Over the last year we’ve entered this unexpected brain cancer world after discovering a glioblastoma (GBM) brain cancer tumour, grade 4, and consequently limited life expectancy. But during this period we’ve also discovered both the ‘wonders’ and the ‘challenges’ of the brain tumour world.

The ‘wonders’ are the amazing people who are dedicating their lives to finding solutions and caring for those impacted. They are working in hospitals, in research, in charities to stop brain cancers dominating. They are focused on helping those inflicted so quickly, by seeking more investment, better insights and greater time exploring how to tackle brain tumours.

The ‘challenges’, well awareness of brain cancer is too low, investment too little and sufferers are dying quickly and too young. To make a fundamental difference and to save lives we need more research! 

Whilst I have a GBM, I also have a life I love, a world I’m incredibly grateful for, a history that inspires and builds my strength, and a family that I am utterly devoted to. I will fight for as long as I possibly can but want to ensure that the best is being done for the whole brain cancer community.

My story

My husband was back in Australia for a few weeks, I was here in Oxfordshire, with three of our five kids and it was 20th May 2023. We were just back from Saturday morning kids activities, my migraine was present. I have had multiple migraines every month for over 20 years, but on this occasion it was different, it got worse quickly. I came in from outside, sat on the sofa and it exploded in my head. My last thought was, that’s it, I’m gone.

Twenty minutes later I regained my consciousness to slowly discover my room no longer just had my 13 year old, 11 year old and 8 year old in it – but the ambulance crew, my brother,his wife, and later I heard a first responder who’d taken only 10 mins to get to me. Wow, I was incredibly lucky to have such a speedy response. 

That was the start of my journey. A few days later I was informed about the brain tumour. The date of the seizure, 20th May 2023, is significant, because on the same day Australian Prof. Richard Scolyer also had his seizure that led to uncovering his own GBM. Prof. Richard Scolyer, Australian of the Year in 2024, alongside Prof. Georgina Long, have spent years working on Melanoma research and have made significant, really significant, differences. Now they are working together to find a solution around GBMs, with Scolyer being the first case in their new trial.

I’m British and Australian, and very proud to be both. I’m very much hoping we can work closely with Scolyer and our broad scope of researchers to find a cure.

Unlike Scolyer, my procedure has been the standard approach: operate to remove a big chunk, then radio and chemo, followed by more chemo. The standard procedure has not changed in decades, nor has life expectancy, the average is 18 months.

What we need is more research, more trials, more exploration of Scolyer’s work; fundamentally we need more investment. 

My learnings

I’ve been very fortunate in life, I haven’t lived in fear and I haven’t suffered from anxiety. However, one fear that stewed a little longer than others was ‘discovering you were going to die’. I thought that would be the worst thing to live with. And yet, when that fear became a reality, my biggest fear disappeared. Now I knew I was going to die earlier than scheduled (!), but now I could make plans!

Limited life expectancy brings forward your priorities – a positive! The main one is my family, particularly my kids, being around as long as possible. I was 13 when my father died. It was gutting, he was a wonderful man, and everyone loved being with him. You can focus on the loss, but over time I was able to focus on the strength he gave me. It helped. In my 20s I then lost two very dear men, one I would have spent the rest of my life with, my darling Rob. My further grief grew my resilience, my inner core and my independence. It enabled me to look at life from a different perspective. I now see joy in all sorts of places. I want to be around as long as possible for the kids, but I also want them to understand On Joy and Sorrow by poet Khalil Gibran. 

Thank you so much to ‘OurBrainBank’ for the work you are doing. It is very much appreciated. 

Best wishes

Georgie Maynard