A decade is a long time by anyone’s standards, but when affected by brain tumours there is an expectation and understanding that many things can change in 10 years. It’s been over two decades since my Mum’s diagnosis and one decade since we organised our first Big Bake in 2013. This year marks 22 years since my Mum, Susan’s, initial diagnosis of an oligodendroglioma tumour and epilepsy.
Looking back on The Big Bake
I’m baking because I can’t accept the statistics that only 11% of those with brain tumours live 5 years after diagnosis, or that brain tumours shorten life expectancy by around 20 years. Harrowing statistics like these are all too common and only emphasise how crucial campaigns such as The Big Bake are in terms of driving change. Living with a brain tumour means time is never promised, a fact that can often both weigh heavy on your shoulders, but also act as a motivating force. As we mark 22 years this month since diagnosis, we are extremely grateful for my Mum to continue beating the odds, but are also painfully aware that this is not the likelihood for most living with brain tumours.
Our baking fundraiser 10 years ago is my first memory of raising money and awareness for The Brain Tumour Charity, and marked the beginning of a decade of increased involvement. At the time of our Big Bake in 2013, my Mum had undergone an initial craniotomy in 2002 and radiotherapy in 2010. As we approach the Big Bake in September this year, she has endured another awake craniotomy in 2016 and 9 gruelling months of chemotherapy in 2017. The last 22 years have been bookmarked by surgeries and treatments, but even during the periods of ‘clear’ scans, reminders of a brain tumour remain present throughout everyday life. Living with a brain tumour comes with its own set of unique challenges which can appear differently for everyone
Madelaine’s story
Much of my childhood saw a back-and-forth of my Mum being able then unable to drive, with me being too young to comprehend its correlation with the likelihood of seizures. As I was only 6 months old when my Mum was diagnosed, I don’t know a life without the presence of a brain tumour. My Mum’s brain tumour therefore didn’t hit me as a shock diagnosis, rather a creeping realisation as I grew and matured to understand the reality of brain cancer. This realisation resulted in a desire to play an active part in improving the statistics surrounding brain tumours.
Fundraising for The Charity
My introduction to fundraising for The Brain Tumour Charity provided me with a sense of purpose within a situation that could feel overwhelmingly out of my control. Although unable to change the reality of my Mum’s diagnosis, being involved in the drive for progress provided me with a community of those with a shared understanding of what we’re each going through. I began my own fundraising challenges when I signed up to skydive at 16, and followed this with school bake sales, Twilight walks, a head-shave, and trek of the Sahara Desert.
Going beyond fundraising
It was an honour to join the current Young Ambassador cohort in 2021, an opportunity which has allowed me to be involved with The Charity outside of just my fundraising efforts. I’ve since been able to represent the charity at numerous events, including two Big Brain Tumour Benefits at the Edinburgh Fringe, share my story through the charity’s social media, write blogs such as these, and become a member of the Less Survivable Cancer’s Taskforce’s Patient Advocacy Group. Moreover, I had the invaluable opportunity to meet Humza Yousaf as the former Health Secretary and advocate on behalf of the brain tumour community, drawing on my family’s own personal experiences. To see the work of the Taskforce represented in Scotland’s new 10-year Cancer Strategy has been incredibly rewarding. Working with the Policy team has resulted in attending Awareness Days at the Scottish Parliament, to meet directly with MSPs and encourage brain tumour awareness at all levels.
Final thoughts
Campaigns like the Big Bake act as reminders of how dedicated the brain tumour community are to the shared goal of finding a cure faster. A loved one facing such an indiscriminate illness emphasises how vital support is in tackling the more difficult times. Despite the circumstances, I’m thankful to have undertaken many incredible experiences and made countless friends through being involved with The Brain Tumour Charity.