In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Colin Newton was diagnosed with an inoperable grade 2 astrocytoma in June 2018 after suffering with severe weakness in his right leg. The 41-year-old warehouse operative, from Burgess Hill, West Sussex, had two rounds of chemotherapy and six weeks of radiotherapy after which he suffered a seizure. He now takes anti-seizure medication and is being monitored with regular scans.
Colin tells his story…
In 2018, as well as working as a flooring surveyor and spending much of my days driving to and from pre-booked appointments, I was a dance instructor; but I started experiencing weakness in my right leg and eventually had to give up my classes. I went to the doctor and was put on a course of physical therapy, which worked for a while but then the weakness got increasingly worse.
“Before long I couldn’t jog or run and, in the end, I had to use a walking stick to get about.”
As the nerves at the bottom of my spine were really tense, it was thought I had a problem with my central nervous system. When I returned to the doctor, he suggested I saw a specialist at the Princess Royal Hospital (PRH) in Haywards Heath, West Sussex, who ordered a full body MRI scan to see what was going on. It was that scan in June 2018 that led to the discovery of a lesion in the left hemisphere of my brain.
“I was told the lesion was located on my motor cortex, which controls things like movement and accounted for the problem with my leg.”
I went home and phoned my family to tell them the situation I was in. Sharing news of my brain tumour with my parents and my then fiancée Fiona, whom I have since married, was awful. That night will forever be tattooed on my mind. I also arranged to have a meeting with my store manager, which my stepdad joined me for. I told him I was going to have to go on extended sick leave because I had to forfeit my licence and had no idea how long it would be before I was fit enough to drive again.
I was admitted to the Royal Sussex County Hospital, in Brighton, for a biopsy two days later. The results showed I had a grade 2 astrocytoma. Luckily, it was low grade but I was put on a course of chemo to prevent it from developing into cancer. I was due to have six rounds but I had to stop after two because my platelet count was getting dangerously low. Instead, I was moved onto a course of radiotherapy, for which I had to go to Preston Park Radiotherapy Unit, in Brighton, Monday to Friday for six weeks, each day at different times.
“I was warned about hair loss but I wasn’t prepared for the extremely itchy scalp I got.”
I tried all sorts of shampoos and it did calm down, but during my second week of radiotherapy my hair started to fall out. I refused to wear a wig and quickly made the decision to shave it all off. I’ve kept it like that since because the line where the radiation went through my hair has resulted in really fine follicles and, despite everything else growing as normal, that two-inch line will never allow hair to grow back properly. Fortunately, my neighbour was a hairdresser so I asked her to do it. I also allowed friends to have a go using the clippers in return for making a £5 donation to Brain Tumour Research.
The day after I finished radiotherapy, Fiona and I went up to Crawley for the day. We at Three Bridges train station on our way home when I collapsed on the platform and suffered a seizure. The only thing I remember is Fiona shouting my name. I was rushed to East Surrey Hospital, in Redhill. Despite apparently being fully compos mentis and able to talk to friends and family, the first thing I remember is being wheeled out of the hospital.
“My oncology team put the seizure down to me having just finished radiotherapy, but it was all very traumatic and I’d like to understand more about why it happened.”
I was put on anti-seizure medication, which I will have to remain on for life. I’ve since learned of four people living in the same street as me who have also been affected by brain tumours. I’m shocked by how common they are and how little we know about them.
In total, I had 15 months off work. My employer was fantastic throughout and kept my job open. When I felt ready to go back, I got in touch with head office and was put on a phased return. I wasn’t able to be left on my own because I was prone to seizures and had to rely on lifts and buses until I got my driving licence back, which took two years. I left in November 2022, after eight years, because Fiona and I wanted jobs that would allow us to spend more time together and that wasn’t conducive to me working weekends. I now work as a warehouse operative.
My leg is much better and although I do still get some weakness, I no longer need a walking stick. My balance isn’t what it was so jogging and running are out of the question but I can walk quickly, which I found out by doing the 10,000 Steps a Day in February challenge last year. We’re big supporters of Brain Tumour Research having also taken part in Wear A Hat Day, and Wear Grey for a Day in support of its member charity brainstrust. My next fundraiser will be a 10 mile hike along the Brighton sea front in June to mark the fifth anniversary of my diagnosis and my third wedding anniversary.
“It will be one of the hardest things I’ve ever done because long distances are really challenging for me.”
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.
Brain Tumour Research is determined to change this.
If you have been touched by Colin’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