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Being active when living with a brain tumour

Specialist physiotherapists in neuro-oncology, Jenny Collins and Serena Hartley, share their advice on taking part in physical activity when you’re living with a brain tumour.

After a brain tumour diagnosis, so much in your life can change that it’s natural to crave some day-to-day normality. If you enjoyed taking part in sports and exercise before your diagnosis and you feel able to, you might be keen to return to these.

You might also fancy finding new physical activities that you enjoy, or you may just be keen to be more active than you were before your diagnosis for a healthier lifestyle and want to understand the best way forward.

Even if you don’t particularly feel like exercising, doing a little bit can help with your recovery from treatment and your general well-being.

Here, specialist physiotherapists in neuro-oncology, Jenny Collins and Serena Hartley, share their advice on taking part in physical activity when you’re living with a brain tumour.

The benefits of being active when living with a brain tumour

There are lots of benefits to taking part in physical activity when you’re living with a brain tumour. However, you don’t have to be doing vigorous exercise to feel them.

Things like walking, swimming or gardening are all great ways to keep moving and can give you a physical and mental boost. Even a small increase in physical activity can improve your quality of life and bring benefits such as:

  • Better quality sleep.
  • Improved strength.
  • Improved mood and feelings of positivity.
  • Improved sense of wellbeing.
  • Improved cardiovascular fitness.
  • Reduced fatigue.

Jenny Collins explains: “Physical activity, such as doing the housework, gardening or playing with your children/grandchildren all count. So start small and aim to build up very gradually. Even small increases in physical activity can greatly improve your quality of life and help you function better in your daily activities.”

Which exercises or sports could be right for me?

If you have specific problems, such as balance difficulties or areas of weakness, and you have access to a physiotherapist, it may be helpful to seek their specialist advice for exercises to address these problems.

If you’re feeling OK and don’t have symptoms which may make participating in physical activities difficult and you’ve discussed it with your healthcare professional, there’s no reason for you not to return to activities you’ve previously enjoyed. This could be jogging, dancing or team sports, as long as you build up gradually.

If you’re starting out, however, it‘ll probably be best to try gentle-to-moderate, low-impact exercise first, such as:

  • Walking.
  • Gardening.
  • Swimming.
  • Housework.

Jenny Collins explains: “Brain tumours affect everyone differently, so speak to your healthcare team about any questions you have about symptoms or side-effects from treatment you’re experiencing before returning to exercise. That way, they will be able to offer you the best advice for your individual needs.

“You may be able to continue with activities you enjoy or modify activities to make them more manageable. They may be able to suggest new ways of being physically active. The most important thing is finding the right activity and pace for you.”

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How might treatment affect my exercise?

Surgery

If you’ve undergone surgery, always speak to your surgeon before returning to exercise. It might be that you’ll need to avoid heavy-impact activities for a while, such as jogging, running, contact sports or lifting weights. Your surgeon will be able to advise you on this and on the best ways to start gradually building up your activity.

Chemotherapy and radiotherapy

Chemotherapy or radiotherapy can increase fatigue, so while undergoing these treatments, it might be that you need to make more modifications, such as reducing how frequently or how long you’re exercising for.

It’s good to keep as active as you can during these treatments, but it may be important to seek advice from the healthcare team and/or the physiotherapist, if you have symptoms which may make this more difficult.

You might be advised to avoid swimming during radiotherapy and shortly afterwards, because skin changes can be irritated by chlorine in the pool. You might also be advised to avoid using public swimming pools while having chemotherapy, as chemotherapy can affect your immune system, meaning you may be more susceptible to any germs in the water.

Facing fatigue

Fatigue is one of the biggest barriers that someone with a brain tumour can face when wishing to take part in exercise. But contrary to how it might seem, being active can actually improve the symptoms of fatigue.

Jenny Collins explains: “It can seem counter-intuitive to try to do more physically when you’re feeling tired, but there’s a growing body of evidence that regular physical activity can help to reduce the symptoms of fatigue.

“Always start with something small, appropriate and achievable and build up from there. It’s much better to do a small amount of activity to begin with than to push yourself to do a long session of exercise, experience worsened fatigue and to be put off.”

Instead it can be useful to follow the three P’s.

  • Plan – It’s useful to plan what you’re going to do and when. For example, some people suffering from fatigue might find that they cope better doing physical activity in the morning than in the afternoon.
  • Prioritise – Try to make sure that you don’t put additional physical activity into an already busy day. So if, for example, you’re already planning to do some housework that day, perhaps don’t also plan to do a half an hour walk.
  • Pace yourself – Don’t feel you have to do a lot. Recommended guidelines advise that we do 30 minutes of moderate intensity physical activity five times a week. But that won’t be feasible for everyone to work towards, so instead do what’s right for you. Four or five minutes of activity twice a day, or even twice a week is still better than doing none at all.

Also it can help to keep your mind active. Research suggests that a key element of physical fatigue may be cognitive fatigue, so getting back to some normality and engaging in interests, activities and hobbies can be helpful.

Puzzles, such as jigsaws or Sudoku, can help to stimulate your mind. Some people say that activities, such arts and crafts, help them to feel mentally refreshed. And gardening can keep you both physically and mentally active.

Finding motivation

Many of us struggle to find the motivation to exercise, but there are certain techniques that can help.

  • Get other people involved – Ask a friend or family member to be your exercise buddy. Often people want to help, but they don’t know how. So the next time someone asks you if there’s anything that they can do, why not ask if they’ll come for a 10 minute walk with you a couple of times a week?
  • Keep an exercise diary – Whether you choose to put something down on paper, or use an app, tracking your progress and seeing improvements can be a great way to keep motivated. Certain apps will even count your steps and send encouraging messages, which can be a real boost when you’re struggling.
  • Set goals – Having a goal is a great way to keep yourself motivated. Just make sure that what you want to achieve is realistic. It might be that you set yourself a goal of doing a 15-minute walk three times a week, of being able to walk to a nearby shop, or even just standing up every hour and doing two laps of the ground floor of your home – whatever is right for you. Just having a goal in the first place is a great way to focus.
  • Make it fun – Walking groups, pedometers and exercise classes can all be other great ways to make physical activity more motivational, fun and rewarding. The more you enjoy what you’re doing, the more you’re likely to stick to, so try different things and see what works for you.

Jenny Collins explains: “Some people find getting into a routine a really useful way to stay motivated as it ensures that they’ve prioritised physical activity as an important part of their week. But symptoms vary, so it’s important to be able to adapt.

“One day, for example, you might not be up to going to the gym, but you might feel up to a short walk instead. Where exercise is concerned, it’s more helpful to make the most of your good days.”

“I’ve found that exercise has been really useful in helping me to cope. I took up running when I was off work having treatment because I was bored. It helped me to get fit, deal with stress and gave me something positive to focus on.”

Adam Carroll, who is living with a brain tumour

Getting the balance right

One of the most important factors, for anyone taking part in physical activity, is getting the balance right.

Jenny Collins explains: “It’s important not to over-do it. After you’ve finished exercising you should feel energised, but not exhausted. You might need to sit down and have a rest for an hour afterwards, but you shouldn’t need a sleep. If that’s the case, or if you’re finding that exercising is causing you problems later in the day and interfering with your daily activities, it might be that you’re doing too much.”

When exercising at a moderate intensity you should:

  • Be aware of an increase in your rate of breathing, but not feel out of breath.
  • Still be able to speak in short sentences and hold a conversation.
  • Have a bit of a glow, but not be sweating profusely.

The Chief Medical Office (CMO) has further guidelines about how much physical activity people should be doing.

Exercising at a moderate intensity might not be right for everyone, so it’s important to follow your own pace and if you have any questions about how much activity is right for you, always speak to your healthcare team.

Jenny Collins, specialist physiotherapist in neuro-oncology with South Tees Hospitals NHS Foundation Trust.

Six tips to help you get started

  1. Drinking enough is really important. Make sure you always have a water bottle with you and drink little and often while exercising, as well as before and after.
  2. 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.
  3. Don’t forget to rest in between your exercise – taking on too much can do you more harm than good. Professional athletes take rest days once or twice a week for physical and psychological recovery.
  4. Mix it up! Walking is a great place to start, but, if you can, why not try other exercises to keep things interesting?
  5. 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.
  6. Why not try something like the NHS Active 10 app, a tracker app which helps to motivate people to do brisk walking in burst of ten minutes? Or, if you feel ready to progress to jogging, why not try the NHS Couch to 5K plan to give you a gradual start?

About the authors

Jenny Collins and Serena Hartley are specialist physiotherapists in neuro-oncology, who both work for South Tees Hospitals NHS Foundation Trust.