Volunteers Week reflections after the Eastenders brain tumour storyline

10 August 2023 | Support, Blog, Campaigning and research, Volunteer

Our volunteer ambassador Heather shared some thoughts for Volunteers Week on her own brain tumour experience over the past ten years.

I don’t normally watch the BBC soap opera ‘Eastenders’, but the recent story following the character Lola, from her diagnosis of brain cancer (glioblastoma multiforme) to her death aged 26, has given me cause to reflect on what I’ve experienced and seen since I was diagnosed with a brain tumour back in 2010.

The storyline has led me to think about my own experiences being involved with the brain tumour community, and the lessons I’m still learning.

My little beast is a meningioma. It has wrought havoc at times and cost me my career as a nurse, but it hasn’t killed me so in that regard, I am so very lucky. Also having the privilege of volunteering with Brain Tumour Support has helped me too, as it’s given me a role, to be useful (I hope!).

Brain Tumour Support celebrates its 20th anniversary this year and continues to grow, providing support for those affected by a brain tumour. Its founder Tina Mitchell Skinner started the charity, after her late husband Paul, who died from brain cancer, made it his wish that there would be an organisation that can support those with brain tumours, as there was nothing back then for support, especially as brain tumours bring their own peculiarities and specific needs. It was originally called Hammer Out, and the name change came as the charity progressed.

Now, a decade later since I first went to a support group meeting at St Austell, I can honestly say ‘BTS’ has supported me through my own ups and downs and continues to do so. I’m not as active as I would like to be at the moment, but it’s good to know they will still be there and did literally save my life a few years back when I felt positively suicidal having to deal with the Department of Work and Pensions.

The other thing that I’ve become acutely aware of is how poorly funded brain tumour research is in the UK, and I’ve attended a few meetings at Westminster at the All Party Parliamentary Group on Brain Tumours (APPGBT) organised by Brain Tumour Research (my local MP Derek Thomas chairs the group). I attend as an ambassador for Brain Tumour Support, but find I would like to get more involved, as not only getting the funds in the first place but also releasing them to researchers is like getting blood out of a stone! They do great work and one of the research centres they fund is at the John Bull Building, Derriford Hospital, and they research my type of low-grade tumour. Again, I learned much, not only about research needs but also about living with the condition. Some of it I found shocking in regards to how brain tumour patients are regarded, but it is also inspiring.

Brain tumours are complex things since there are more than 120 different types. Most that I saw as a nurse were secondary to other cancers, but these should not be dismissed either due to the unique problems a brain tumour can bring. I’ve seen that and come to learn so much more, and that will never stop. Lola’s journey and eventual death do bring home the harsh realities of brain tumours with the fact that the disease can hit anyone and is no respecter of age. With my own journey, I’ve faced a different harsh reality, that a low-grade (sometimes misleadingly called ‘benign’) brain tumour can be life-changing in so many other hidden ways.

One certainty, no matter what type of brain tumour you or a loved one is faced with, is that connecting with people who understand can make a crucial difference. Plus if you can do something positive with your situation, in my case as a volunteer, you often find new purpose and that the process of helping others actually helps you too!

Heather Taylor-Nicholson, June 2023

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