Watch Bella's story about her experiences with fatigue and how she learned to cope with its effects, after she was diagnosed with an astrocytoma in 2007.
Fatigue - a persistent feeling of being tired, weak, worn out, slow or heavy. 'Cancer-related fatigue' is often talked about, but less acknowledged is that people with 'non-cancerous' (low grade) brain tumours also experience fatigue.
Tumour-related fatigue differs from 'ordinary' fatigue in that it is not relieved by resting or sleep.
Not everyone with a brain tumour will experience fatigue and those that do will experience it differently – from mild, with little impact, to very disruptive to their quality and way of life.
Tumour-related fatigue (from all grades of tumour) has been described as a continuing, debilitating sense of whole body weariness. It:
Fatigue can profoundly affect your personal, social and working life, leading to difficulties in relationships, social isolation and loss or reduction in employment. This can cause financial difficulties, extra stress and more fatigue.
You are unlikely to experience all of these, but common symptoms include:
The exact cause of fatigue is not known, but there are several things that could contribute to it:
The growth of a tumour (any grade) and the body's response to it, involves the destruction of tumour cells and the repairing of tissue, which requires much energy. Your body is working harder, diverting energy normally used on everyday living to fight the tumour.
The side-effects of surgery, radiotherapy, chemotherapy and medications, such as steroids and anti-epileptic drugs can all include fatigue. Your body needs to divert energy to repair changes in body chemistry or damage to healthy tissue that some treatments can cause.
'Cognitive impairment', such as difficulty in concentrating, remembering things or solving problems, is common in people with brain tumours. Trying to overcome them can be extremely fatiguing. Then being fatigued drains the energy required for cognitive functions, and so a vicious circle is created.
Around 60% of people with a brain tumour will experience a seizure at least once. You are more likely to have seizures if you have a low grade tumour. Common symptoms after a seizure include feeling tired or exhausted. You may sleep for minutes or hours.
Having seizures, and being diagnosed with epilepsy and a brain tumour, can be overwhelming. The mixture of emotions you may feel can add to your fatigue.
Living with any grade of brain tumour can cause a huge amount of stress and anxiety, or depression. Dealing with the diagnosis and uncertainty, particularly if you have a low grade tumour and are on 'watch and wait', takes up a lot of energy and can leave you feeling physically and mentally exhausted. It can also affect your quality of sleep, leading to fatigue.
Treatments can affect your taste, appetite or digestion, making it difficult to eat the amount or variety of food needed to aid your recovery. If you are taking in less calories than you burn, it can leave you feeling very tired.
Dehydration (not enough fluids in your body) can be caused by being sick (vomiting) or not drinking or eating enough. Dehydration causes a change in salts and minerals in the body called electrolytes, which are important in controlling fluid balance. This can make you feel tired.
Dehydration, in turn, can make you vomit, causing a further loss of fluids and electrolytes and making you feel more tired.
Dealing with continual pain, such as headaches, can wear you down, causing fatigue. Being fatigued, in turn, can make it more difficult to cope with and manage pain. Another vicious circle.
There is not a cure for fatigue, but many people improve within six months to a year after treatment. Within that time, however, it can be debilitating, and some people do experience it for longer.
Your health team can help with elements that are treatable e.g. pain, anxiety, depression, anaemia, or refer you to other specialists that can help e.g. counsellors, support groups, complementary therapists.
Fatigue can form a vicious circle with the side-effects of brain tumours and their treatments. If you can work out what makes you fatigued, you may be able to find a way to break the circle.
Many people have found the 'three P's' helpful - prioritising, planning, pacing.
Write a list of activities that you do regularly
Assign priorities to them, with number one being the most important to you.
If you find this tricky, alternatively split the activities into four categories:
I have to do I want to do Someone else can do Don't need doing at all (or not so often)
Keep a fatigue diary
Keep a diary of your activities and when you feel fatigued to identify possible triggers and patterns in your energy levels.
Use this information, with your list of priorities, to plan your day.
Set yourself realistic goals
Goals give a sense of purpose, and achieving them makes us feel good, but don't be too ambitious.
Make an action plan, carry it out, change it (if needed). Reward yourself for your achievements.
Break down your tasks into smaller, manageable chunks
Use the categories in the prioritising section to break one large or more difficult task into manageable chunks.
Take frequent breaks
Plan short rest breaks throughout the day, but try not to sleep during these rests, as this could affect your sleeping pattern.
As a guide, rest for 10 minutes in every hour and change activities after an hour.
Stop if you are getting tired
Review and amend your plan later.
Keep 20-30% energy in reserve
'Spend' and 'save' energy wisely e.g. shop online, or ask others to help you.
Other suggestions to help you cope with fatigue:
Stay physically active
Exercise, if only for five minutes. Gentle to moderate exercise, e.g. walking, gardening or swimming, can give individuals living with tumours, more energy, reduced pain, better sleep quality and an improved sense of well-being. It can also help to stimulate appetite.
Find a type and level of exercise you can manage and would enjoy doing most days of the week. After the exercise, you should feel energised, not wiped out.
Keep your mind active
Puzzles or activities, such as arts and crafts, can help to stimulate your mind and leave you feeling mentally refreshed. (Cognitive fatigue can be part of physical fatigue.)
Have a regular sleep pattern
And avoid sleeping during the day.
Avoid caffeine and alcohol close to bedtime, and have your bedroom at a comfortable temperature.
Avoid using back-lit devices/screens, (phones, laptops, Kindles, TVs) within 1-2 hours of going to bed. Their light delays the release of melatonin, a hormone which helps you fall asleep.
If you are unable to sleep after 30 minutes, get up, go to another room, read or listen to music until you feel sleepy. Then repeat your getting ready for bed routine again.
Eat like a marathon runner!
Your diet is important. Pasta, fruit and whole-grain breads provide long-term energy - little and often will help keep your energy levels stable, particularly if combined with vegetables, dairy and a small amount of protein.
Prepare your food sitting down, use frozen vegetables or pre-cut foods, make large amounts to freeze for future meals, ask family/friends for help.
Manage stress and anxiety
These use a large amount of energy. Learn to recognise your triggers and your body's response to them.
Relaxation techniques e.g. mindfulness or breathing exercises, or relaxation aids e.g. colouring books, gentle music DVDs, herbal pillows, can be helpful.
Your GP can provide information, and refer you for counselling, if needed.
Find information and talk about it
Analogies about conserving energy can be useful when explaining how you feel:
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