Maynards

‌Introduction to the Maynards

The Maynards group has been set up to specifically fund research into high grade brain tumours.

Over the last year we’ve entered this unexpected brain cancer world after discovering a gliblastoma (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 brain tumours are the biggest cancer killer of children and adults under the age of 40. Awareness of brain cancer is too low, investment too little and sufferers are dying quickly and too young. Fighting brain tumours on all fronts of research, awareness and support is the only way to save lives, reduce long-term disabilities and to help everyone affected by a brain tumour.

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. That’s why I’ve become a supporter of the Brain Tumour Charity.

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 20^th 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, 20^th 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 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 and next steps

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 The Prophet’s On Joy and Sorrow.

My three other interests, that, in part, are providing good GBM distraction, are:

• Firstly, an existing one, equality, particularly a focus on women’s sport equality.  This has been reflected in my work, which has uncovered both the challenges but also the strong emotional connection to women’s sport.
• Secondly, the 15-year-old-me learnt about Proportional Representation (thank you Mrs Palmer), this has returned to my forefront. After 16 years living in a country with a better electoral system, to now return to the dated, declining democracy in the UK, has brought to the forefront the importance of ensuring our democracy is really a true democracy, with all our voices heard. We now have several MPs elected who see the value (including my bro, Charlie, woohoo!). Raising awareness and highlighting improvements has been a focus!
• And finally research into the brain cancer world. Insufficiently heard, impact unknown, progress limited. Organisation like The Brain Tumour Charity are trying to make the difference we need to see: increased voice, more investment, deeper research. I’m so grateful of the passion, the work, and the focus the Charity is creating. 

Consequently, my family and I have become supporters. We had incredibly generous donators in the Twilight Walk earlier this year, so a huge, huge thank you, and let’s keep going!