In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Rich, from Brockworth, was diagnosed with a meningioma in March 2023, a fear he developed out of nowhere as a child which came to fruition. After managing pulsatile tinnitus since 2019, when he began to suffer visual disturbances three years later a scan confirmed a mass on his brain. He had surgery to remove the tumour in May, and ordered a bike as an incentive for his recovery. Having not cycled since he was a teen Rich, who is 40, is now preparing to take on a month-long cycling challenge to raise awareness of the disease.
Rich tells his story…
Having a brain tumour was something I feared when I was younger, around the age of 16. There was no reason for me to think this could happen to me. I hadn’t seen anyone go through the disease, I was never poorly, it’s just something that scared me.
The fairly new invention of the Internet fuelled this. I had all the information; whether accurate or not, at my fingertips.
Today, seeing the stats around the disease, and the fact that one in three people knows someone affected by the disease, I feel vindicated.
My anxiety came back to me in March 2023 when I was diagnosed with a meningioma after years of living with pulsatile tinnitus. It started in 2019 and sounded like a heartbeat in one ear. It was only noticeable when I was in a quiet room or after exercise, but I could live with it.
I went to the GP to get it checked, who referred me to an ear, nose and throat specialist (ENT). My case was seen as non-urgent which meant my appointment kept getting pushed back during the COVID-19 pandemic, and I was waiting for almost two years.
I continued with my daily life which included working as a gardener, still with the subtle thump in one ear.
Around Christmas 2022 I started experiencing blurred vision . Everything was subtle and happened over a period of time, I never thought it was a brain tumour.
This additional symptom was a red flag for my GP though, and after a scan I was told I had a 5x5cm mass on my brain.
I was in complete shock and the fear I had as a child came flooding back. I went into panic, dropping everything. The essence of my world broke down in front of me and immediately my driving licence was taken away as the mass on my brain meant I could suffer from seizures.
I was trying to process this nightmare. I went through all the emotions, including anger and thinking ‘why me’. As soon as I came to terms with the hand I had been dealt, I took control of the situation.
Surgery was my only option. I paid privately for a consultation with a neurosurgeon who then referred me to his clinic through the NHS pathway, probably speeding things up by a few weeks. I had a seven-hour operation on 4 May 2023.
Three days later I was home, the pulsing in my ear had gone and my vision improved. I will now be monitored with yearly scans.
Because I wasn’t allowed to drive, I thought about using a bike to get around. I’d not owned a bike since I was 14. I used this as an incentive to get me through my diagnosis and timed my brand-new bike to arrive on my return home after the operation. It felt like something to aim for, and a purpose to get back home and start my recovery.
In June I celebrated my 40th birthday and that same month I got on my bike, just weeks after having the tumour removed. I’m slowly building my fitness levels back up and I get out most days, it’s amazing how you accumulate the miles.
Throughout August, I am aiming to cycle 274 miles to raise money for Brain Tumour Research. I’m grateful to the healthcare staff who have been part of my journey. My family, wife, children and in laws have all been amazing in helping my recovery as well as my sister who was working as a nurse in Australia, who came over to the UK when I was diagnosed.
My sister-in-law has also been a source of inspiration as she is battling a rare heart cancer.
If it wasn’t for the people before me diagnosed with the disease, I feel like my story could be very different. Everybody’s case is unique. There is no one-size-fits all when it comes to treatment which is why I want to join a cause whose mission is to find a cure and improve patient outcomes.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.