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SICK
AND TIRED
Battling
cancer fatigue
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SICK
AND TIRED
Battling
cancer fatigue
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Illustration by Malcolm Garris/PhotoDisc |
By
Jane Erwin For many cancer patients, it just takes too much energy to get out of bed. Simple tasks, such as taking a shower, leave them exhausted. And although most cancer patients say they suffer from cancer-related fatigue, only recently have healthcare professionals looked for ways to manage it. Research shows fatigue affects 90 to 100 percent of cancer patients. "It’s amazing how many patients have some form of fatigue. It impacts all areas in their quality of life," said Marilyn Grainger, MS, RN, chair of the Oncology Nursing Society (ONS) national fatigue campaign. In 1995, the ONS and Ortho Biotech Inc. formed a partnership and created FIRE, Fatigue Initiative through Research and Education. That project put 200 oncology nurses through several days of intensive training; in turn, they went out to educate their peers and patients and their families. "I don’t believe I heard about fatigue until the FIRE project," said Gloria Velez-Barone, MSN, ANP, RN, clinical nurse specialist for the oncology service line at Holmes Regional Medical Center in Melbourne, Fla. "Even though it’s the No. 1 complaint of cancer patients, it hasn’t been recognized as significant. To get attention, it has to disrupt or impact treatment, or be life threatening." CAUSE One of the first steps in treating fatigue is understanding why it happens. "It’s unclear if fatigue is caused by the disease or by the treatments. Some is definitely caused by treatment, due to immune systems and hemoglobin levels being attacked. Some fatigue may be related to the death of the bad cells. A lot is unknown," said Grainger, who works at Waukesha Memorial Hospital in Wisconsin. What patients do know is how lousy they feel. "I had to talk myself into going on," said James Nash, a 61-year-old patient who worked with Grainger. Last May, he discovered he had gastric cancer. Nash underwent surgery, four months of experimental treatments, and chemotherapy. "The fatigue started from Day 1," said Nash, a dairy farmer who also raises racing horses. "I just took things one day at a time. It was almost impossible to climb stairs. I couldn’t go out to eat because I couldn’t stand to be up that long. It really wiped me out." Fortunately, Nash’s fatigue began fading about two months ago. "The other day, I drove 156 miles and loaded hay bales," he said. One tool that helps health professionals understand cancer-related fatigue is "In My Steps," a virtual reality computer program that allows a user to "see" the rooms of a home and perform everyday tasks. Movements are made more difficult, increasing frustration and simulating fatigue. Ortho Biotech developed "In My Steps" and is sponsoring a cross-country tour of two vans carrying a dozen virtual reality pods. "Approximately 4,000 people have gone through it," said Bob Roach, director of public affairs for Ortho Biotech. "Patients say it is very close to their own experiences. Sixty percent of healthcare professionals who’ve been through it said it would alter the way they think about and treat fatigue." MANAGEMENT Fatigue can’t be cured, but it can be managed. The first step is good patient assessment, Velez-Barone said. "Healthcare providers have to realize it’s there and understand the risk factors. If the patient has anemia, treat it. If they’re malnourished, bring in a nutritionist. Use every resource and other disciplines," she said. Part of managing fatigue is recognizing it, said Maryl L. Winningham, PhD, RN, executive director and senior research fellow at the Institutes for the Advancement of Health Care Engineering, a Salt Lake City think tank. In fact, calling it cancer fatigue may keep healthcare professionals from understanding that there may be many ways to help patients regain their energy, she said. "Calling it fatigue means there’s only one symptom, which means we look for ‘the’ right treatment. But it varies so much among patients. And it occurs not only with cancer but with AIDS, diabetes, lupus, heart disease, and other illnesses," Winningham said. She prefers the term cancer-related fatigue syndrome. Grainger said her team looks at a patient’s daily activities and commitments and prioritizes them. "We see if they can delegate any responsibilities or put some things on a back burner. When friends ask what they can do, we tell patients to let them help," she said. ENERGY Activities should be spaced out, with breaks taken whenever necessary. Grainger suggests a 15- to 20-minute break involving distractions such as music, a book, meditation, or television. A good diet is important, especially one that’s high in calories for energy and high in protein to build and repair the body. "There are a lot of things people do that use a lot of energy, too much energy," said Eileen Donovan, PT, assistant director of rehabilitation services at University of Texas M.D. Anderson Cancer Center in Houston. They include walking improperly, using poor posture, standing up to take a shower, and using poorly fitted assistive devices. "You don’t have to stand up to get dressed. You don’t have to cook a meal; you can eat one that’s already prepared," she said. "Physical therapists and occupational therapists can address these issues." Fatigue also expresses itself in cognitive problems and forgetfulness, Winningham said. "We haven’t begun to explore all the manifestations, but there is a tremendous human cost. I know people who’ve lost their jobs. Others drag themselves to the office but can’t concentrate. And you don’t get disability for fatigue," she said. But the healthcare profession is starting to recognize the problem, Winningham said. "At least now, patients are encouraged to talk about it," she said. |
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