When you're living with a brain tumour or supporting someone, it can be hard to prioritise your wellbeing. But looking after your emotional, physical and psychological needs is important.
Here, clinical neuropsychologist Dr Sophie Williams and our community share their tips on how you can make this year the best it can be
1. Try to get into a regular sleeping pattern
Whether you're struggling to get to sleep or battling fatigue, getting into a regular sleeping pattern can be really beneficial. Where possible, try going to bed and getting up at the same time every day.
A good sleeping routine can encourage better quality sleep which improves mood, concentration, memory and energy levels.
“How we respond to fatigue can have a significant effect on our mental health and wellbeing. For example, if fatigue is ignored, people often struggle to fulfil their usual roles and notice themselves making more errors. In contrast, stopping all activities due to fatigue is likely to result in low mood, low self-esteem and can exacerbate poor sleep. Instead, a helpful response is learning to 'manage fatigue', such as establishing how “quickly your battery is used up and/or restored" and developing a routine to complement this. This might involve having higher activity times followed by rest periods and getting into a regular sleeping pattern. Despite a slower paced routine and increased rest periods, patients often describe improved productivity and self-esteem when successfully managing fatigue."
Dr Sophie Williams, Clinical Neuropsychologist, Royal Victoria Hospital, Newcastle
3. Enjoy gentle exercise
Everyone knows that exercise is great for improving mood, increasing energy levels and reducing stress. But you don't have to run a marathon or climb a mountain to feel the benefits. Gentle exercise like walking, swimming or gardening is a great way to improve your wellbeing.
Make sure you listen to your body and only do what you can - even if you can only manage five minutes, it will make a difference to how you feel.
“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."
4. Prioritise relaxation
It's natural to feel stressed and anxious when you or a loved one is living with a brain tumour. But taking the time to do something that you find relaxing such as meditation, yoga or Reiki can make a big difference.
“I find listening to a mindfulness meditation app before bed a really effective way to switch my mind off. At hospital if we're waiting for a result or an appointment, Mum, Pip and I will sit doing it together. Now when Pip starts worrying about the future, saying: 'What if this? What if that?' I'll always suggest that we listen to the app. Mindfulness helps to remind us to live for today."
Kate Bowen, whose twin sister, Pip was diagnosed
6. Try to laugh when you can
A brain tumour diagnosis is a major life event which can have a significant effect on your emotional wellbeing. But laughter, where possible, can be a useful tool to help lower anxiety and release tension.
Scientific studies have shown that laughing releases the chemical serotonin in the body, the same chemical stimulated by most antidepressants.
“It might not be for all, but having a good sense of humour certainly helped our family to cope. From the day Mum was diagnosed, we found a reason to laugh every single day. It didn't matter how awful the situation was, we always found something to make us giggle. We always said, 'Mum is living with cancer, not dying from cancer'. And we wanted to make sure that she got to live with as much happiness and laughter as possible."
Heather Gillies, whose mum, Chris, was diagnosed
7. Practice self-compassion
It can be extremely frustrating if you notice a change in your cognitive abilities such as struggling to concentrate or to remember things, so it's important to be patient and kind to yourself.
Consider using memory aids such as setting reminders on your phone, making lists or having notebooks around the house that you can jot things down in.
“Difficult thoughts and feelings are a normal response following the diagnosis of a brain tumour. However, how we respond to these feelings can significantly affect our psychological wellbeing and resilience to cope with this journey. Evidence indicates that our emotional wellbeing is enhanced by something called “mindful self-compassion”. The term ‘mindfulness’ refers to a moment-by-moment awareness of our thoughts, feelings, bodily sensations and surrounding environment. This means that when practicing mindfulness, the patient’s thoughts are in the present moment, as opposed to revisiting the past or attempting to predict the future. Self-compassion refers to responding to these difficult thoughts and feelings with openness, curiosity, kindness, sympathy and understanding."
Dr Sophie Williams
8. Put time aside to have fun
Making time to have fun with the people that you love is not only a great way to relax and strengthen relationships, but it can also provide a welcome distraction from all the thoughts racing through your head.
“It's so important to still have fun together. Every Friday night we have a date night for Pip, where we all get together, watch TV and have a good laugh. On those nights we don't really talk about Pip's diagnosis. We just focus on spending time together and enjoying each other's company. Family time is family time. A brain tumour can't change that!"
10. Keep talking
When we're going through a tough time, talking can help to alleviate stress and remind us that we're not going through this journey alone.
Our Facebook groups offer a safe online environment for our community to access peer-to-peer advice, whether you're a carer, young adult, parent or living with a brain tumour.
The Charity also offers an Information and Support line, which can be especially useful if you're struggling to talk to friends or family about how you're feeling.
“Support lines can be a lifeline. I often felt as if I didn't want to talk to my family about how I was feeling. Everyone had their own worries and I didn't want to burden them with mine. But when I rang a support line I could truly open up about how I was feeling and what I was afraid of. It made a big difference."
“Our daily activities can have an enormous effect on our mood and self-esteem. You may notice that some activities increase your risk of anxiety and worry, whereas others may alleviate it. For example, when alone, you may find that you can get stuck going over the same anxiety-provoking thought, whereas just discussing this worry with a friend helps you to feel supported. Similarly, you might find that going to your favourite place, such as the beach, provides a different perspective, or preparing dinner for your children provides a sense of purpose.
“Developing an awareness of what makes us feel more positive and building on this is encouraged. If you are unable to resume your former job, there may be some new valued activities you would like to introduce. A recent patient of mine started helping with a coffee morning at a local old age home. Although only taking on two hours per week, she found that supporting this lovely group of elderly people in a friendly and caring environment very much lifted her spirits. Similarly, another patient who loved animals started helping out in a dog shelter. There is good evidence that helping others can make us feel very good!"
Dr Sophie Williams
12. Try to think positively
“The uncertainty of living with a brain tumour diagnosis can make it difficult to stay upbeat at times, but reflecting on the positives from each day, however small, can have a beneficial impact on your wellbeing. One way to achieve this is by keeping a gratitude diary. Jotting down three positive things from your day helps us to appreciate and take joy from the smaller things in life, which makes us feel better about life. These need not be big things; something as simple as being at home when a parcel you've ordered arrives or getting the perfect parking spot at your local shopping centre all count!"
Dr Sophie Williams
“As overwhelming as a diagnosis like this can be, it's vital to remember that having a brain tumour does not define you. I think when you have a brain tumour it's hard not to focus on the difficulties, but Pete always reminds me to concentrate on the things that we do have. During tough times that can be a real help."
Christina Moreton, whose husband Pete was diagnosed
We are incredibly grateful to everyone who has taken the time to share their advice and experiences with us.
Need some support?
Our Information and Support Line offers a way to ask questions or raise concerns about a diagnosis, treatments, including access to clinical trials, how a brain tumour may affect daily life and how you can support a loved one.