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Social Media: Keeping the Marrow Transplant Process Bearable via Social Media

Sipe, Caitlin

doi: 10.1097/01.COT.0000418348.45046.38

Social media can offer a crucial lifeline for the thousands of blood cancer patients—with leukemia, lymphoma, or multiple myeloma—who undergo bone marrow or cord blood transplants each year.

CAITLIN SIPE, Program Support Specialist, works with bone marrow and cord blood transplant patients at Be the Match Patient Services National Marrow Transplant Program in Minneapolis, MN

CAITLIN SIPE, Program Support Specialist, works with bone marrow and cord blood transplant patients at Be the Match Patient Services National Marrow Transplant Program in Minneapolis, MN



In cases involving long-term hospital stays or periods of isolation (cord blood and bone marrow transplant procedures may require spending weeks or months in the hospital), communicating with loved ones and the transplant community through social media can be an invaluable help.

After patients have a transplant, social media can link them and their caregivers to critical survivorship resources to meet physical, financial, and emotional challenges. Social media lets health care professionals stay in touch with patients and refer them to needed resources. This unique community of survivors benefits, too, from social media contact with other transplant recipients to share experiences and ways to stay healthy after transplant.

The following patient stories reveal why social media matters—from diagnosis through survivorship. Whether it's a young adult sharing his feelings on Twitter, a mother using a blog to communicate her progress to family and friends, or an older adult embracing Facebook to foster friendships through her transplant experience, these stories, shared with us via interview, illustrate how patients today turn to the latest social media tools for emotional support.

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Nick: “Today, I'm mad at the world”

If you had been following Nick on Twitter while he was in the hospital, you might have seen tweets like the above from him.

Twitter makes it possible to send brief messages up to 140 characters in length to a list of followers. Nick—who was diagnosed with testicular cancer at 19 and received two bone marrow transplants in March and May 2011—used Twitter to vent and release emotions freely and quickly without needing to speak to others.

As a young adult facing a life-threatening illness, Nick experienced a lot of anger, on top of feeling hurt and alone in life. “I used Twitter as a way to vent my frustrations,” Nick said. He wanted to let his emotions out, and social media was his saving grace.

In the hospital, isolated from most of his family, friends, college classmates, and the rest of the world, is where he used social media most. On Facebook, he updated family and friends on his progress to avoid the overload of phone calls and text messages. Nick received messages of motivation and support, not a flurry of questions. “Knowing I had the support of my family and friends helped me fight harder,” Nick said.

Hospitals can work with patients to help integrate these technology lifelines into their daily care. Nick noted that it's a combined effort: patients must be willing to be open about and share their experiences, and the hospital must be willing to advocate for social media as an effective means of support.

Nick preferred Facebook and Twitter as a means of personal expression. Social media reaffirmed that he had support from family and friends, especially during the times when he wasn't feeling inspired. “It just opens your eyes and lets you know you have a team behind you,” he said.

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Heather: “Social media is a support group”

Diagnosed with chronic myelogenous leukemia and pregnant with her first child, Heather, 31, was creating a new life while fighting for her own. In November 2010, her CML reached blast-crisis phase, and she was rushed to the hospital. When all other means of human connection were restricted, social media became her lifeline:

“I was in isolation for two weeks and could not leave the room. Anyone who came to see me had to be covered almost head to toe, so I wouldn't even see a human smile. I also lost my voice for a while and was unable to communicate.”

Her favorite method of social networking was her personal blog. Heather was able to journal, keeping friends and family updated, and uploading photos and videos. Facebook helped her connect to others and guide them to her blog, all providing Heather with a larger circle of support than she ever imagined she would have.

“I received a big envelope from a class in California with inspiring letters and drawings,” Heather said. “The teacher of the class used to work with my husband and started following my story, and now the entire class has followed my story ever since.”

Her blogging efforts even connected her to public media. Heather was invited to sing the national anthem at a 5K Be The One Run in support of the Be The Match National Marrow Transplant Program, and she also appeared on her local television station.

“Without my blog and Facebook, I would not have been able to see the open doors I was being led through as one shut behind me,” she said. “It made me feel that as long as I'm going through this I would be able to help others.”

Access to laptop rentals or a computer station and encouraging the use of social media to stay connected can be a healthier way to get through a hospital stay, Heather said. “It is difficult to read when you are on so many new medications. So a lot of people just watch television all the time.”

She suggests implementing laptop rentals for patients in isolation and providing assistance to set up Facebook, blogs, or email accounts.

“I believe even a little blogging can help anyone, even if it is just to update people so that the patient and caregiver do not have to spend so much energy and time on the phone or email,” she said.

Through her transplant journey, Heather used social media to sustain her mentally, spiritually and emotionally. Today, she continues to blog as a means of therapy and advocacy. Heather has reached a large community of transplant recipients, friends, and family affected by cancer through her blog, and she uses that network to raise awareness about transplant.

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Sue: “Social media was a lifesaver during the transplant process”

“There were many times during treatment that I felt I couldn't go on anymore. During these moments I would go on Facebook and update my status asking for support. Immediately I would get 20 or 30 responses sending love and prayers. I never felt alone with Facebook.”

Those are the words of Sue, diagnosed with acute myelogenous leukemia (AML) at age 57 in December 2010. Her doctors told her that her chances of recovery were less than eight percent. With the odds against her, Sue found a match and received a bone marrow transplant the following July.

An avid Facebook user before her diagnosis, Sue realized a new value in the social networking site in the hospital. Early in her treatment, Sue's friends created a Facebook “group” asking people to pray for her recovery. The number of group members quickly reached 300.

Sue started receiving support from friends, and posted frequent status updates on how she was doing and whether or not she could receive visitors at the hospital. She also joined Facebook groups for leukemia and transplant survivors, and met new friends who were also dealing with AML.

“When I was in isolation at the hospital, I couldn't sleep at night, and it was a great help to be able to get onto Facebook and chat with people, particularly those in different time zones,” Sue said.

Although Sue now uses Facebook less than she did in the hospital, she still logs back on when she needs support. When tests require anxiety-causing hospital visits, Sue finds comfort in Facebook.

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Social Media Matters

These stories show how social media can be used for emotional support throughout a life-threatening illness and treatment. Hospitals and health care professionals have an opportunity to make these tools more accessible for patients and their family members during long hospital stays.

And the result—the emotional connectivity that the wide variety of social media tools available provides—can have a profound effect on a patient's health and healing process.

© 2012 Lippincott Williams & Wilkins, Inc.
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