Video of my story below: 

https://www.youtube.com/watch?v=MjNKBbqQGeU

For me, to go from being paralysed down one side and unable to walk to running the London Marathon this year will be a great achievement. And to do it with my brother, who has been a rock for the entire family throughout everything will be amazing. 

My name is Shay Emerton and in April 2021 aged 24, I was diagnosed with a Brain Tumour known as an Astrocytoma grade 2. 

Pre Diagnosis:

My life was that of a relatively normal 24 year old. I had graduated University, set up my own business, looking forward to moving out of home and was really looking forward to the future. However, on the 10^th of April, during a Saturday football game, my life changed in a split second. I took a knock to the head and instantly knew there was something wrong. I tried to walk but fell to the ground. The first thing I worried about was having a brain bleed and I called out, saying ‘Dad, I’m in trouble’. However, before my Dad could reach me I lost my sight. I fell unconscious and had what I learnt after was a Grand Mal Seizure. My body went into shock and I went into respiratory arrest. Luckily, the opposition had an anaesthetist playing for them – he’d never played before and was just standing in for a friend – and he gave me CPR on the pitch and got me breathing again. 

I woke up in the back of the ambulance and was rushed to hospital. A doctor took a CT scan, which obviously showed something up because he said he wanted ‘to check on something’ by doing an MRI. This was at a point where, because of COVID-19, hospitals still weren’t allowing visitors in so when I saw my Mum and Dad I instantly knew something was wrong. That's where my life changed forever as the doctor said ‘I’m sorry to tell you you’ve got a tumour on your brain’.

Diagnosis:

My scans were sent for review to the National Hospital for Neurology and Neurosurgery (NHNN) in Queen Square. Eventually I was discharged and told that I needed to go to Queen’s to meet a neurologist. I went to Queen Square the following week and met with consultant neurosurgeon. I was ready to turn up and have him put his arm around me and tell me he’d whip this thing out my head so I could get on with my life, but he was so professional and told me that he needed to do lots of his own tests before making any projections or even talking about surgery. 

When I met with him at the next appointment, he told me my tumour was located next to my primary motor cortex and was operable but he did tell me there was a high risk of me being left disabled or with permanent deficiencies as a result of the operation. He told me he thought I had a low-grade glioma and the plan would be to carry out a maximal safe resection without impairing my quality of life. Despite the mammoth operation ahead of me, I was told the likelihood of cure was slim. I’d always known I wanted to have children in my future and, although he couldn’t tell me what to do, it was clear that having the surgery was my best chance at being able to have a family one day so I decided to go ahead with it.

I was admitted to the NHNN on 11th July because the neurosurgeon wanted to start operating early the next day. It sounds ridiculous now but that night was probably my lowest point; the Euros final was on and I knew all my friends were out having a great time and I was stuck in a hospital getting ready to have brain surgery, thinking: ‘this isn’t what a 24-year-old should be doing’. My mum and dad couldn’t come in so I was left completely alone with my thoughts. I can’t explain the level of fear I felt that night as I contemplated a surgery I might not wake up from or which might leave me paralysed.

He reiterated that I would be woken up during surgery and asked to move various body parts on my right-hand side to make sure he was taking out my tumour and not healthy brain cells, thereby reducing the chance of being left with a permanent deficiency. He warned me that as he would be working in my supplementary motor cortex, I would likely suffer from supplementary motor area (SMA) syndrome which causes temporary paralysis as your brain shuts down parts to focus on other things as it figures out what’s going on. 

Surgery:

The Surgery lasted 12 hours, 6 of which I was awake for. As predicted, after the surgery, I was left completely (and luckily temporarily) paralysed down my entire right hand side. After the operation ended and I woke up un ICU, I had lost my speech as a result of the SMA and it took a lot of effort to communicate but I told the neurosurgeon it was my mum’s birthday and asked if he could call her. I remember hearing my mum crying through the phone as he told her the operation had gone well. I said: ‘happy birthday Mum, I’ve done it.'

The neurosurgeon came to see me every day for the next week and reassured me but it was disconcerting not being able to move anything but my neck. I was told to give it time as my brain needed to recover from having a large hole made in it and was assured my movement would come back. Over the next few days, intense physio and speech therapy was required in hospital. My sixth night after surgery, I woke up and got out of bed without even thinking about it, but, even though I was standing, I realised I couldn’t walk and had to call a nurse. A week after my operation, the physios came to see me and I told them that I wanted to walk that day. They were only supposed to be with me for 30 minutes but after two gruelling hours with me I was walking. Once I could walk, I felt human again and felt like I was finally on my road to recovery.

Patients are at greater risk of having a stroke during the first 10 days post-surgery, but after that I was free. I was offered a wheelchair but I turned it down because I wanted to walk out of the hospital, but by the time I got to the car I more or less fell into it. Which is when the enormity of my situation hit me. I’d gone through a massive operation, learned to walk and talk again and still wasn’t cured. I knew my journey wasn’t complete and I would likely have to go through it all again someday, very likely within the next 5 years. I knew my tumour wasn’t aggressive, which is why I didn’t have to undergo chemotherapy or radiotherapy at this time, but I know this is what is expected when it does reoccur or become more aggressive.

Recovery:

To add to the surgery during my recovery period I developed an infection and was re-admitted to hospital. I wasn’t allowed to eat for two days, in case the antibiotics didn’t work and I needed to have surgery, but luckily we caught it early. The hospital was excellent during this time and allowed me to have a peripherally inserted central catheter (PICC line) fitted and for 15 days I travelled to London every morning to get my antibiotics administered. 

It was in September, after I’d finished the IV antibiotics and was able to start seeing friends again, that I felt like I was able to start getting my life back. I finally returned to the gym in December. I had tried to go back earlier but just couldn’t walk through the door. I didn’t feel like a normal 24-year-old and was grieving my old 'normal' life. It’s a weird thing to feel like you have no control over your life. However, after speaking with a long term brain tumour survivor and with a big help from my brother, Connor I managed to return to exercise. It was the first time I had been happy in months, not just because of the endorphins it produced but because I felt in control again. It also motivated me to sign up to the 2022 London Marathon. For me, to go from being paralysed down one side and unable to walk to running the London Marathon this year will be a great achievement. And to do it with my brother, who has been a rock for the entire family throughout everything will be amazing. 

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.

I am learning to accept what’s happened in the last eight months and not let it ruin tomorrow. I feel lucky to be given a second chance. I appreciate the little things in life so much more. I am so grateful to all the staff at the NHNN not only my surgery team. I can't thank my friends and especially my family enough, who have been there every step of the way. When I was first diagnosed, I was looking for hope and now I want to be able to give that to other people with a brain tumour diagnosis who have had their lives turned upside down. There is happiness to be found in my new life and a lot of memories to make. To read my full story please see the link below:

https://www.braintumourresearch.org/stories/in-hope/in-hope-stories/shay-emerton