To celebrate this important week, we asked three volunteers to share with us, in their own words, why they started volunteering, how they are helping us in the fight against brain tumours and what life looks like when they aren't volunteering with The Charity.
After I was diagnosed with a Grade 3 Anaplastic Astrocytoma in June 2017, I wanted to share my story and help give something back for all the help and support I had received from hospital staff and consultants. I first heard about The Brain Tumour Charity from the team at Addenbrookes Hospital who pointed me in the direction to find help, support, and advice.
I’ve volunteered with The Charity since then, as part of the Research Involvement Network and also using my experiences to share feedback on new information resources that The Charity are developing. It’s been great to understand more about the work that goes on behind the scenes.
The Research Involvement Network helps to enhance the scientific work being done by researchers, by providing a vital, different perspective that comes from patients and carers.
Being part of the Research Involvement Network has provided me with a great opportunity to understand what is happening in the research arena.
Outside of volunteering, spending time with family and friends is my main priority, as well as my cat Eevee, who keeps me company throughout the day. I’m fortunate to have great parents and a wonderful wife, children and friends who have supported me immensely over the last four years.
My wife Libby has also raised over £2,000 through online fundraisers and by taking part in the Pretty Muddy event with her friends, something I’m really proud of.
My other priorities are keeping myself fit, healthy and in a good frame of mind. I walk a lot and go fishing, as well as volunteering at our local mental health charity ‘Don’t Lose Hope’, who run a community garden project. As I no longer work full-time, I now do more housework and cooking than I would have done before (my favourite thing to cook has to be steak, with homemade chips, mushrooms and garden peas).
I feel blessed that I am still alive and living life to the max. We take every day in our stride and, despite a few twists and turns, the new normal is just as good as the old normal.
In July 2018 my 10-year-old son Asmaar was diagnosed with an incurable brain tumour, a High Grade Glioma. This news was completely devastating for me and my family as our lives revolved around Asmaar, due to his autism. His beautiful smile, giggling, jumping around, big hugs and just being full of life is what kept us going. He was our energy!
The brain tumour diagnosis proved to be a difficult challenge for my son and for us. It was extremely difficult for Asmaar to understand and express himself as he was nonverbal. Despite this, I held my sons hand and embarked into the unknown, having absolutely no knowledge or understanding of brain tumours.
I was my son's primary carer and, due to his complex learning difficulties, I was a voice for him - to ensure his needs were being recognised in all aspects of his life. Asmaar's journey lasted for 11 months and during this period I processed many things which allowed me to recognise, think and question. Sadly Asmaar passed away in June 2019, a day before his 11th birthday.
I got in touch with The Charity the following year to find out how I could help to raise awareness and make a difference, and I am now an Involvement Champion for The Charity, which gives me the opportunity to shape and drive forward The Charity’s work, representing those who have been through similar experiences.
I feel that every person's experience of a brain tumour has something unique to offer, there is always something we can learn and progress from.
Volunteering enables me to apply skills that I’ve developed through personal and professional experience – resilience, teamwork and effective communication – but my biggest motivation to volunteer is to benefit other people and make a significant contribution towards positive change in memory of Asmaar.
Another way I have been able to do this is as a parent rep for a local parent/carer forum, which helps to support parents and carers of children with disabilities and additional needs. This role also enables me use my lived experience to help others who may face similar challenges.
Outside of volunteering I also work full-time for the civil service, but when I’m not working, I love spending quality time with my family, eating out and keeping active.
When my Meningioma was discovered four years ago, I went from having no knowledge of brain tumours to brain surgery in just six weeks. During this time, and my subsequent recuperation, I found The Charity to be a massive help and comfort, mainly through the Facebook support groups and website.
The Charity helped address my concerns and the many shared experiences provided real-world guidance on what I was going through and what I could expect in the future. This gave us hope that there is life after a brain tumour, which was massively helpful. The support from the groups was a real lifeline to me and my family, and I know this is the same for many others going through this journey.
Once my treatment was successfully completed, I vowed to try to help others who have been impacted by the diagnosis and treatment of a brain tumour and who are looking for emotional guidance and support at a time of dire need. One of the ways that I now volunteer with The Charity is as a Digital Peer Support Volunteer, a role which enables me to support others like me, as well as carers and families, in the way I found so valuable.
It’s a wonderful feeling being able to help others, especially as I can relate to those with brain tumours due to my hard-won experience.
Supporting The Charity gives me immense satisfaction, and is a huge source of pride. Now the priority of working and raising my family is less intense I have something else to give me a real purpose.
Outside of volunteering, my other priorities are to be there more for my family, spending time enjoying each others company (I hope!) and keeping the bank of mum and dad topped-up to support my children through Uni and into their careers.
Once Covid is over, we hope to travel more, and to take more time enjoying all the things we weren't really able to before my treatment and retirement. We also want to have fun along the way!