Rehab support worker, Scott from Eastbourne was diagnosed with a meningioma in March 2020. It followed 18 months of symptoms including extreme headrushes and numbness throughout his body. The 42-year-old had an operation to remove his brain tumour as lockdown hit the UK, after which he contracted long COVID. Although this tumour was removed successfully, Scott is living with upper body weakness and severe neck and back pain. He started walking more to aid his recovery and is sharing his story to offer hope to others who maybe going through their own diagnosis.
Scott tells his story…
My symptoms started in 2018. I had episodes of almost blacking out, which at the time, didn’t feel serious. It could happen when I was standing and felt like a major headrush which once caused me to fall to the ground. I thought of what could have brought these spells on; maybe I was too hot or hadn’t had enough water but as far as I could tell they were random.
Soon after, I started to experience numbness in both my arms and a stabbing pain in my stomach. I was checked over at Eastbourne Hospital where doctors found nothing of concern. I left with stretching exercises for a suspected trapped nerve.
At the time, I was working as a support worker, a job often carried out with another colleague which was just as well as I struggled to tie the shoelaces of my clients and fasten buttons as the numbness gradually worsened.
“I still had my strength but had lost my fine motor skills.”
Doctors were stumped as to what was causing my symptoms and requested a referral for an MRI scan. I had my first scan on 15th March 2020 and a week later, I was in the MRI scanner once again with contrast dye. I knew they must have seen something dodgy on the first image.
I was told straight after the second scan, that they had found a tumour on my brain called a meningioma. It appeared to be low-grade but was growing in a way that had pushed the top part of my spinal cord as flat as a piece of paper. They were surprised I was as mobile as I was.
As lockdown in the UK began on 23rd March, I had the operation to remove my brain tumour and they had to remove my C1 and C2 vertebrae to access the tumour, and I still live without these today.
I woke up after the procedure in excruciating pain; I’d never felt anything like it. After three days of being bed-bound, I stood up and had regained 80% sensation throughout my body. I was sent home to recover, however, I caught COVID which floored me for three-and-a-half weeks.
I was unlucky to catch it four times including long COVID.
“I went into a really dark place and life felt heavy. I developed agoraphobia and was scared to leave the house.”
My dad helped me through, and he bought an electric scooter which was a game changer. I couldn’t walk more than five minutes, or I’d get heart palpitations and was still working towards my mobility and stamina, the scooter got me out of the house.
As I worked on my fitness and confidence, I could walk longer and further and decided to go on a lone hike. My heart felt full again and it helped me get out of a dark place and for the first time in a long time, I could step away from my thoughts and see a future.
In February 2023, on Facebook, I saw advertised the charity’s 10,000 Steps a Day in February Challenge. I thought it was a great way to incorporate what I had found enjoyment in doing whilst helping a cause with an important mission.
I encouraged different people to join me on a walk each day and managed all 28 days in the company of someone walking beside me. I really struggled at times, but it was friends and people walking with me that helped me complete the challenge.
This inspired me to set up a Facebook group called Eastbourne Free Walkers because I got a little bored of walking on my own.
"The challenge showed me, I don’t need to be alone, so wanted to share the joy it brought me, with others."
In April 2025 I’m planning to take part in my own week-long hiking challenge from Durdle Door in Dorset to Tower Bridge Door in London. The idea is to visit as many doors as possible that the UK has to offer along the way including historical ruins, abbeys and castles. It should take around six days, and I’ll cover approximately 130 miles staying in hotels, B&Bs, hostels or anywhere that will put us up for the night along the way. It’s all in aid of this great charity, Brain Tumour Research.
For a year now, I have hosted my own show on Eastbourne Hospital Radio called Scotty T’s Wednesday Uplifter. It’s a mix of chatting, quizzes, and funny news stories littered amongst feel good music. Also becoming part of the fundraising committee, as the radio station is also a charity, full of amazing volunteers.
My last scan in September 2024 was clear. I have pain in my fingers, sometimes my shoulder and back goes. I have pain in my neck which nothing seems to alleviate. I have seen many specialists but to no avail, I still suffer with many pains. Despite this, I am the happiest person and live without the brain tumour and I feel lucky to be able to say that. Not everyone’s diagnosis will be the same.
I knew very little about the disease before I was diagnosed with a brain tumour. When I saw that Brain Tumour Research was investing money into research the disease, I felt it was something I really wanted to be part of.
My diagnosis impacted my physical and mental health, and I hope that by sharing my story, I can help to raise awareness of brain tumours. I’m working towards becoming a life coach to help others who have been through difficult times and show there can be light when times appear dark.
Scott Temple
October 2024
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 just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Scott’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure