In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Neil was only 25 when he was diagnosed with a brain tumour the size of a plum. After painful brain surgery, he was told his tumour was a high-grade medulloblastoma. Dealing with the financial, physical and psychological impact of his diagnosis, he is trying to rebuild his life.
“My plan now is to take care of myself. I eat healthily, go to the gym, do Pilates. My last scan in October 2018 was all clear so I’m full of optimism and hope. I’m also extremely lucky because I have my parents, my two younger brothers and my girlfriend who are all really caring and supportive. I want to build enough strength to work full-time again. I believe I’ve found my niche and my dream is to continue working in mental health and support others. I have got used to the fact that I’ll never be who I was before and I’m OK with that now. My diagnosis has helped me to find my purpose and provided me with a clear path.“
Neil tells his story…
I was a busy bar manager in London, working day and night and loving my job. I started experiencing symptoms in October 2016. I remember the exact time it began: it was a day before my 25th birthday at around 7pm. It felt like I had water in my ear and over the next three weeks it got worse. I felt dizzy all the time and had vertigo fits where I would be standing, talking to someone and the whole room would start spinning. My right arm would stop working and my coordination got really bad.
The symptoms fluctuated and some days I would feel better and some days worse. I went to see a GP who suspected that I had an ear infection. I was given medication but my symptoms didn’t improve.
One night, I went out and even though I barely drank and felt sober in my head, I looked completely wasted. I couldn’t stand on my legs straight and my speech was really slurred. The bartender refused to serve me.
The next day, I FaceTimed my mum, a GP, who thought there was definitely something wrong. She feared I had MS and my parents insisted that I should come home to Inverness to see them.
I arrived in Scotland and went to a hospital the next day, 22 November, 2016. They did loads and loads of tests, including an MRI and found a brain tumour the size of a plum in my cerebellum. That same evening I was driven 100 miles to Aberdeen as Inverness unfortunately doesn’t have a neurosurgical department. Because it was in Aberdeen, my parents had to stop working in order to be with me.
The tumour was so big that they were worried it would block the spinal fluid going to my brain and they kept me in hospital for a number of days. I was operated on 1 December and the surgery lasted about five hours. When the drugs faded, I felt the worst pain you can imagine. The sort of pain that if somebody gave me a button to kill myself, I would have pressed it straight away. It was literally like someone drilling into my head.
After about four days, it started to get a bit better. I couldn’t move after surgery but that also improved after a few days and I could walk a little bit. They released me after seven days. I desperately wanted to go home.
I was left with this big scar at the back of my head. It makes me a bit self-conscious and I often wonder if people who see it think I’ve been in a fight.
They weren’t sure if my tumour was low-grade or high-grade. Sixteen days after the operation, they called and told me that my tumour was a cancerous medulloblastoma and I would have to start radiotherapy. I was really angry. I wanted everything to bounce back to normal but my life was put on hold. I don’t have many friends in Scotland anymore so the prospect of staying with my parents during the treatment made me even more upset.
We had to move to Edinburgh for the next three months as I underwent radiotherapy. The move put even more strain on my family.
Since finishing treatment, I have been slowly improving but I’ve noticed that some days I’m feeling better and full of energy, whilst other days I’m just exhausted and depressed. The whole ordeal gave me serious mental health issue mainly because I didn’t have a purpose in life.
After I recovered, I was determined to move back to London. I really wanted to return to working in bars but realised I wouldn’t be able to. Any physically demanding job is just too much for me. While I was looking for work, I really struggled financially so I applied for Universal Credit to help me with my rent and income support.
After their assessment, I was only given £780 a month which left me with £30 after I paid my rent. It’s because this was based on me living in Inverness, where I made the original claim, not my actual place of residence in London. All that just added to my anxiety and I felt completely let down.
I spent a lot of time dealing with the Job Centre and there was a complete lack of understanding. I kept explaining to them that I have cancer and couldn’t work. I felt like I was being penalised for having this disease. It was a horrible time.
Things started to turn around when I went to a mental health charity Hillside Clubhouse, which not only helped me with my benefits but also offered me a job. I started working there as a support worker. Helping people in difficult situations really gave me purpose and direction in life.
My money situation still isn’t easy and I really wish people would understand how difficult it is to live with a brain tumour, especially after surgery and treatment. When I talk to other cancer patients, they often have a much quicker recovery than those with a brain tumour. After my treatment I used to think: ‘Why is it taking me so long to get back to normal?’ Back then, I wasn’t even aware of the long-lasting consequences like impaired memory, speech, movement, constant fatigue or mental health problems such as depression and anxiety.
What really helped me out was counselling. I also joined young cancer patients’ support groups. We have regular pub meet-ups. You would think that we must be a pretty desperate bunch but it’s actually the complete opposite. We share a dark sense of humour and laugh all the time. We make jokes about death and tombstones… I know some might find this tasteless but it helps us to cope and to not take our situation too seriously.
My plan now is to take care of myself. I eat healthily, go to the gym, do Pilates. My last scan in October 2018 was all clear so I’m full of optimism and hope. I’m also extremely lucky because I have my parents, my two younger brothers and my girlfriend who are all really caring and supportive. I want to build enough strength to work full-time again. I believe I’ve found my niche and my dream is to continue working in mental health and support others. I have got used to the fact that I’ll never be who I was before and I’m OK with that now. My diagnosis has helped me to find my purpose and provided me with a clear path.
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 inspired by Neil’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.