Expert benefits & money advice
Last year our free Benefits and Money Clinic helped 178 members of our community claim over £450,000!
Whether it’s waiting for scan results, changes to treatment due to the coronavirus pandemic, or generally not knowing what the future will hold, living with a brain tumour can be an exceptionally worrying time.
There are many ways to help deal with your anxiety. Here are some simple tips on coping with anxiety, taken from the experiences of patients, friends, family and carers. Find the one which works best for you.
It seems simple, but keeping busy can be a good way to keep your mind off your worries. Many people have found that starting a new hobby, taking a trip or having a day out are great distractions, while something as straightforward as reading a book, watching a film or spending time with loved ones can be a positive way to keep anxiety at bay.
Talking to others in a similar situation can be a powerful tool to help reduce your anxieties and gain support. We currently run four closed online support groups for people affected by a brain tumour and they can be great place for you to start.
We recognise the unique challenges that different people face when living with a brain tumour and have support groups for:
You may also like to share your story more widely. This may not only be therapeutic for you, but may help others who have similar worries and anxieties.
Of course, sharing widely may not be for you, but talking to selected others can still help and chatting with a close friend who isn’t in the same situation can provide a fresh perspective. Do what feels right for you!
While mindfulness may not be for everyone, it has been shown to reduce levels of anxiety in some people living with brain tumours.
Mindfulness will naturally be difficult to begin with, but it does get easier with practice - the key is to stick at it and keep trying. It’s important to remember there’s no right or wrong way to practice mindfulness.
The NHS provides several tips on their website on how to practice mindfulness:
You may find it difficult to ‘be in the moment’ and practice being mindful, but there are a number of tools that can help. Sitting meditation, yoga and tai-chi can be helpful practices to stay in the present, away from anxieties and physical resources can be downloaded from the internet – for example, free adult mindfulness colouring sheets.
If your anxiety is affecting your daily life, you may want to consider psychological therapies, such as cognitive behavioural therapy (CBT) or applied relaxation. These can offered in different ways, for example, using a self-help workbook, as an online course, one-to-one or in a group.
CBT helps you recognise and overcome your anxious thoughts by changing negative patterns in the way you think and behave. Although it’s sometimes called a talking therapy, CBT provides practical ways to improve your current state of mind rather than focusing on issues from your past.
It involves working with a clinical psychologist or other mental health professional in regular sessions over a period of time and can be provided by the NHS. You can self-refer for CBT. This means that, while you do need to be registered with a GP, they don’t need to refer you for treatment.
Applied relaxation involves learning how to relax your muscles in a particular way whenever you feel anxious. It needs to be taught by a trained therapist, who will meet you for regular sessions over a period of time. As with CBT, you can get applied relaxation therapy on the NHS and self-refer.
For NHS psychological therapies services, you can find the service provider closest to you using the online tool.
Or, you can pay to access psychological therapies services privately. The British Association for Behavioural and Cognitive Psychotherapies (BABCP) has a register of accredited therapists in the UK, and The British Psychological Society (BPS) has a directory of chartered psychologists.
Counselling Directory can also help you locate a counsellor or therapist local to you
If you do choose to pay for private treatment, it’s important to make sure your therapist is registered with a recognised professional organisation and to be aware of the cost
If your anxiety is particularly severe, and none of the suggestions above have worked or you don’t feel they are right for you, you may want to speak to your GP about medication.
There are a variety of medications that can be used to treat anxiety. Some can only be taken for a short time, but others can be prescribed long-term. Your GP will let you know about any likely side-effects and make sure any new medication won't interfere with treatments you’re having for your brain tumour.
"My partner was given anti-anxiety medication by the GP for when they're feeling really anxious. It usually helps them!"
"Try to remind yourself the scary, anxious thoughts you're having aren't facts. It's just your brain going to the worst case scenario. Try to focus on what you know for certain."
"I find the 'Calm' app helps me when I'm anxious at night and can't sleep."
"I try to focus on what I can control and to let go of the things I can't. It's a little bit of 'fake it until you make it' behaviour, but I honestly don't stress about a lot of unnecessary things anymore."
Join one of our our Online Support Communities for more tips about coping with a brain tumour diagnosis, from people who truly understand what you're going through.
We asked Dr Clare Jacobson, Specialist Clinical Psychologist at Guy’s Hospital for advice on how to cope.
If you’re feeling overwhelmed, imagine you’re in a ship that’s caught in an emotion storm. The waves are high and you feel you could drown. You can’t stop the storm, but you can focus on keeping steady until it passes. Here are some ways to anchor the ship:
1. Control your breathing
For five breaths, exhale for two seconds longer than you inhale (time this accurately). This changes carbon dioxide levels in the blood, helps process the adrenaline and has a calming effect. Focusing on your breathing also gives your mind a break from ‘worry thoughts’.
2. Use the ‘four, three, two, one’ mindfulness technique
Take a breath and notice four things you can see, three things you can hear, two things you can feel and one thing you can smell or taste. Engaging all five senses brings you back into the present moment.
3. Try worry time
Choose a specific time to worry each day, e.g. 6.00-8.00pm. If a worry thought pops into your head, notice it and label it as just that – a worry thought that you’ll concentrate on at 6.00pm. Writing down your worries during the time slot can make them feel smaller, reducing their power.
4. Change your relationship with anxiety
Create an image of anxiety, or even craft it from play dough, then start a conversation with it. What would anxiety say to you or want you to do or not do? What would you say back? What would your loved one say to it? Creating a conversation develops your relationship with anxiety and can give you more freedom.
5. Do what matters to you
It’s usually the things that matter to us that cause anxiety to knock on our door. Try to stay connected to the things you value in life. Accept that anxiety will be present, but it doesn’t have to get in the way. Do what you love alongside the anxiety, as if it’s one side of the coin and all the joyful elements of what you love are on the other.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
Phone lines open Mon-Fri, 09:00-17:00
You can also join our active online community - Join our online support groups.