Sarcoma Alliance Gives Tips for Caregivers

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The national nonprofit organization has created a web page to help people who care for cancer patients.

Kathy Chambliss, with Mark Schulein, whose paddleboard bore the name of her son, Bob,

Kathy Chambliss, with Mark Schulein, whose paddleboard bore the name of her son, Bob, in 2010

Parents have to make all the decisions for young children, but it’s different when your child is grown up. Like other adults, he may feel a need to control what he can in a situation that takes away so much autonomy.

Caregivers must learn to seek help, simplify and organize their lives, and remember to take care of themselves, too, according to the Sarcoma Alliance.

"You know how flight attendants tell people to put on their oxygen masks first, before assisting others?” asks board member Suzie Siegel of Tampa. “Caregivers need to take care of themselves so that they don’t burn out.”

The national nonprofit has created a web page for cancer caregivers that recommends:

-- Don’t feel bad about accepting offers of help from others. “People often feel the need to do something,” says Siegel, a survivor of metastatic leiomyosarcoma who was diagnosed while caring for her father, who had Alzheimer’s.

-- Don’t be afraid to ask for help from others. “Be specific about what you need, whether it’s running errands, bringing food, or sitting by the patient’s bedside,” she says.

-- Don’t feel guilty about setting aside a little time for yourself.

-- If you work, ask your company’s human-resources department about family-leave policies.

Sarcoma is a cancer of connective tissues, such as muscle, fat, bone and blood vessels. It can arise anywhere in the body, at any age. Because of its rarity, caregivers should be prepared to explain it to others, Siegel says.

The web page suggests other ways people can help adult cancer patients:

-- Help keep and organize a notebook of test results, drugs, treatments, appointments, and questions to ask at the next appointment.

-- Try to support the patient even when you two don’t agree.

-- Remember that every patient is different, as is every caregiver.

“Everyone is working in their own way, and other caregivers are hurting just as much as you are,” says Kathy Chambliss, an advanced nurse practitioner at a Veterans Administration hospital in Jackson, Miss. She lost her son, Bob, to liposarcoma in 2007 when he was 41. She recognizes the suffering of other family members and his many friends, “who were just like family.”

"Parents have to make all the decisions for young children," she says, "but it’s different when your child is grown up. Like other adults, he may feel a need to control what he can in a situation that takes away so much autonomy."

A great source of support, she says, is the Alliance, based in Mill Valley, Calif. It offers a Peer-to-Peer Network, live chat room, blog, Facebook page, YouTube channel and discussion board so that people affected by sarcoma can connect. For more information, visit http://sarcomaalliance.org.

Bob Chambliss, who grew up in Tampa before moving to Marina del Rey, wrote about the day after he was diagnosed with liposarcoma: “I finally got online and Googled ‘sarcoma.’ First few sites provided a bleak outlook, and no direction about what to do. In the Sarcoma Alliance, though, I found a wealth of information, lucidity and hope ... and for that I’ll always be grateful.”

"Read more about Bob in our Stories section, Siegel says. “He showed how to live your life fully, despite a bad prognosis.”

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