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In Hope

Just 1% of the national research spend has been allocated to this devastating disease

The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.

Matthew Stride

Matthew Stride, 27, popped the question in October 2016 during the holiday of a lifetime to Dubai. His girlfriend Sarah, described it as the “perfect proposal” and said yes. Matthew’s parents were in the Middle East along with his sister and brother and their partners to join the celebrations. A year earlier Matthew was diagnosed with a cancerous brain tumour and told he could have as little as five years to live. Now, he and Sarah are determined to make every moment count.

“Although we had only been together a few months when I was diagnosed, Sarah has always stuck by me and been the most amazing support through everything. She is the one I want to spend the rest of my life with – however long the rest of my life might be. When I dared voice a doubt about whether it was right for me to ask her to commit to marrying me when I have limited time she told me not to be stupid. I think we would have got engaged in due course anyway but living with a brain tumour helped to speed up the process. We hope to marry in 2018 and Sarah is already planning the day.”

The first I knew anything was wrong was when I was playing a lot of five-a-side football. It was just a kick about with friends but I started to notice the odd occasion where things were happening around me and I wasn’t able to react. The same sensation also happened at the gym and when I asked my GP about it he suggested it could be something to do with my heart.

I had tests but everything came back clear so I was referred to a neurologist at Birmingham City Hospital. There were more tests and the vacant episodes I had been experiencing were put down to epilepsy. That was in May 2014.

It wasn’t until autumn 2015 that I finally had an MRI scan. The next working day my consultant telephoned me with the results. I was at work sitting at my desk in the middle of an ordinary afternoon when I received the news that brought my world crashing down; I had a brain tumour.

I was shocked, frightened and confused as I tried very hard to imagine the best case scenario, thinking that the “lesion” was something small, it wouldn’t be cancer and that, somehow, things weren’t serious and it would just go away. In the event though the scan showed a white mass which had grown to 5cm x 3cm in the right frontal lobe of my brain. It was so hard to believe how dire the situation was – apart from the absence seizures I had experienced, I felt fit and well and to look at, no-one would know there was anything wrong with me. 

The medical team were very good and talked me through things. I left the hospital in the knowledge that I was facing surgery, followed by radiotherapy treatment. I opted to wait until after Christmas in the hope that we could at least try to enjoy the festivities. 

By that time my girlfriend Sarah and I had only been together for around seven months but we both knew we had something special. We went away for New Year and tried to avoid talking about what was uppermost in our minds. 

The seven-hour operation took place at Queen Elizabeth Hospital, Birmingham, on 6th January. In order to limit the risk of damage to healthy areas of my brain, I was awake for part of the craniotomy procedure. The idea seemed crazy, like something from a sci-fi movie, but I was reassured this was the best course of action in order to take as much of the diseased area away with minimal damage to healthy tissue.

The tumour had grown to the size of a golf ball and, carefully, it was cut away and removed. About an hour into the op I was brought round. It was surreal and exciting with a real buzz in the atmosphere and everyone around me in high spirits. It is still extraordinary to recall I was listening to One Direction as, momentarily, I would lose all sensation and suffer temporary paralysis to my arm as the surgeons went too close to healthy areas.

With the help of my parents and support from the company I worked for, I recovered well post-op and as I got back on my feet I felt fine, physically and mentally. We had to wait for the results of a biopsy to see if any further treatment was needed and, although I had always assumed things would be fine, I found I couldn’t speak to the doctor when the call came so my mum was the first to hear the news.

Far from being the benign mass I was expecting, my tumour was a grade three anaplastic astrocytoma. We were completely shocked and then horrified as the implications of what it meant to have a malignant tumour began to sink in. I was in my twenties, with a beautiful girlfriend and a job that I loved but I had an incurable brain tumour. Treatment was available but, even then, my prognosis was just five to six years.

I was told the treatment would hit the tumour hard but it would be gruelling. I was likely to suffer from sickness, hair loss, debilitating fatigue and could be left infertile. Just months into our relationship, Sarah and I were being forced to have conversations about my mortality and whether we should make the decision to have some of my sperm frozen should we want to try for a baby in the future. It felt as if my life was being accelerated, I was asking Sarah to take on so much and yet she did without question.

How naïve we had been to assume things would go back to normal and we would be able to get on with our lives after the surgery. Things were so far from that and seemed to be getting worse all the time. I felt it was important to know my prognosis but, to be told you have six years at most is completely devastating. Things were very bleak and not just for me but for everyone around me. When we were told the news, it was the only time I had ever seen my dad cry. It was horrendous.

The situation isn’t good but I am young, fit and otherwise healthy. With so much hanging over our heads we are doing our best to remain positive although it is shocking to learn that brain tumours 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. We have to believe that advances in treatment will happen and that things will change for the better.

My diagnosis means I am no longer able to drive and I have found it hard to deal with that. The loss of independence is huge – I should be able to drive my girlfriend out to dinner but I can’t. I should be able to drive into work but I have to cycle and then catch a train. I also relied on public transport as I went through radiotherapy Monday to Friday for six weeks. I took chemotherapy tablets at the same time and watched as my hair started to drop and I put on weight as a result of the medication, over-eating and the fact that I could no longer play football or exercise. My treatment finished at the end of March and I had a break before a six-cycle course of another chemo drug aimed at preventing the tumour from growing back.

In October, a year after my diagnosis, I flew out to Dubai with Sarah, my mum and dad, my sister and her husband and my brother and his girlfriend. On the second evening, Sarah and I walked along a red carpet onto the beach. I plucked up the courage to go down on one knee, present her with a white gold and diamond ring, and ask her to marry me. I had been very nervous and was delighted when she said yes. Sarah has always stuck by me and been the most amazing support through everything. She is the one I want to spend the rest of my life with – however long the rest of my life might be.

When I dared voice a doubt about whether it was right for me to ask her to commit to marrying me when I have limited time she told me not to be stupid. I think we would have got engaged in due course anyway but living with a brain tumour helped to speed up the process. We hope to marry in 2018 and Sarah is already planning the day. Sarah and I are extremely grateful for the support we have had from friends many of whom cheered us both on when we completed the Birmingham Half Marathon in 2016 to raise funds for Brain Tumour Research. And just a week after we returned from Dubai, our Glamour and Goodness black tie charity ball raised a staggering £36,000, which was split equally between Brain Tumour Research and another charity. The next challenge I am focusing on is the 2017 London Marathon.
 
Matthew Stride
November 2016
Matthew Stride In Hope resized

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