Most of us have so many things on our to-do list that we often neglect our own personal needs. Self-care is necessary for everyone, but this is especially true for those affected by a life-altering disease like cancer. Whether you’re a patient or caregiver, self-care is essential to find some relief from what can feel like an all-encompassing disease. Meredith Barnhart, director of The Leukemia & Lymphoma Society’s Information Resource Center, and a licensed clinical social worker, leads a team of social workers, nurses and health educators who provide blood cancer patients and caregivers with free personalized information and support tailored to their specific diagnosis and needs.
“It’s always important to eat well and exercise, but there are many other points to self-care that are often overlooked,” says Barnhart. “Self-care means tending to your physical and emotional needs so you can be your absolute best no matter what your circumstances are.” Barnhart offers these important and often-overlooked self-care tips.
Be aware of your limits. Taking care of yourself is top priority and there is only so much you can take on. If you don’t have the time, energy or interest, it is fine to nicely say “no” when people ask you to take on tasks. At work, don’t volunteer for projects that might make your workload unmanageable. If saying “no” feels difficult, tell the person asking what you are willing to do instead, if anything. This could mean doing a smaller part of the task or having more time to complete the task.
Try something new. Cancer can take a toll on your mental health. It’s important to try to reduce stress by doing things you enjoy, but also consider trying something new that is gratifying and maybe a little exciting for you. You can also try a new complementary therapy to enhance your current treatment plan. Complementary therapies include an array of healing approaches that embrace a holistic concept for care – treating the mind, body and spirit. Examples of complementary therapies are art therapy, mediation and yoga. Make sure you talk to your doctor before engaging in new activities.
Broaden your circle. Support groups are the perfect place to talk with other people affected by cancer, including patients, family members and caregivers. They provide mutual support and offer an opportunity to discuss anxieties and concerns with others who share the same experiences. Exchanging information and advice may provide a sense of control and reduce feelings of helplessness. If you’re uncomfortable meeting face-to-face, there are plenty of online support groups available.
Addressing fatigue. Fatigue is very common in anyone fighting a major illness or disease and often begins before diagnosis, worsens during the course of treatment and may persist for years even after treatment ends. To receive the full benefits of sleep, aim for 7-9 hours of continuous sleep for the body. To improve your sleep quality, try and go to bed at the same time every night and forego daytime naps that may interfere with nighttime sleep. If you need to nap, do not sleep for longer than 30 minutes.
LLS offers free information, education and support services for patients and families touched by blood cancers. For more information, please call: (800) 955-4572 (M-F, 9 a.m. to 9 p.m. EST) or reach out on lls.org.
A nasty cough and extreme fatigue first led Myrna and Lou Binder to bring their 12-year-old son, Jeff, to the doctor for an examination. But the flu-like symptoms persisted until more tests enabled the doctors to arrive at the shocking diagnosis: non-Hodgkin lymphoma. The year was 1975.
Over the next three years, Jeff endured chemotherapy and other treatments, usually at their doctor’s private offices in Upper Manhattan. But once a week, on Thursdays, he received his treatment in the public outpatient clinic that what was then known as Babies Hospital, part of Columbia-Presbyterian Hospital.
It was there that Jeff and his parents witnessed the suffering of families who were even less fortunate than they were. It was those Thursday visits that would forever change his perspective on access to care.
Helping Families When They Need it Most
While Jeff was receiving treatment, Myrna, who goes by the nickname Moppie, began volunteering at the public outpatient clinic. Inspired by his mother’s passion to give back by volunteering her time, Jeff told himself that if he was ever fortunate enough to have the means to help the families of childhood cancer patients, he would try to do so.
And so he did. Several years ago, Jeff established Moppie’s Love, an organization dedicated to providing financial help to the families of children who have cancer. The funds are provided in block grants to children's hospitals and the local staff is empowered to make decisions about how they are used. Moppie's Love has donated to several hospitals around the country.
Recently, after meeting Piper Medcalf, the executive director of The Leukemia & Lymphoma Society (LLS)’s Georgia Chapter, Jeff was inspired to join forces with LLS to launch the Urgent Need Program. The Urgent Need program provides eligible pediatric and young adult blood cancer patients, or adult blood cancer patients enrolled in clinical trials, with financial assistance for non-medical expenses including rent, mortgage, lodging, utilities, childcare, elder care, food, transportation, car repair, car insurance, phone service, and acute dental work related to treatment. Eligible patients receive a stipend of $500, once within a 12-month period, for emergent costs that impede the patient from receiving timely treatment.
A New Perspective
Jeff and the Binder family have had a profound impact on patients in urgent need of care and show no sign of slowing down, as Moppie’s Love continues to expand year after year.
“You never choose to have cancer, but it gave me a new perspective I would not have without having gone through it,” says Jeff. “I feel fortunate that I am able to give back to a cause that is so organic to my own experience. I want all childhood cancer patients to know there is hope to live a healthy adult life.”
And what is Jeff’s philosophy on philanthropy?
“Do what you can based on your means. Try to give to something about which you are passionate and is true to your experience.”
Bolstered by the success of its adult Beat AML Master Clinical Trial, LLS has set its sights on changing the paradigm for drug development for children with acute leukemia. LLS has set a goal to launch a new precision medicine clinical trial for children modeled on our Beat AML trial for adults and has convened a collaboration to lay the groundwork for a study for children with acute leukemia in 2019. LLS also has committed to doubling its investment in academic research to find new treatments for children, particularly those who don’t respond to standard treatment and to alleviate the risk of long-term side effects.
Along with research, LLS is adding more services to help children and their families, including financial assistance programs and family support.
We’re proud to team up with Julie Guillot who lost her son Zach to acute myeloid leukemia (AML) in 2014. Not only has she survived, but thrived in her quest to cure AML. She is the founder of Be Strong, Fight On (BSFO), and a passionate advocate for LLS, especially for pediatric cancer cures.
Julie, along with LLS Chief Medical Officer Gwen Nichols, MD, are in a featured episode of Robin Roberts’ digital series, “Thriver Thursday,” featuring inspiring stories of hope, survival and thriving. Earlier this morning, the segment was previewed on Good Morning America (GMA) and Julie also helped raise awareness through a Facebook Live conversation one on one with Robin.
LLS is committed to providing information, resources and support to those affected by blood cancers. Speak one-on-one with an Information Specialist who can assist you through cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information. Our Information Specialists are master's level oncology social workers, nurses and health educators.
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