Fatigue in long-term survivors of cancer can range from being a nuisance to being a disabling condition. For some survivors, the fatigue comes and goes. For others, energy and stamina are permanently reduced.
I’ve never felt less than anyone else because I couldn’t keep up. I’ve always viewed my life from the standpoint that I’ve been to hell and back and I’m doing mighty fine keeping the pace that I keep. I compare myself to me, not to others who are sick or healthy, or to the “past Carol”—only to the “present Carol.” If I set my goals and meet them for myself, then I’m content.
Your healthcare provider can consult the National Comprehensive Cancer Network (NCCN) Guidelines for Cancer-Related Fatigue for ways to manage fatigue, based on its possible causes and your individual situation and health needs. Medical management can include pharmacologic (i.e., medicines) or non-pharmacologic interventions, such as:
Enhancing activity level with exercise, physical therapy, or occupational therapy.
Consultation with a sleep expert to improve “sleep hygiene” (i.e., the things you do to get a good night’s rest).
Counseling and support (individual or group) to help with emotions and stress management.
Consultation with a nutritionist about diet and supplements.
Medicines for pain, emotional distress, and anemia, if needed.
Survivors with fatigue caused by heart damage sometimes benefit from medication and/or cardiac rehabilitation programs.
Sometimes there is no medical treatment for fatigue even when the cause is known. Many brain tumor survivors and some leukemia survivors treated with cranial radiation have fatigue from unknown causes. This exhaustion can affect a survivor’s education and social life. Counseling for these survivors can include how to get accommodations in school through an Individualized Education Program or Individualized Transition Plan (see Chapter 4 ). Some options are to go to school half days, allow more time to get from class to class, and participate in adaptive physical education.
I watched my son Bobby sink into a sedentary lifestyle after his bone marrow transplant, and it scared me. He was so tired after transplant that he just laid around at home. He would toss and turn all night long and then fall asleep just as he was supposed to be getting up for school. He would fall asleep in class, be unable to focus and learn, and then fall asleep on the drive home, crawl into bed for a few hours, get up to eat and do schoolwork at 10 p.m., then toss and turn again for half the night. Even if he didn’t nap in the late afternoon, insomnia seemed to be a chronic problem, and he was always so tired.
We took him out of school to homeschool him for 11th and 12th grade, and he did beautifully. If he had a bad night, he slept until he woke on his own, then did his schoolwork at his own pace. If he had difficulty with a lesson, he reread it until he understood it. He still sat around the rest of the time, so I pushed him to go to the local health club. He then joined an aikido class taught at the health club and that was very helpful. He got out to exercise for 4½ hours per week. He started riding a bike to a job last spring. I began to notice increased good health, good color, toned muscles, and more energy than ever before.
Counseling for all survivors suffering from post-cancer fatigue can address several issues. Psychological distress that existed prior to cancer or resulted from cancer treatment may make fatigue worse. Resolution of these issues may improve your energy level. Therapists who specialize in this area can also work with you to devise an energy conservation plan. Supportive discussions about the effect the low energy has on your life may result in new ways to adapt to the condition. Counseling may also help lift the burdens of negative feelings such as thinking that you are lazy or selfish.
One of my ways of conserving energy is to just sit down. When I am doing chores and my energy level dips, I sit down for 15 minutes with my legs elevated. I allow my mind some quiet time also. I stop thinking about what is awaiting my attention. It will all still be waiting after my rest. This rest gives my body and my mind a chance to rejuvenate. I find it most helpful.
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To save energy, I usually just sit down for a little bit. Or if it’s bad, I take a 20-minute power nap. I also find bouncy music and playful kittens to be energizing.
As for weather, I find that sunshine makes me want to go outside and play, but once I’m out there I don’t last very long. It feels like the sun drains me. With all the clothing I have to wear in winter I feel like I’m dragging a whole other person around with me as well, so I get tired then. But I always feel less guilty in the winter because no one wants to go out and do energetic things. Everyone’s content with watching a movie or some other sit-down activity.
The following are other general suggestions for coping with chronic fatigue:
Experiment with your activity and rest patterns and monitor your fatigue
Avoid or modify activities that cause additional fatigue
Schedule activities for when you have the most energy
Minimize stressful situations as much as possible
Adopt good sleep habits
Accept help when you need it
Eat a balanced diet that is low in caffeine and junk food
Engage in reasonable exercise approved by your healthcare provider
Find activities to refresh your mind or distract yourself (e.g., walk, listen to music, garden, bird-watch, fish, cook, knit, paint, play with pets, watch a funny movie, get a massage)
Practice meditation and relaxation exercises
Focus on what you can do, not what you can’t do
My daughter was a soccer player until she was diagnosed. Last weekend, watching the women’s World Cup, she said she can’t believe she ever could run for 90 minutes straight. She loved soccer, but cannot participate yet. Her first year in remission was most remarkable by the fatigue. It was a huge problem for her. She had to delay her entrance into college for a year to go through treatment and recovery. If it were not for the office of student disabilities at her university, she wouldn’t have made it through the first year.
Good news, though, the second year went better. She is now able to rollerblade and can get up the stairs. I think she learned to budget her energy just like others budget their time. She can no longer dance all night, but she can dance and that’s a good thing.
Table of ContentsAll Guides
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating the System
- 5. Staying Healthy
- 6. Diseases
- 7. Fatigue
- 8. Brain and Nerves
- 9. Hormone-Producing Glands
- 10. Eyes and Ears
- 11. Head and Neck
- 12. Heart and Blood Vessels
- 13. Lungs
- 14. Kidneys, Bladder, and Genitals
- 15. Liver, Stomach, and Intestines
- 16. Immune System
- 17. Muscles and Bones
- 18. Skin, Breasts, and Hair
- 19. Second Cancers
- 20. Homage
- Appendix A. Survivor Sketches
- Appendix B. Resources
- Appendix C. References
- Appendix D. About the Authors
- Appendix E. Childhood Cancer Guides (TM)