Fatigue & Depression

Tumour-related Fatigue

Although cancer-related fatigue is widely talked about, fatigue in people living with low grade tumours often goes unacknowledged.

Not everyone with a LGG will experience fatigue but it is very common and can affect anybody with any type of tumour.  You may be badly effected or it could be mild – it has been described as a continuing, debilitating sense of weariness throughout the whole body.

Tumour-related fatigue can vary from person to person and also vary in intensity at different times of the day and from one day to the next.  It can disrupt your sleeping patterns and negatively affect your emotions and cause extra anxiety.

Tumour-related fatigue cannot be seen by others, making it difficult for them to understand how it’s affecting you and also cannot be relieved by resting or sleeping. Unsurprisingly, this often leads to a lot of additional stress, which in turn causes increased levels of fatigue. This vicious cycle can profoundly affect your personal, social and working life, resulting in anxiety, depression, relationship problems, social isolation, difficulties at work and financial problems.

Returning to nursery, school or college after a brain tumour diagnosis can often be challenging for a child, their parents and teachers.   A brain tumour diagnosis can lead to the child falling behind due to time off, changes in attainment levels caused by the brain tumour and its treatment, and difficulties finding their place with peers. This can make it hard for parents and schools to know how best to support the child.

Go to https://www.cerebra.org.uk for lots of help and advice for parents and teachers on helping children with brain tumours.

‘The Fatigue Spoon Theory.
Originally created by Christine Miserandino in 2003

For many of us, our energy levels and stamina don’t even come into question.
Sure, you might have the odd day where you don’t feel like cooking dinner, but what if you had to monitor your energy levels so closely that you had to choose between taking a shower or washing the dishes? What if you worried that each hard choice could lead to someone thinking you were ‘just being lazy’?

This is where spoon theory comes in.  Spoon theory has been a popular metaphor for more than a decade among numerous disability communities. The theory uses spoons as a visual way to explain how much energy someone has throughout the day; we all start the day with the same number of spoons. Each action causes us to hand some spoons over in payment.  For most people, they can rest and recover, with a seemingly unlimited supply of spoons. However, there are others who only have a set number to last them the whole day, and once your spoons are gone, they’re gone.

Someone who is sick might start the day off with 10 spoons. Sounds great! But it’s a cold morning, and you didn’t get enough sleep last night – you’ve woken up stiff and in pain. It’s going to cost you a spoon just to get out of bed, another two to make it through a shower, and two more to get yourself breakfast. That’s five spoons down before you’ve even left the house.

You’ve already used half your energy, so you’ll need to be careful choosing how to spend your spoons if you don’t want to risk exhausting yourself and being unable to make it home safely, or pushing too hard and having even fewer spoons to work with tomorrow.

This is the reality for many people who face fatigue-related illnesses or conditions. Unlike simply speaking about energy levels, spoon theory is a way for those who don’t experience fatigue-related or mental illnesses, to understand what others are going through.’

Tumour-related Depression

Depression is a very common side effect of a brain tumour. A brain tumour diagnosis is a major life event and as a result it’s very natural to experience moments when you feel distressed and overwhelmed. However, when these feelings linger for weeks and months, they could be a sign of depression.

Depression is not a sign of weakness and certainly nothing to be ashamed of. Like many physical conditions, mental illness can usually be managed or treated if dealt with appropriately.

It can range from feeling relatively low for a number of weeks with no interest in what you usually enjoy, to having persistent negative thoughts and finding it mentally and/or physically difficult to take part in your usual daily activities.
Talk to your GP – if you think you’re suffering from depression and haven’t spoken to your doctor yet, make an appointment.

Sometimes when you are feeling anxious or depressed, you can hold back from expressing your feelings to family or friends for fear of a lack of understanding or worrying them.  At a time like this you need a confidential, non-judgemental ear to listen to you and Samaritans are there for you 24/7.

It is a common assumption that Samaritans only support those with suicidal thoughts but this is not the case.  They are there to support anyone going through a difficult time in their lives.  You can contact them by phoning 116 123 (free in the UK), email [email protected] or visit one of their 121 branches in the UK www.samaritans.org

Fatigue and depression are common side effects of a brain tumour diagnosis and if you don’t do anything to combat them, they can have a negative effect on both your professional and personal life. But there are ways to help tackle fatigue and depression – and one common method is gentle, frequent exercise.

If you’re a complete beginner or haven’t been leading a particularly active lifestyle lately, make sure you talk to your consultant or GP before undertaking any exercise. Remember that it’s important to start slow, you don’t want to accidentally overdo things by doing too much too soon.

Gentle to moderate, low-impact exercise, such as walking, gardening or swimming can help. Even five minutes of gentle exercise can give people living with tumours more energy, reduced pain, better sleep quality, an increased appetite.

It’s also important to try not to stick to a rigid routine – for instance, if you’re feeling up to it, add in an extra swim per week to replace a walk, or maybe look for an aqua-aerobics class or yoga session instead. Mixing up your routine can help you stay healthy, motivated and keeps exercise feeling fun.

It must be emphasised that exercise isn’t always straightforward when you have a brain tumour. The brain controls voluntary movement, balance and gait, all essential elements of physical activity. When the brain’s occipital lobe is affected, some vision can be lost as well, making mobility more difficult. In addition, therapies can cause fatigue, dizziness, weakness and lack of balance, making the situation worse. And long-term use of steroids, which may be given to counteract chemotherapy side-effects, also cause muscle wasting.

So exercise may be particularly difficult for some people living with a brain tumour. Equally though, exercise may bring the greatest benefit. The most important thing is to do what works for you. Walking is easy to build into daily activity. Others choose yoga, Tai Chi, cycling, swimming or dance classes like Zumba.

If balance is a problem, exercises can be done whilst sitting down. Or practice standing while lightly holding on to a kitchen worktop or heavy piece of furniture. Let go of it intermittently, but stay close enough so you can grab onto it again if you need it.

Movement is more effective than standing still. For instance, it’s generally better to raise yourself up and down on your heels repeatedly, rather than to practice balancing on one leg.  Exercise in short sessions for three to five minutes a few times a day, rather than longer single sessions.

Exercises to try

Just doing something is a start. Why not kick-off with a 20 minute walk each day and try practising relaxation techniques? You could try yoga, tai chi, or mindfulness. Many people also find that taking up a new hobby, increasing their exercise (even just regular short walks) and volunteering are great ways of building their self-esteem, reducing isolation and improving their feelings of self-identity and value.

Top Tips for starting exercise

Drinking enough is really important. To keep yourself in tip-top condition, make sure you always have a water bottle with you and drink little and often whilst training, as well as before and after.

• Before starting any exercise, take time to warm up and cool down afterwards by stretching. This will prepare your body for exercise and greatly reduce your risk of injury.
• Don’t forget to rest in between your exercise – taking on too much can do you more harm than good.
• Walking is a great place to start, but why not try other cardiovascular exercises such as swimming, cycling or dancing to keep things interesting? You could also add longer walks into your routine once or twice a week, walking at a different pace or tackling some hillier terrain from time-to-time.
• Make sure you have fun!  Exercise should be an enjoyable experience, not a chore, so if you’re really not getting on with a particular type of exercise after a few goes, give something else a go instead.
• Exercise is much easier if you’re doing it with a friend or family member and you’re more likely to keep it up if someone else is relying on you to be there. Would someone be your walking buddy?  Of course if you own a dog you’ll always have a faithful friend by your side!

You might also find that some mental exercises will also help improve your fatigue or depression, so try activities that can help to stimulate your mind, such as puzzles or arts and crafts.

Volunteering

Volunteering offers vital help to people in need, worthwhile causes, and the community, but the benefits can be even greater for you, the volunteer. Volunteering and helping others can reduce stress, combat depression, keep you mentally stimulated, and provide a sense of purpose. Volunteering doesn’t have to involve a long-term commitment or take a huge amount of time out of your day. Giving in even simple ways can help those in need and improve your health and happiness.