were all scattered from California to New York, it was easy to communicate and get to know people,” said Kayla S., who has acoustic neuroma. “It was so worth it because, in a world where you feel so alone, it felt like family. You feel more connected to them because there is that commonality of brain tumors and why we’re motivated to run and bring awareness.”
In addition to Brain Tumor Support Conversations, NBTS hosts a monthly support group called Grief Support Conversations for bereaved community members to find community and share their experiences with grief among peers under the guidance of Holly Gainsboro, a grief educator and support specialist.
“Brain cancer really isn’t like anything else,” said Anna D., whose brother passed away from a grade 3 anaplastic astrocytoma. “It’s a unique and extremely isolating experience. I have been part of NBTS’s Brain Tumor Support Conversations and their Grief Support Conversations. The community has shown me that I’m not alone in this experience. Our situations may be different, but we all know the very specific struggles that come with brain cancer.”
Holly’s grief after her late husband, Steven, passed away from glioblastoma led her to sign up for NBTS’s Carolina Brain Tumor Walk & Race. She built lasting relationships participating year after year, ultimately becoming chair of the event. Today, she facilitates Grief Support Conversations and helps others navigate their grief.
“Grievers feel so isolated and alone in their grief because of the misinformation we’ve been given with the ‘don’t feel bad or be strong or it just takes time’ messages that we hear time and time again,” Holly shared. “Other grievers fear that they’re going to be dismissed when they talk about their pain. A grief support group gives you space for one hour a month to feel yucky and heard. You get to share your pain, and you get to share your story. You get to talk about your loved one without anyone saying, ‘Oh, but…oh, at least…don’t feel sad.’”
Grief Support Conversations welcomes anyone who has lost a loved one to a brain tumor on the first Thursday of every month and offers participants the space to be heard while also providing tools and resources to support individuals through their grieving process.
Foster community in your area by starting a Fundraise Your Way fundraiser that unites those affected by brain tumors while fueling the breakthroughs we need to find a cure. By choosing a fundraising activity that suits your passion and talents, you can create an opportunity to bring family, friends, and acquaintances together to support NBTS’s mission of conquering and curing brain tumors — once and for all.
“The annual events, like our golf outing, allow us an opportunity to bring the community around us together to support our mission,” said Rich D. and Alex B. “The growth of the [Childhood Brain Cancer Research Collaborative Golf Tournament] over the past few years has allowed us to truly impact the research being directed toward pediatric brain cancer and to impact local families in our community that are navigating a diagnosis. What stemmed from a personal mission of our team members has transformed into an event [that] continues to deliver on our mission, year after year.”
Whether you host an event — like a happy hour, a 5K walk, a yoga session, or a golf outing — or you use your talents to fundraise, you can bring people together and find community. Pat S. began tin punching at a local community center after her brother passed away from glioblastoma. As her talents blossomed, she started selling her work at local art shows and increasing brain tumor awareness in her community. She donated all of the proceeds from her sales to NBTS.
“I initially saw fundraising for cancer as only 5Ks, 10Ks, benefits, and raffles,” Pat explained. “Having NBTS recognize selling my artwork as a fundraiser, I am grateful that I can create a lasting legacy in my beloved brother’s memory both with my art and the money it raises.”
Sometimes a simple email or call from someone who cares can make all the difference in a time of isolation. NBTS’s Personalized Support and Navigation team responds to outreach from patients with brain tumors and care partners to answer questions and provide quality, unbiased information, resources, and more.
“Whether talking with someone who is newly diagnosed, facing a recurrence, navigating survivorship, or grieving a loss, I am dedicated to providing comprehensive support to empower our community throughout their brain tumor experience,” said Katherine Pahler, RN, who is the organization’s Patient Navigator. “There is no question too big or small. It doesn’t matter where you are in your experience. We are here for a conversation.”
Join NBTS’s Meditation Mondays on the second Monday of each month for meditation designed specifically for patients with brain tumors and their loved ones. While this monthly virtual meeting does not have back-and-forth conversation like NBTS’s other virtual programs, it does offer a space where you can know that you’re not alone while developing skills that you can tap into when you’re experiencing moments of overwhelm and fear.
“Meditation is a centering and calming approach to the hectic day-to-day challenges for caregivers and those of us going through treatments, side effects from surgery, and the life-changing impact that brain cancer causes,” Louise H. shared. “Each month, we look forward to sharing time with Tori Best, the host of Meditation Mondays, to decompress from the anxieties of everyday stress with a group sharing the same unfortunate disease.”
Do you have a favorite social media platform? You can find NBTS on Facebook, Instagram, LinkedIn, TikTok, YouTube, and X (formerly known as Twitter). There, you’ll find engaging content and conversations taking place in the comment sections. At least once a month, there is also an invitation to share your experiences on a specific subject matter.
“Social media, with all its flaws, can be a really great way to connect to other patients or care partners,” said Lisa O’Leary, who is one of the Brain Tumor Support Conversations facilitators. “There are monthly events, discussions, and other virtual ways to interact with the community. Some of my best friends today are people I initially met through the online brain tumor advocacy community.”
While NBTS does not facilitate the monthly Brain Tumor Social Media chat, there are many community members who participate each month.
“I’d say other ways to find community are within social media settings, like the Twitter Brain Tumor Social Media (#BTSM/@BTSMChat) community or in Facebook groups,” Adam said. “There is a sort of ‘buyer beware’ caveat with online chats and groups. The information may be moderated by administrators, but the information is not often medically vetted, so that is something to look out for.”
Whether you purchase NBTS merchandise from our store or receive a t-shirt as part of your involvement with NBTS at an event, wear your swag out in public if you’re comfortable doing so. You’ll be surprised how many people might stop you to share their personal connection with brain tumors and show you that you’re not alone in your experience.
NBTS invites patients, care partners, and their loved ones to share their stories on our website. You can complete a form to tell your story or explore already published stories to see that there are others going through similar circumstances.
Remember, finding the right community support is a personal journey. Many community members have first connected with NBTS through a program or event, formed friendships with fellow participants, and then found other ways to engage with the community.
Here are a few tips to help you start making meaningful connections and find community.
TAGGED WITH: brain cancer, brain tumor, brain tumor community