UCLH highest scoring trust in London for inpatients
25 October 2021
Publish date: 12 July 2021
To coincide with health information week, the Macmillan Support and Information Service (MSIS) hosted its first twitter chat on Wednesday 7 July. We invited three experts working at University College London Hospitals to answer questions on the topic of cancer-related fatigue. The experts were Dr Tony Kainth, counselling psychologist, Adina Morris, senior occupational therapist and Catrina Davy, cancer information specialist (who answered questions on behalf of Laura-Jane Cowdell, team lead physiotherapist and Kassie Montanheiro, lead cancer dietitian). The twitter chat was moderated by Aneta Metodiev, cancer information officer.
Here is a summary of the chat:
Q1: What is cancer-related fatigue?
Cancer-related fatigue (CRF) is the feeling of extreme exhaustion or lack of energy. CRF can be caused by many things, including the cancer itself, cancer treatments (such as chemotherapy), or treatment side effects such as anaemia and poor appetite. CRF can affect your physical, emotional, and mental wellbeing.
Nine out of ten people with cancer will experience CRF. Its intensity, duration, and how often it occurs differs from person to person. It may last for weeks or longer after treatment finishes.
CRF is different from ordinary tiredness, which is usually short-term and improves after resting or stopping activities. People may have CRF even when they get enough sleep and rest.
People find CRF very disruptive. It can make it difficult to complete everyday tasks and plan ahead. Other people may not always understand how someone is feeling when they have CRF.
Q2: What is the boom and bust cycle and how can it be overcome?
When good days come around and your energy levels are good, you are ready to do stuff. It can feel like you’ve won the lottery! You might be tempted to fit in as much as you can. But you may end up doing too much. This can make your symptoms flare, depleting your physical and mental resources and leaving you with less or no energy to do much else. This is known as the boom and bust cycle.
You might go through the boom and bust cycle over the course of a day, a few days, or longer. Each time you go through the cycle, you may end up with less available energy on your ‘good days’. The boom and bust cycle can also impact your mood and cause anxiety.
Following the boom and bust cycle can feel like to going on a shopping spree when you get paid and then being in debt for the rest of the month.
There are many ways to overcome the boom and bust cycle including checking in with yourself. Ask yourself: ‘Is my battery charged up enough for this task?’ or ‘Will this drain my battery entirely or will I have some energy to spare for my other tasks? ‘.
Try to balance activity and rest. Learning to plan, prioritise and pace your daily activities will help you to save energy and manage your fatigue. We call these the 3 Ps. There’s more about the 3 Ps in the answer to Q3 below.
Q3: What are your top tips to manage fatigue?
1. The 3 Ps - plan, prioritise, pace
Plan - Look at the activities you do daily and plan when you’ll do them over the day or week. Think about how much energy each task might take and when you tend to have the most energy. Plan your time with a sensible mix of low, medium and high energy tasks, and include plenty of breaks.
If some activities make you breathless or fatigued, break them into smaller chunks to do over the day. Do weekly activities such as gardening and shopping on separate days, with rest days in between.
Prioritise - Some activities are necessary, but others aren’t important. Prioritising your daily tasks can help you to plan your day. Think about what you need to do and what you want to do. As well as what can wait or be done by others.
Pace - Listen to your body. Learn to stop before your body tells you to stop. This will help you have enough energy to complete an activity and recover faster. We’re often tempted to ‘soldier on’ through fatigue but this can keep the boom and bust cycle going.
It’s important to find ways to conserve your energy while completing your daily tasks. For example, try using adaptive equipment such as a special stool when having a shower.
2. Take care of yourself
Take care of yourself as well as you can. Be kind to yourself and give yourself credit for your achievements, however small they might seem.
Remember, what works for others might not work for you. For some, relaxation techniques and massage will help, while for others it might be exercise. You might need to try out a few different strategies before you find one that suits you.
3. Be active
Gradually increase your physical activity levels. Allocating some energy to daily physical activity can help to improve your mood and sleep, and reduce CRF. This could be something as simple as doing a gentle walk up and down your street.
Use a diary to track your activity and score your fatigue out of 10 afterwards. If you notice that a certain activity makes you fatigued, note how long the fatigue lasts, reduce the time you do it for or break it into smaller chunks.
Build up physical activity gradually. Pick an activity that you like doing and choose a good time to do it. Set yourself a goal such as going for a 15-minute walk 3 times a week. Then build up the time you do your activity for each week. Remember that even if you start by doing 2 minutes of activity it will help.
4. Healthy eating, diet and nutritional advice
It’s important to make sure you’re getting enough calories. Under-eating will cause weight loss which can increase fatigue.
Eat regularly during the day and avoid skipping meals. Try to eat every 3 hours to keep energy levels up. Keep your meals and snacks balanced: you should have a mix of slow release carbohydrates (such as broccoli, berries and nuts), protein (such as eggs, chicken, and lentils) and healthy fats (such as avocado, cheese and olive oil).
Vegetables, fruit and whole grain foods are great sources of fibre which can help to reduce CRF. It’s also important to make sure you drink enough fluids (about 8 tall glasses each day).
Low iron levels can lead to anaemia and can make you feel tired. Red meat, green vegetables, fortified breakfast cereals, beans, dried fruit and nuts are all good sources of iron. For more advice visit the Association of British Dietitians website.
Spread food preparation throughout the day. Prepare food in advance. Sit to prepare food if possible. Take rests during and after cooking. Ask family and friends to cook for you. Use online shopping websites.
5. Improve your sleep
Try to follow a routine and go to bed and wake up around the same time each day. Avoid caffeine in evening. If you need a nap during the day, but you don’t sleep well at night, try to nap in the early afternoon and limit it to 30 minutes.
6. Other sources of support
Talk to your healthcare team. They can help you to plan and manage your time, and direct you to useful advice about managing CRF. They might also be able to help you to communicate your new limitations to friends, family and employers.
Your healthcare team may refer you to an occupational therapist to help you identify what triggers your fatigue and advise you on coping strategies. An occupational therapist can also support you to adopt strategies such as pacing, prioritising, relaxation and energy conservation.
Your healthcare team can also refer you to a specialist cancer physiotherapist. Or you can ask your GP to refer you to a local supervised exercise group designed for people with cancer. Macmillan’s exercise DVD, Move More, is great for exercising at home.
If you need advice about healthy eating, diet or nutrition, your healthcare team can refer you to a dietitian. For example, they can advise you how many calories and how much protein is right for you or what diet is best to follow.
Support and information specialists can also advise and offer information and support about managing CRF. Visit our support and information web page for more information. We have a range of health and wellbeing resources about managing CRF and run a regular online Managing fatigue workshop.
Our next twitter chat will be held during self-care week which is on from 15 – 21 November. Follow us on twitter @SupportAndInfo to find out more about it nearer the time.