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Support at Your Fingertips: Try a Discussion Board

Posted by lynnesmith in The LLS Blog, 29 July 2015 · 303 views

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Having cancer can be a lonely experience, and it’s not always so easy to find others with a similar diagnosis. Even if you could, you might not always want to talk about everything face to face.


Sometimes an online discussion board is just what you need.


The Leukemia & Lymphoma Society’s(LLS) discussion boards, where people can post messages under a pseudonym and read others’ responses, can be particularly helpful for anyone who has a hard time getting out, can’t find a local support group, or has a less common diagnosis. LLS’s boards offer more than two dozen topics to choose from, including “Newly Diagnosed,” “Young Adults,” “My Child Has Cancer,” a caregiver “lounge,” and individual boards for each blood cancer diagnosis.


By tapping into a much larger community, not bound by geography, you’re more likely to find someone meeting specific criteria or who had a similar experience, according to LLS Information Specialist Rebecca Herman, who recommends the boards as another option for support.


“They can be a good way to find others going through a similar experience and research concrete information and resources,” Herman said. “And if you’re not comfortable discussing something, this allows you to be anonymous and not have to look someone in the eye.”


Recently, on the chronic myeloid leukemia (CML) board, members posted about looking for a specialist, using different labs for test results, coping with muscle aches and an unexpected rash, and having brain fog. “Froggie girl” vented about being “stuck in a time bubble” and not being able to come to terms with having cancer. She got 34 replies, mostly from people reassuring her that it’s just an expected emotional slump and things will get better.


When a newly diagnosed 28-year-old woman talked about her struggles and losing her hair on the non-Hodgkin lymphoma board, others recommended a head shaving party and medications for bone pain. After four rounds of chemotherapy, she checked in again to share good test results.


On the “My Child Has Cancer” board, parents are talking about a four year old getting needle phobic, wish trips, headaches and recommended ports. “MaddieMom” updated the group on her young daughter’s progress and thanked everyone who helped her through the hard times.


“I can't wait for a day that I don't worry ...every cough, sneeze, bruise, every time she's tired, crabby, has a headache. Will I ever take things as they are and not freak out about counts and leukemia? I can't even remember the last time there has been a fever run, but I still check her at least twice a day.”


Trey Fox, a CML survivor in San Antonio, TX, has been posting on the LLS boards with his “best imaginary friends” for seven years. He joined to learn but stayed to help others. Recently he posted about tyrosine kinases, helped decipher the results of a bone biopsy, addressed concerns about dizziness on Gleevec, suggested someone look into switching drugs, and calmed someone who needed reassurance about her blood counts.


“My CML has been under control for almost a decade now so it is no longer much of an issue to me personally, but I find I cannot neglect giving back to the new people who come along. I have learned so much that it would be a waste to withhold my hard-gained information from those who desperately seek answers.”


Pam Martin, who lives in western Pennsylvania, said she found the boards in 2011 when she was newly diagnosed and searching the web for credible information. Within hours of joining and posting, she received support, information, and welcome messages from other members. She has since built friendships with people she’s never met, learned about her disease and found a place where she can be completely honest.


“I felt like I had found a home,” she said. “There were other people who knew how I was feeling and assured me there were better days ahead.”


Visit the LLS discussion boards here.


Feel free to call the LLS Information Resource Center at the toll-free number (800) 955-4572 or click the "LIVE CHAT" button on the homepage. Download free information booklets, read the LLS blog, listen to educational webcasts and videos, and learn about other helpful organizations.

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