Cancer related fatigue

What is fatigue?

Fatigue is a feeling of extreme tiredness, exhaustion or lack of energy. It can happen even when someone person seems to be getting enough sleep.

Fatigue is common in people with cancer, this is called cancer related fatigue. Up to 90 percent of people report feelings of fatigue, which for some people can be a distressing and disruptive side effect. It is different to tiredness that someone without cancer may have as it can last a long time, and it does not usually go away with sleep or rest.

Cancer related fatigue can affect you physically, emotionally and mentally. How it affects you and how disruptive it is can vary from person to person.

What causes cancer related fatigue?

It is not fully understood what causes cancer related fatigue. It can be caused by the cancer itself, its symptoms or as a side effect of treatment.

Cancer can change the hormone and protein levels in the body which affect the immune system and can cause or worsen fatigue. Cancer can make toxic substances which stop cells working normally, for example reducing potassium or calcium levels, which can cause fatigue.

Cancer can reduce the number of red blood cells, causing anaemia. This can cause breathlessness, dizziness, fatigue and difficulty concentrating.

Cancer can cause pain and having pain over a prolonged period can cause fatigue. Some of the medication used to treat pain can cause tiredness.

Other things that can cause fatigue is the change in activity levels, increase in stress and anxiety levels, change to appetite and eating habits.

How long does fatigue last?

This can vary from person to person. It can last for weeks, months or years, and may continue after treatment finishes. How you are affected by fatigue and how long it lasts may depend on your treatment.

With chemotherapy, targeted therapy or immunotherapy in cycles, fatigue may be worst initially then improve until the next treatment.

With radiation therapy, fatigue may get worse as the treatment goes on and will often decrease a few months after treatment has ended.

How can fatigue affect my daily life?

Fatigue can be very frustrating. It can be difficult for those around you to understand how limiting fatigue can be. This is especially hard to explain if you are affected when treatment has finished and the expectation is that you should be getting back to your usual routines. You may notice some days are better than others and it can be hard to predict a pattern in this.

It can make everyday life hard work, and may mean you have difficulty doing tasks such as getting dressed or washed. You may be too fatigued to chat to friends or family. Things that used to be second nature can now feel very hard work.

Fatigue can make it more difficult for you to concentrate, remember things or make decisions. You may have to adapt how you study or make amendments to your work schedule.

Fatigue can affect your mood and make you have less patience, feel angry or sad, which can also have an impact on how you feel about yourself and your relationships with other people.

You may worry that the tiredness is as a result of a physical illness. If this is a concern you can talk to your doctor. It may also feel like fatigue is a constant reminder of your cancer, which can be hard to accept.

Ways to manage fatigue

It is important to tell your doctor, nurse or therapist if you have symptoms of fatigue. Your medical team can help you to manage it.

Exercise

This may feel like that last thing you want to do, but exercise is very important and beneficial. Also, becoming too inactive can make your muscles weaker and make your fatigue worse.

Doing light to moderate physical activity every day can help to:

• make you feel better
• give you more energy
• improve your appetite
• regulate your general mood
• improve sleep

It is important to build this up gradually and safely. You can ask for guidance with this from a healthcare professional if you are unsure.

Setting small activity based goals using a step count or activity tracker can be useful to keep track of how active you are and how you are building this up gradually.

If you are having treatment you should try to keep as active as you can. Your doctor, nurse, physiotherapist or occupational therapist can all help to build an activity programme and help you set realistic goals.

Rest and sleep

Resting is important to help you cope with fatigue. When able you should plan a few rest periods throughout the day. Minimise mental activity during these rest times. If you do sleep try to keep this short so it does not affect your night time sleep.

Disturbed sleep at night can make you feel tired. To make sure you sleep as well as possible, you could try to make sure you go to bed and get up at the same time each day.

Spend time relaxing before you go to bed for example have a bath, listen to music or read a book. Stop caffeine 6 hours before bed and limit daytime naps to 20 to 30 minutes. It might also help to have a light snack before you go to bed.

Keep a routine

It is important to keep a good routine if you are able to. Try to get out of bed, get dressed and go for a short walk if you are able to. It is important not to increase activity too quickly. This can lead to what is called ‘boom and bust’ which is a lot of activity in a short space of time followed by a spike in the fatigue symptoms.

There may be small adaptations you can make to your routine which will make a big difference, for example sitting down to complete tasks, having regular rest periods, asking someone to help with some tasks.

Keep a fatigue diary

You may find it useful to write a diary with a record of activity completed and level of fatigue. This allows you to see when you have the most energy and what may be making your fatigue better or worse.

It allows you to plan the most important activities for when you have the most energy and plan in rest periods throughout the day. Fatigue can affect on the same day or up to 2 days after exertion so a diary can help pick up on these patterns. It allows you to plan daily and weekly activities.

Eating well

It can be hard to eat enough to keep your energy levels up, which may be due to side effects of treatment making you feel unwell. Try to eat a healthy balanced diet when you can and make sure you drink plenty of fluids.

Avoid too much refined sugars in food or drinks as these can cause a spike in energy. Choose slow release energy foods. See Cancer Research information on improving diet.

Getting support from others

You can get support from family, friends, your medical team or other people who have been through similar experiences.

Sharing your experience with someone who has been through a similar thing can help to make you feel less anxious and feel less alone and they may be able to give you tips on how to manage the things you are finding most challenging. You can speak to your medical team about support groups in your area or look at cancer charity websites. There are also specialist therapists and counsellors who work specifically with people affected by cancer.

Complementary therapies

Complementary therapies such as relaxation, mindfulness, massage therapy or yoga may help. Some therapies may affect your cancer treatment so it is worth speaking to your doctor or nurse before using these.

Spoon theory

Spoon theory was created by Christine Miserando as a way for people with chronic illness or other activity limiting conditions to understand the impact of variable energy levels.

A spoon is a metaphor which represents the amount of energy a task takes. Everything we do uses up a number of spoons, which can be different depending on the task or person. Brushing your teeth may take 1 spoon, but going food shopping may take 3 spoons.

Doing too much one day can leave you with less spoons the following day. The number of spoons you have may vary from one day to another. Each activity you do in a day can take a different number of spoons.

If you have used all your spoons you may need to build more rest periods in your day or look at ways to pace yourself throughout the day. Using this theory can allow you to explain to others how difficult living with fatigue can be.

Imagine you have 15 spoons 1 day, how would you use them?