#BTSM: Brain tumor Twitter chat connects survivors and caregivers

ELIZABETH WHITTINGTON
PUBLISHED: MAY 22, 2013
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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Each Sunday evening at 9 CT, brain tumor patients, survivors and advocates meet up virtually on Twitter for a moderated chat on issues that affect them.

Similar to the #bcsm (breast cancer social media) movement that has drawn breast cancer survivors together from across the globe, the brain tumor community created #btsm just recently. In addition to #braintumorthursday, where tweets raise awareness of brain tumors, the #btsm chats hope to raise awareness, but moreso to provide a strong support system for those affected by brain tumors, including caregivers. (Ironically these chats occur for one hour a week, but the hashtags are now being used at all hours of every day.)

This Sunday, the #btsm topics include relationships, the impact on school, and side effects of treatment. The tweetchats are moderated and will ask a series of questions throughout the hour-long chat. Because of the number of retweets and late-comers to the chat, each question and answered is labeled to cut down on the confusion. Questions are labeled T1, T2, T3... with answers labeled A1, A2, A3, etc.

T1: How has a brain tumor affected your relationships with others? (patient, parent, partner, sibling, children, friend perspective)

T2: Education impact (dropping out, taking fewer classes, extra time, extensions, change in student-teacher relationship)

T3: Side effects because of treatment (craniotomy, chemotherapy, radiation)

With just a handful of questions to occupy the hour chat, users are given time to answer questions and interact with both the moderator and other participants, where many side conversations may arise. Participants are limited to 140 characters in their answers, which makes for a very fast-paced, but interactive chat.

While there are several Twitter apps, you can make the most of the discussion by using tweetchat.com. There are instructions on how to use the service, and to join the chat (or see previous discussions), search #btsm and all participants will pop up.

If you have questions about the chat (or anything brain tumor-related, really), the moderators @cblotner_ and @zheatherchamp are regulars on Twitter.

The chat is open to patients, survivors, physicians, caregivers, partners, children and friends who have been affected by brain tumors. Catherine Blotner, one of the moderators and an astrocytoma survivor, says, "Everyone is welcome to join the conversation or simply lurk to see what's going on."

She hopes to have more physicians tuning in soon, much like what has evolved with the #bcsm chats. "We heard from patients, survivors, bereaved parents and children, siblings and friends last week," she says. "Patients respond with their experiences and perspectives, and the rest of the community involved responds based on what they observed from the patients, and how they felt throughout the process."

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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