In Charity News, Fundraising

Why brainstrust?

I have a brain tumour. Grade 1, I am told. It is slow growing and non-invasive, however
anything inside the brain that shouldn’t be there can obviously affect and change your life in
a devastating manner. I live with the fear of further growth causing swelling on the brain and
the catastrophic problems this will cause.

I was diagnosed 7 years ago. I had to terminate my employment as an Administration
Manager 6 years ago as I was no longer able to cope both physically and mentally with the
pressures of the job and cope with the daily symptoms of the disease. I suffer chronic
fatigue, pain and terrible migraines. Due to the position of the tumour it is largely inoperable.
I am however on what’s called the ‘Watch and Wait’ programme. The neurosurgeon has
confirmed that it is growing and will continue to do so albeit at a slow rate, it will eventually
reach a state where part can be removed through gamma knife surgery. This would however
not remove all of it, just that part that is accessible.

Dealing with the shock of hearing this devastating diagnosis has been very difficult for me,
my family and my friends and it has taken a very long time to accept that my life has
changed completely, and I can’t do a lot of the things that I always loved to do.

I turned to social media and search engines for help, advice and as much information as was
available, and it was through this that I found brainstrust. They are a registered charity that,
among other things, provide a closed group forum offering support and networking for fellow
sufferers. They can rant, look for support or swap information on their own personal
experiences and symptoms. I have personally found the forum very helpful.

I looked at the charity itself and found that it is a small charity run by people who are living
with a brain tumour or have family or friends that do, and they give a personal touch whereas
some of the larger well-known charities while worthwhile, can lack this quality.

Making contact

It was during a particularly bad time for me that I felt I couldn’t speak to any friends or family
for fear of worrying them, so I decided to contact brainstrust to tell somebody else what I
was going through. Within less than 24 hours I received a reply that touched my heart and I
suddenly realised there was someone else there for me, who didn’t know me but knew what
I was dealing with. It was a pivotal moment and it was from that point that this charity began
to help me through my journey.

As part of their support I received a parcel through the post, a ‘brain box’. This box included
books, literature, a pink brain stress ball, a tea-bag (always good to sit and have a cuppa)
and various other items, all packed with help, tips, information etc. Within this box was a
book written by Dr Peter Black and is about all you need to know about the various types of
brain tumours and treatments that are available. It was a great comfort to me to read this
and to my husband who read it which I was happy about as he has struggled to accept the
diagnosis from the off.

Working with my GP, who has been fantastic also, brainstrust subsequently offered to fund a
private consultation at the National Hospital for Neurology and Neurosurgery. I remain under
the NHS with the NHNN and I have never felt more comfortable with my care and I feel that
whichever way this journey takes me, I am under the best care available to me and it was
because of brainstrust that this became possible.

I feel passionately about this charity and the valuable work they do to help people who find
themselves with this devastating and life changing illness. brainstrust are involved in
research studies and attend medical conferences. They support petitions to the government
for more research funding. At present, this particular cancer remains the least funded by the
government, however it sadly is one of the biggest cancer killers in children. One of
brainstrust’s drivers is to raise awareness of these types of tumour and to aid earlier
diagnosis.

Getting involved

I currently sit on the steering committee of a trial for patients with ‘atypical’ meningiomas.
They trial the differences between ‘watch and wait’ against treating with radiotherapy, with a
children’s hospital in the UK. I was approached by brainstrust to ask if I would be happy to
help, which of course I was and will remain on the committee as a ‘patients point of view’
until the end of the trial. Without this type of trial and research the slow and sometimes late
diagnosis can be catastrophic for some types of brain cancer and can be the difference
between life saving surgery and the opportunity to continue a normal a life as medically
possible.

I have worked with the lovely people that run this charity in jointly organising previous
successful charity events, the latest being a Music Festival at our local pub, The Spa. My
own lovely children have run half marathons and Colourthon 5K walks on behalf of
brainstrust. I would therefore like to continue give something back to those that give their
time to help others, so I am planning a large fundraising event for brainstrust to enable them
to continue their fantastic work behind the scenes and help and support the many people out
there struggling with a diagnosis. To give them the funds to give the sort of support they’ve
given to me, to many others that find themselves in need of the kind of assistance that I’ve
been lucky enough to receive.

The brainstrust Football Tournament

Through the events that I organised or attended and through the wider network that I
encountered, I realised that there were several people in our village that are either living with
or have had a brain tumour and very sadly there have also been several that have lost their
battle with this dreadful disease. I realised also that, as I had spent many of these 7 years
living through a very uncertain time and that even amongst a fantastic network of close
friends old and new, there were times when I felt terribly lonely, but they have helped me so
much I feel I must continue to repay their kindness in some way

So, the brainstrust Football Trophy 2018 was born. The Under 11’s Football Tournament
played for the trophy at Hockley Community Centre on Saturday 16th June 2018. It was a fantastic family day, for parents and children alike and most of all, a fun day for all. The facilities were perfect with a huge field for the football and a lovely area around this for stalls and fun games There was a bar area too with a flat screen TV, a BBQ and a Hog Roast, and we also ran a raffle. I’m so delighted that the Mini Soccer Tournament was a success, and we managed to raise an incredible £6,300 for brainstrust.

The help & support I got from my friends & family for the tournament completely overwhelmed me, I’m still speechless now as to how they all just threw themselves into the day. Even those that weren’t actually helping on the day turned up  to support me as most of them don’t have children of that age for the football! I spent most of the day fighting back the tears as I couldn’t believe the support I had from them. I am very lucky!
The emotion of the day will stay with me for a very long time!

Sharon holding the brainstrust Football Trophy

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