In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
After suffering seizures, former soldier Dan Mason, 33, was diagnosed with a pleomorphic xanthoastrocytoma – a very rare and incurable type of brain tumour. He was forced to quit the job he loved and lost his driving licence, yet still faced his diagnosis with positivity. A tattoo across his chest, which translates to ‘think positive, be strong’, reminds Dan to live in the moment, despite the pressure his illness places on him, his wife Roz and his children Caleb, 10, and Daisy, two.
“Emotionally, things were tough. I remember standing outside the hospital, in my army uniform, crying. My friends and family members didn’t know how to react or how to comfort me and that was really hard to deal with.”
Here is Dan’s story…
It was in 2004 that I began experiencing strange sensations, such as a tingling in my left arm and a shortness of breath, which I passed off as too much work or being overly tired. I was in the army, as a port operator and physical training instructor, and I was looking forward to making my career in the armed forces.
I did my best to shrug off the symptoms but, by 2007, they were harder to ignore. I started having daily seizures and, although I never lost consciousness, it was really scary and horrible to go through. I would always have an aura before each episode, where I felt a weird sensation in my stomach and teeth, so would do the best I could to prepare myself. I remember running with several of the soldiers that I was in charge of and having to find somewhere comfortable before the seizure began. It happened lots of times whilst out and about with the troops. Hardy anybody knew what was happening.
My GP referred me for tests to determine the cause. Nothing could have prepared me for what happened next: an MRI scan revealed I had a brain tumour. It turned out my seizures were acquired epilepsy due to the location of the tumour, and I was prescribed medication to try to control the symptoms. I was advised to “watch and wait” and not to undergo any treatment at the time.
It wasn’t until July 2008 that things took a turn for the worst. I was swimming when I had a brain haemorrhage. It felt like I had been hit on the head with a cricket bat and I was rushed to Southampton General Hospital.
A biopsy the following January showed my tumour was a grade 2 pleomorphic xanthoastrocytoma, a very rare type of tumour, which was inoperable. I was advised to have radiotherapy so later that year, in July, I started several weeks of treatment.
I tried to keep my life as normal as possible throughout. Even by the fourth week of the treatment, I was still working in the army operations department and continued to go to the gym. Keeping fit and working hard gave me a lot of purpose and distracted me from my inevitable worries.
Things hit home when my son Caleb, who was one, touched my hair and, as he did, it fell out. That’s when I knew I needed to rest and to take time off from work. I took around four weeks off sick as in that time I felt extremely tired and drained – I didn’t want to move from the sofa. On top of the radiotherapy, the doctors were still trying to find the most effective combinations of drugs for my epilepsy and this also took its toll on me physically.
Emotionally, things were tough. I remember standing outside the hospital, in my army uniform, crying. My friends and family members didn’t know how to react or how to comfort me and that was really hard to deal with. I found that being proactive helped keep me going and helped me to not overthink things.
After treatment, I had scans every six months. I was still trying to keep things as normal as possible so continued to work. While out on duty, I would have to plan where the nearest hospitals were, in case I suffered complications, but my colleagues and bosses were understanding.
When my regular seizures got too much for me, in October 2014, I finally had to give up the job I loved. It was really hard for me but I was very fortunate to move onto a role as an employment consultant for a building company the same year. My job started in Southampton, then in July 2015 we were moved to Plymouth as my wife, who works in the security branch of the Army, had been relocated. It gave us the fresh start we needed.
When I was first diagnosed, I had to give up my driving licence and this was by far the hardest part for me. Although I enjoy my job, not being able to drive means I have to be home-based. I am now faced with the task of trying to convince my doctors I’m fit to drive. It’s very frustrating as there have been times when I’ve got my licence back, only to have it taken away again, due to complications of my illness and the varying advice of doctors I’ve seen around the country. Even though I have epilepsy, changes in the law in 2012 stated that if I remain conscious before, during and after the seizure I’m allowed to drive. I’m frustrated that even now, in 2018, I’m still fighting to drive.
The fact I cannot drive also has a big impact on my wife, who often feels hopeless and stressed that she has to take on so much. My illness and having a routine scan around June or July also affects her; she finds it especially difficult and panics around the time of my scans, and it causes a lot of anxiety for both of us.
Caleb, who is now 10 and learning a lot about the world, is very inquisitive about my tumour. He used to simply refer to the tumour as the ‘lump in Daddy’s head’. He often asked me questions and wanted to know how I was. My daughter Daisy, who is only two, also brings me a lot of joy.
I first heard about the Brain Tumour Research charity when I attended a presentation in Southampton, and I was shocked to find out that historically just 1% of the national spend on cancer research has been allocated to this devastating disease. I found it hard being one of the youngest patients in the room and this took me back to the dark times of my radiotherapy, when I was in a ward full of older people. It reminded me how indiscriminate brain tumours are – here I was, a young and healthy man, afflicted by a debilitating disease.
It saddens me that, although I love to keep fit, I can no longer train, as running brings on my seizures. Despite so many setbacks, my motto is to think positive and be strong. I have ‘carpe diem’ tattooed across my chest which reminds me to seize each and every day. I think that my mental attitude has a massive impact on my health in general, so I try and focus on the positives. Having documented my symptoms in a diary, my current prescription for my epilepsy is working well and I’m pleased that there’s been a reduction in my seizures.
In September 2018, I attended a lab tour at Brain Tumour Research Centre of Excellence at the University of Plymouth. It was fantastic and insightful, and it has motivated me to raise £2,740, which represents the cost of a day’s research, so I can place a tile on the Wall of Hope.
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 Dan’s story, you may like to make a donation via https://www.justgiving.com/fundraising/edwardandrewmorrison 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.