Have you been diagnosed with a brain tumour? Order your free information pack.

Top tips for coping with change

Our community and Clinical Nurse Specialist at King’s Hospital London, Charlotte Robinson shares top tips to help you cope with change.

A group of young adults enjoy lunch together at one of The Brain Tumour Charity's Young Adult Meet Ups for people aged 16-30 who are affected by a brain tumour diagnosis.
A group of young adults enjoy lunch together at one of The Brain Tumour Charity's Young Adult Meet Ups for people aged 16-30 who are affected by a brain tumour diagnosis.

The diagnosis and treatment of a brain tumour can lead to changes in your appearance or to your emotions, which can feel overwhelming. However, there are things you can do to make these changes more manageable and to improve your day-to-day life.

Focus on a healthy diet

Charlotte says: “If you’re on steroids and are noticing weight gain, then making good decisions about diet can help control your weight. However, it’s important that you focus on a balanced, healthy diet, not drastic changes or crash diets and avoiding alcohol can also help control your weight and can improve your emotions.”

Undertake gentle exercise

Charlotte advises: “To help manage your weight, try daily walks to get physical exercise in without exhausting yourself too much. This will also help you mentally and emotionally. Exercise releases good endorphins and getting out of the house and in the fresh air can help you feel better and is a nice distraction. You could also turn this into a social occasion, inviting friends and family to come on a walk with you.” Find out more about the benefits of exercise.

Find peer-to-peer support

Talking to people who ‘get it’ can make a big difference and gives you vital support. Charlotte recommends joining our Facebook groups or meet ups to help you meet others who understand. “The Brain Tumour Charity has Facebook groups, so you can talk to others who understand. They also have meet ups for those aged 16-30 affected by a brain tumour, where you can meet people your age going through a similar situation. These can be a great source of support, allowing you to bond with others who understand, no explanations needed.”

A woman feeling supported as she scrolls through the posts in one of The Brain Tumour Charity's Online Support Groups.

Join our community on Facebook

Our closed Facebook groups are a great place to connect with other people affected by a brain tumour and share your experiences.

Treat yourself

Charlotte suggests “Small things can make a big difference. So doing some little things that will make you feel good can be really beneficial. For instance, if you’ve noticed weight gain due to your diagnosis and steroids, buying new clothes that may be a few sizes bigger but fit better can make you feel more comfortable, look better and feel more confident.”

If you want to, get a wig

If you’ve undergone chemotherapy or surgery and as a result have lost your hair or have a visible scar, it can knock your confidence. Charlotte suggests “There are great charities out there to help you get a wig, if this would help you. Little Princess Trust give free (and great quality) wigs to young people (up to the age of 24) affected by cancer. You can also find fashionable hats and wraps that look great and help you feel more confident.”

Think about a phased return

Charlotte says, “If you’re able and ready to return to work or education, it’s important to phase yourself back in and talk about any additional support you might need. Have a meeting with your line manager or teacher and putting a plan in place for a phased return with very reduced hours is important. You can then build these hours up as your strength and fatigue levels adjust to the point you can return fully.”

We have employment resources and education resources that can help when thinking about returning to work or education.

Talk. Talk. Talk.

A problem shared is a problem halved, so, Charlotte suggests the same thing. “If you feel like everything is hard to manage, or that you’re feeling depressed, this is completely understandable and you are not alone. Whether it’s to a caring friend or in a support group, sharing how you are feeling can really help to reduce the overwhelming feeling of depression and anxiety. It’s also important to talk to your GP about what you’re going through and feeling, and ask for counselling if you aren’t coping. You can also speak to your CNS team, your Macmillan nurse, or your Palliative Care team. The Brain Tumour Charity also offer lots of great support to help you. So do get in touch with a member of their team if you need to.”

Find out more about mental health and how to take care of yours.

Find the funny

Kaleb, 18, explains how having a ‘sense of humour’ about his diagnosis helped him and his family cope with the emotions of his diagnosis.

Kaleb said “Of the soundbites of my hospital experiences “Squeeze my fingers” is a pièce de résistance. Making humour out of these odd snippets of speech has been an invaluable method my parents and I have used to cope with the emotional tumult of the last few years and has helped to add a laugh or a wry smile to some frightening and stressful situations.”

Don’t isolate yourself

Maintaining your social life, as well as you can, gives you the opportunity to be yourself. After all, you may have a brain tumour, but you’re still the same person you always were. Charlotte says “It’s important to still socialise with your friends and family as feeling isolated and alone can have a negative effect on your mental health.” However, it’s important to plan ahead and do activities that you feel are right for your energy levels. For instance, you may just want to do short, low-energy activities if you’re feeling fatigued. Find out more about how you can tackle isolation.

Take it a day at a time

Charlotte says “Living with a brain tumour is an emotional rollercoaster that will range from shock to denial to sadness to acceptance. But it’s important not to keep feelings and emotions to yourself, sharing how you’re feeling will alleviate worry and have a positive impact on you and your loved ones. Take each day as it comes and set targets, even something like meeting a friend for coffee. Although this can be daunting if you’re feeling depressed or anxious, starting small and seeing each day as a step forward to something bigger will help build your confidence.”