12 pieces of heartfelt advice from those who understand what life is like when someone you love has a brain tumour.
When somebody you love or care about has just been diagnosed with a brain tumour it can feel terrifying. You desperately want to do all you can to help or support them but often it's very hard to know how. Suddenly your whole life has changed and you might feel that no one truly understands what you're going through.
But there are people who do. People who know all too well about the feelings of helplessness and worry and who have lived with the fear, anger and injustice that this should not be happening.
These people know this because they have lived it first-hand. And now they want to use their experiences to help you.
Here, our wonderful community share with you advice and coping strategies they wish they had had when their loved one was diagnosed.
1. Ask anything
“Don't be afraid to ask anything during appointments. However silly it might sound to you, every question you have is valid and I'm a firm believer that knowledge is power. When Pip was diagnosed, I threw myself into researching her illness. I read books, contacted specialists and left no stone unturned.
Obviously this approach might not be for everyone, but for me it helped me to cope. I needed to feel useful and it was a great comfort knowing that I was doing everything in my power to help Pip."
Kate Bowen, whose twin sister, Pip, was diagnosed.
2. Don't think too far ahead
“Discovering somebody that you love has a brain tumour is a huge shock, but as difficult as it is, try not to get stuck on the 'headline' – or in other words the diagnosis or prognosis.
You can waste time and energy going over and over what the outcome will or might be, when really what your loved one needs most is for you to be present here and now."
Clare Gregory, whose daughter, Olivia, was diagnosed.
3. Keep things calm
“If your mind's racing and you're feeling overwhelmed, try to create a calm environment around you. One technique our family used was to listen to classical music. When any of us were feeling anxious or upset we'd put a relaxing soundtrack on.
We also used to give Mum a massage or a foot rub too, which helped her unwind and enabled us to feel useful. Being in tune with each other's needs as a family has really helped. From day one we all acknowledged that a tough time lay ahead."
Heather Gillies, whose mum, Chris, was diagnosed.
4. Ask for hands-on help
“Often people want to help but they don't know how. I find it useful to tell people exactly what I need and to ask for hands-on help as much as possible. As well as my daughter, Tayen, I have three sons to look after and it can be difficult trying to juggle it all. I think people like knowing that they can do something practical to help."
Kali Gilbert, whose daughter, Tayen, was diagnosed
5. Choose one special confidante
“Find someone that you can say all the negative, scary and angry stuff to – not necessarily your partner, but a close friend, relative or just someone who can handle you saying your worst fears for your loved one, without telling you to be positive.
My friend knew just to carry on talking when I got upset and that I didn't want a cuddle!"
6. Plan only what you can
“I find planning the things I can control, such as making meal planners and working out my childcare around hospital appointments useful. For everything else, I just try to go with the flow.
I used to get so nervous and anxious over procedures and appointments and a lot of the time my worries were bigger than they needed to be. Now I try to just live in the moment."
7. Listen to your loved one's fears
“It's important to allow your loved one to confide their fears in you. So whatever Pip wants to talk about, even if I find the topic really difficult, I Iisten. I make sure that I go to all of her appointments and scans and I always remind her that we're in this together!"
8. Let it out
“Crying is a good release and makes room for you to deal with the tougher stuff. Obviously not in front of your loved one who has been diagnosed, but on your own or with someone you feel comfortable with. There's nothing that I needed the other person to do or say other than to just not try to make me stop crying!"
9. Look after yourself
“When a loved one is very unwell, we naturally put all of our love and time into them and put our own wants and needs last. But if we do this for a long time, we can become emotionally and physically depleted and find ourselves running on empty. Ensure you look after yourself and find time to relax and enjoy every day."
Sara Challice, whose husband Neal was diagnosed
10. Say what you need to say
“Say all that you want to say to that person. Some people with a brain tumour may lose the ability to converse - my husband hardly spoke a word for the last two and a half months and we should have said things before that."
Patricia Fletcher, whose husband, Rich, was diagnosed
11. Keep having adventures together
“As tempting as it can be to wrap Tayen up in cotton wool, we never stop her from doing anything. So when we have family time or day trips we make sure that she can always be included. She's an independent, stubborn little thing who refuses to be treated differently. I wouldn't have her any other way. "
12. Keep moving forward
“When Pete was diagnosed, at first I needed time to absorb the news. Yet, I quickly realised sitting around worrying would drive us crazy – we had to move ahead with life. We refused to let Pete's brain tumour become the thing that defined us. We'd always wanted children and so after a lot of talks, we decided to start a family. Years on, we now have two beautiful daughters, Bella and Louisa, and I can't imagine what our life would be like without them.
I'd advise anyone who finds themselves in a similar position to always live in the present and to keep moving forward with life. You have to find a way to ignore it and keep going day-to-day. If we hadn't made the choices that we did, we'd have missed out on so much happiness."
Christina Moreton, whose husband Peter was diagnosed.
We'd 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.