12 pieces of heartfelt advice from those who truly understand what life is like when you're diagnosed with a brain tumour.
When you're diagnosed with a brain tumour, it can feel as if your whole world has stopped. Suddenly you're having to deal with a lot of unexpected emotions and at times it can seem as if no one, not even your loved ones, truly understand.
You might not admit your fears to your friends or family, because you don't want to worry them.
You may shy away from seeing people because you feel you have less in common with them now.
But our community want to remind you that you are not alone. They want to remind you that they too are on the same journey and that if we all stand by each other we can get through it together. That's why they have chosen to share with you some of their experiences on coping with a brain tumour.
1. Join Support Groups
“When I was first diagnosed, my instinct was to protect those closest to me. I was more worried about my daughter, mum and sister than myself, so I tried my hardest to put a brave face on. But the truth was I felt as if my whole world had been turned upside down and I needed to talk it through.
I would recommend that anyone who is diagnosed joins support groups, whether that's face to face or on platforms like Facebook. When you're diagnosed you feel completely on your own, and it's important to know that you're not." Pip Whitmore
2. Write it down
“Whether you jot some notes down, start a diary or a blog, writing about how you're feeling can be really cathartic. For me, getting everything down helped me to process all that was happening to me and even made me realise how I was truly feeling. There were things I couldn't say, even to those closest to me, but writing everything down helped me to get it all out in a totally safe and honest way." Jennifer McCrea
3. Set the tone
“I think being mindful of still actively engaging with others as you always would can be beneficial when you're facing a difficult situation. I didn't want people feeling awkward or tip-toeing around me and humour was a useful tool to normalise things.
For example if I missed a goal playing football with friends, I might joke: 'hey, it's not my fault – I've got a brain tumour.' Setting the tone to others about how you are handling your diagnosis allows them to better understand how you want them to handle it too." Peter Moreton
4. Set goals
“It can be useful to set yourself targets. Instead of just getting to the next scan appointment and having my life marked out like that, I try and think what I can achieve within that time. So I might set myself a target like trying to run a 5k before my next appointment. That way the tumour does not define me." Jennifer McCrea
“Our family found it really useful to use a mindfulness app. This type of meditation helps you to focus on your breathing and keeps your mind present in the here and now. When I feel my thoughts starting to race it's really useful to be able to put my headphones in, do some meditation and find some quiet, calm again." Pip Whitmore
6. It's OK to feel the bad days
“Your whole life has changed. You're allowed days where you feel bad – just remember to look after yourself on those days. Have a nice bath and get plenty of rest.
Personally, I find that sleep soothes me, but do whatever works for you. All that matters is that you allow yourself that time." Jennifer McCrea
7. Consider seeking help
“When you have a brain tumour, people around you can tend to avoid the subject. I wanted to talk about my diagnosis with people but I didn't know how to approach it.
My advice would be to consider getting independent help as soon as possible. I only accessed counselling recently, years after my diagnosis, and I wish I'd spoken to someone sooner." Derek H
8. Update everyone at once
“I knew a lot of people cared about the results of my scans or how my treatments were going so I decided to start sending short emails to everyone at once. It was a manageable way of keeping everyone in the loop without having to send lengthy messages one by one." Peter Moreton
9. Appreciate the little things
“When you're diagnosed with a brain tumour it's normal to feel differently about life. Suddenly so much of what used to be part of your day-to-day life can feel trivial. But take time to remember that there can still be so much joy in a lot of simple things.
Going for a walk in the sunshine, immersing myself in a book or watching something funny on TV are all little things that have helped me to feel better on tough days." Pip Whitmore
10. Be present for the present
“Since my diagnosis, of course there have been difficult days but I've also had the best days of my life. I've got married and welcomed my two beautiful daughters into the world. Some things in the future are out of our control, but we can try to keep enjoying the present.
There is still so much happiness to be found in everyday life. Every moment that I spend with Bella, Louisa and Christina is proof of just that." Peter Moreton
11. Let people know it's OK to not know what to say
“Some people slowly stopped messaging me after my diagnosis because they didn't know what to say. But what I needed most from people was to be there for me no matter what. Even if that meant just coming over and sitting in silence with me.
A lot of the time my friends didn't know what to say or do but I think by being upfront early on with people, and letting them know that that's OK, they are more likely to stay in touch and make the effort." Pip Whitmore
12. Remember you're not alone
“Remember that it is normal to feel like you can't cope some days. It is normal to feel doomed. But I promise you that the journey you're on is not as lonely as you think it is. You are not alone.
I have met hundreds of people affected since I was diagnosed, many of whom I am still friends with. So whether you join an online community, use the support line or find a local support group, never be afraid to reach out and to express how you're feeling. We are all here to help each other." Jennifer McCrea
We would like to say a big thank you to everyone who has taken the time to share their advice and experiences with us. Each one has done so from the kindness of their heart in order to try to support you on your own personal journey and we are incredibly grateful.
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.