Overcoming cancer-related fatigue – how it affects me and how I can cope
Battling any form of cancer can be a feat in itself. But when cancer is accompanied with fatigue, it can become even more difficult to manage.
What is cancer-related fatigue?
Fatigue is defined generally “as a feeling of lack of energy and motivation that can be physical, mental or both.” It can be an effect of the different stresses in life.
Fatigue differs entirely from tiredness. Unlike tiredness, fatigue is not relieved by rest or sleep, and is usually excessive and “whole-body”. It can span a few weeks or last a month or two (acute fatigue). However, when fatigue lasts more than 6 months, it is categorised as a chronic (fatigue) condition.
Cancer-related fatigue, according to Fatigue Practice Guidelines Panel, is defined “an unusual, persistent, subjective sense of tiredness related to cancer or cancer treatment that interferes with usual functioning”.
Cancer-related fatigue (CRF or cancer-fatigue) occurs in about 70-100% of all cancer patients. It is easily the most unmanaged symptom among patients with cancer undergoing chemotherapy, radiation, or biotherapy. In short, CRF is the most common side effect of cancer and its treatment.
How it affects me?
There are different descriptions of Cancer-fatigue. Some describe it as “paralyzing”, “drained”, or “washed out”. Unlike any other fatigue they’ve experienced whilst still healthy, others find it hard to describe their CRF experience in a way that others can understand.
The American Cancer Society tells us that cancer-fatigue can vary on its severity and how it affects you from day to day. CRF negatively impacts your daily normal activities. Even getting out of bed, showering, eating meals, or even sexual intimacy will seem impossible.
Cancer-fatigue causes changes in mood and mental fatigue, making it hard to think clearly, focus, or pay attention to a person, an activity, or a job/task. You may forego joining in the family talks and gatherings, social, and community activities you used to actively enjoy. It affects the social relationship with your partner, children, friends, and/or carers.
CRF can also make it challenging to follow your treatment plan for cancer. Its effects may overwhelm you, making your recovery harder. The length of time cancer-fatigue affects individuals is unique and different. It may last months to years after completion of cancer therapy, ultimately decreasing your quality of life.
Where does it come from?
Cancer-related fatigue can be a result of different things related to the cancer disease process itself or as a side-effect of the drugs for cancer treatment.
The National Comprehensive Council Network and the Cancer Council explains fatigue results generally from aneamia (a decrease in oxygen-carrying red blood cells) that occurs when the cancer reaches the bone marrow. The cancer itself can also produce toxins that impairs normal cell functions (e.g. immune-related activity). Affected cells may also produce less potassium and calcium – important minerals needed for proper muscle function.
Because of the cancer cells’ “parasitic” nature, they compete for important nutrients at the “expense of the normal cell’s growth and metabolism”. As a result you are left feeling tired and weak.
The medications involved in chemotherapy such as vincristine, vinblastine, and cisplatin, can cause CRF.
Radiation therapy can cause fatigue that adds up over time (cumulative fatigue). It occurs regardless of treatment site and may last 3-4 weeks after treatment stops. Post-treatment, it may even persist for 2-3 months.
Cancer treatments that use natural cell proteins (Cytokine therapy) like interferons and interleukins, in high amounts can be toxic to the immune and endocrine (hormone) system. Thereby leading to persisting fatigue.
Other factors that contribute to cancer-fatigue include: inadequate nutrition, sleep problems, other diseases aside from cancer, no physical activity or exercise, other medication, pain, anxiety and depression.
What are the symptoms of CRF?
Cancer Research UK lists the following general symptoms of fatigue:
- Problems with sleeping
- Problems with getting up in the morning
- Poor nutrition (vomiting/diarrhoea, poor appetite)
- Lack of energy and feeling you can’t be bothered to do much
- Anxiety or feeling depressed
- Muscle pain
- Feeling tired and breathless doing everyday tasks (e.g. bathing, walking to answer the door, etc.)
- Loss of interest on usual activities you used to enjoy
- Finding it hard to concentrate or think clearly
- Feeling negative about yourself and others
If you have any of the symptoms listed above, you may have cancer-related fatigue. CRF is a serious condition that affects your quality of life, talk to your attending doctor, GP, or palliative care specialist about it.
How can I cope with CRF?
Overcoming cancer-fatigue cannot be done alone. Talk to a partner, family member, or friend about it. A counsellor or therapist can also help you talk about how CRF is affecting your daily life. They can help give you emotional, social, and moral guidance and support when you feel “drained out”.
Talk to a community nurse, your GP or treating doctor, a palliative care specialist or get in touch with a member of our PanSupport team.
There is no exact test to diagnose fatigue. Often, medical personnel will be asked to “describe how bad the fatigue is, how it affects daily activities, and what makes the fatigue better or worse.” A physical exam and laboratory tests (e.g. blood test) may be needed. This fatigue assessment will give your doctor the needed information about you and your condition to treat you effectively. To see if fatigue levels decrease over time or if fatigue patterns exist, this assessment may be repeated several times throughout and after your treatment.
By getting yourself checked for CRF, your doctor may identify other CRF contributing factors like pain, depression, and/or anaemia then give you appropriate treatment.
Saving your energy can help you through the day. This can be done by first acknowledging and accepting the fact that you may not be able to do everything you used to do daily. Plan ahead and decide which tasks are most important today. Focus on doing those tasks one-by-one and slowly. Ask help from family members or carers. The American Cancer Council says, “Let others help you. This can help them feel useful and get your tasks done, too”.
When a task takes too much energy from you, learn to delegate. Move items you frequently need for daily tasks to a lower or closer storage area, therefore reducing straining by reaching or long trips around the house. Use long-handled tools when picking up something on the floor. Strive for simplified tasks with motions combined.
Aside from using a journal for daily tasks, you can use it to record your emotions and feelings. Write down all the medications or treatments (including vitamins, herbal, and other non-prescription drugs) you take and record the effects on your energy. This journal may also be helpful for sharing information with your doctor or carer.
When you feel you have more energy, you can use a moderate pace (never rush!) through your daily list. If your task requires standing, try doing the task alternating between periods of standing and sitting. Take short, frequent rests to make sure periods of work and rest are balanced. Make sure you rest before feeling fatigued.
Use a chair with good back support. Adjust work heights and bend using knees and hips to avoid straining your back. Carry smaller loads or use a trolley or cart.
Engaging in enjoyable, regular exercise can help improve mood and energy levels. A study documented exercise in a person with pancreatic cancer helped with better sleep, decreased psychological distress, and managed cancer-related fatigue among other benefits. As with trying any new regimen, it is wise to always consult your doctor first.
They may improve your energy or boost your mood, however these effects are all temporary. They affect sleep patterns and are potentially dangerous when they interact with the cancer medications you take, and may even add more medical problems to pre-existing ones.
Avoid exposure to extremes of temperature and stay away from being exposed to cigarette smoke or car emissions. Avoid long, hot showers or baths. Use comfortable clothes that allow one to breathe freely and easily. Avoid holding your breath.
Feelings of frustration may creep up along with CRF, leaving you more tired and fatigued. Try a new hobby, read a good book, have quiet visits from family and friends, listen to relaxing music, or try meditation. Engage in activities that distract you from your frustration without needing a lot of energy expenditure.
Cancer treatment may leave you changes in the way you taste food, swallow, or eat. Often, treatments are accompanied with loss of appetite, nausea, vomiting, and/or diarrhoea. Talk to your GP or palliative care specialist to refer you to a registered dietitian to help you manage any nutrition-related problems and make sure they do not contribute to your cancer-fatigue.
Taking any of the above after 6pm will affect your sleep patterns, leaving you more tired and fatigued the next day.
There are numerous resources you can use as a support system.
Cancer Council has a call line at 13 11 20. Here you can speak to someone who has been in a similar situation, who can share their story and tips on how to cope. Pancare Foundation has a telehealth service and a range of different support groups you may like to try.
When to call your nurse or doctor?
- Loss of balance
- Inability to get out of bed for more than 24 hours
- Severe shortness of breath
- Worsening signs and symptoms
Anytime you feel the following symptoms, contact your medical provider immediately.
Fatigue is known as the most distressing symptom in cancer and cancer treatment. The negative effect it has to a person’s quality of life makes it a formidable opponent when battling cancer. However, with proper medical assessment, cause-specific treatment, counselling, and coping mechanisms through energy conservation, distraction, and stress management, along with access to “an informed and supportive oncology care team”, one can be better equipped to overcome cancer-related fatigue.
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