BRIAN (Brain tumouR Information and Analysis Network) is our online app to help people cope with a brain tumour. It allows you to track your entire journey in one place, from appointments, treatments and side-effects to your moods and much more. You can also share your data with anyone you trust – such as family, carers and your healthcare team – helping them to better understand your situation.
BRIAN has been designed for everyone, whether you’re living with a brain tumour, caring for someone who is, or you work in healthcare or research. You can also be a part of BRIAN if you’ve lost someone to a brain tumour by contributing valuable historical data.
Here, three users explain how BRIAN has helped them.
Peter lost his wife Wendy to a glioblastoma almost nine years ago. He signed up to BRIAN and entered Wendy’s data posthumously.
I’ve learnt an awful lot about brain tumours since Wendy died, but it would’ve been better if that knowledge had been available while she was ill. Having information about side-effects through BRIAN, from carers who have been there with their loved ones at 4am, could have an incredible impact on easing part of the burden and distress of the disease.
BRIAN can make this information easily accessible and simple to add to. It can become such a helpful and supportive community and give some comfort to those who dread waking up each morning to find out what this disease will throw at them. It helps to know you’re not the only one and to be able to share coping mechanisms. BRIAN also contains an enormous volume of data that can cut down the time and cost of research projects which will be of great benefit.
It was simple and quick to sign-up to BRIAN and for me, as an ex-carer, it’s therapeutic. I have a unique perspective and it channels my indignation at having lost my wife 30 years too early. Personally, being able to help others to avoid some aspects of this awful disease is satisfying and motivating.
Molly was 18 when she was diagnosed with a grade 1 pilocytic astrocytoma. She found out about BRIAN from The Charity’s young adults’ Facebook group.
I felt using BRIAN was a good way to keep track of things, as I’ve suffered with memory issues since starting treatment. I’ve entered medication, symptoms, side-effects and mood tracking information. This has been really useful for me as I’ve just had to fill in a Personal Independence Payment reassessment form and found it helpful to look back, as my memory isn’t great.
It really helps people with memory loss (most people I know with a brain tumour experience this) to keep all of their information in one usable and trackable place. I hope that I can continue to use BRIAN to store and track how I’ve been doing, and that it will help people in the future by showing how brain tumours affect individuals, and finding what most people struggle with, so that accessing specific help will be easier.
I’m now keen to start using the feature where my healthcare professionals can access my information to see how I’m doing.
Mike’s daughter Elsie is two years old. She was diagnosed with a pilomyxoid astrocytoma last May.
We signed up to BRIAN so we could organise Elsie’s treatment and her medication regime, which is complicated. Elsie’s diagnosis has been life changing. She’s now six months into 18 months of chemotherapy and we’ve had to change our working patterns to accommodate her treatment and all the challenges this brings. The process is emotionally exhausting but we draw strength from Elsie who battles through each hurdle with a smile, a giggle and a cuddle.
BRIAN has been useful to keep a check on Elsie’s side-effects from treatment and we’ve also been completing the quality of life questionnaires. Keeping a record of appointments and treatments has reminded us of her progress so far. It helps to keep track of the burden of treatment and puts things into perspective when things are difficult.
We also wanted to share Elsie’s information so researchers can better understand what’s important to families. BRIAN is a great tool to track your child’s treatment and it’s good to know the information will help support other families and improve quality of life for other children with brain tumours going through treatment.