Improving Brain Tumour Care surveys share your experiences and help create change

Julie’s story

Julie’s daughter, Billie-Rae, was diagnosed with a brain tumour in October 2014 at the age of 22. In 2015, Julie took part in The Twilight Walk for the first time and has been walking with hundreds of others every year since.

Billie-Rae had no symptoms. It was only when she bumped her head at her flat that a scan revealed the brain tumour, which became known as Fifi. I didn’t know how to handle the news. Who really knows how to sit with their child and hear that there’s something menacing in their brain?

I knew that I had to do something. As a mother, I wanted to protect Billie-Rae and try to fix it all for her. Brain tumours are cruel but that didn’t mean I couldn’t do anything at all to help. As I began to process the pain, I became a mother on a mission.

I made sure that Billie-Rae had everything she needed – toiletries, comfortable clothes, new bedding, new anything which could help her through the surgery and recovery. I knew that I had to keep my mind busy to cope with the worry and stress when neither of us could think straight.

When it comes to brain tumours, no one has all the answers. But any information is better than none – a battle plan wasn’t possible until I knew what we were dealing with. So, turning to The Brain Tumour Charity for help, support and advice made perfect sense.

I realised it was vital to look after our physical and mental health following Billie-Rae’s diagnosis. When navigating that alien world, and the dark thoughts and fears that cropped up, the trained professionals, counsellors and amazing support team at The Charity became a lifeline for myself and Billie-Rae. Reaching out for help was good, healthy and positive.

The Twilight Walk became a means of looking after my health too. It was one of the only ways in which I knew that I could do something to help. I couldn’t stop Fifi or the pain that Billie-Rae was in, which was agonising as a mother. So, I walked. Putting one foot in front of the other became my way of taking control. They were small but mighty steps on the right path to change, to find a cure for this horrific disease and to help other families like mine.

The first time I took part in The Twilight Walk was in 2015. I found that there was something powerful about the simplicity of the walk. It was 10km, so it wasn’t tramping through the wilds and it could even be a gentle stroll if I wanted it to be. But it was an army all going in one direction for a single cause.

We were all bonded by shared experiences and stories that nobody else could possibly understand. I walked, talked and found a sense of belonging. We were all connected by the brutal reality of brain tumours. We didn’t choose to have this connection but it was there as soon as we put that red t-shirt on.

No one crosses that finishing line solo. I made new, but lifelong friends, like Bridget, who ensured we all got through it together, because for me, not finishing wasn’t an option. The people I met on social media became my walking buddies and helped me get through.

The relief at the end and the release of emotions including pride, fulfilment and empowerment hit me. It’s okay not to be okay, and I knew I had to embrace all aspects of the experience.

No mother should have to sit in a day room while the doctors delve into their child’s head. Even six years on from that original diagnosis, and with Billie-Rae now fit, healthy, recovered and very much moved on with her life, things are still difficult and, at times, unbearable when it comes around to annual scan time. I know I’ll only find peace when Billie-Rae is given that all clear sign-off and when the scans, followed by the terrible waits for results, are over.

Until that day, I’ll smile. Accept help from friends, family and The Brain Tumour Charity. Laugh at the crazy times that still happen. Beam at Billie-Rae’s beautiful, happy face and the kick-ass attitude she has. One day she’ll say, “Brain tumour? Yeah, I had one of those. She was called Fifi and I didn’t like her much – and I still don’t like the name.” Yes, she’s a fighter – she’s her momma’s girl all right.

Be part of our movement

This year, The Twilight Walk is going virtual. We may not be walking side by side this October, but you can still use your strides to make a difference.

Walk it your way – at a time or place special to you and your loved ones.