My Story

Many of you may know parts of my story, so let me try and fill in the blanks.

In my last year of school, I lay there in bed one night perfectly asleep. In a moments notice I wake, a feeling comes over me and I have no control of my right arm- it’s starting to raise without being told to. In my haze of waking up I realise it is completely tense, with the fear of the unknown and the pain starting to ramp up i fall unconscious, through period i know i’m moving but do not know how i know this. Throughout the course of a month, this happens more frequently, sometimes i shook so violently that i would be left with friction burns, sometimes i would fall off my bed- which give my mum sleepless nights. The time comes to visit the doctor. The diagnosis: you’re worried about uni, you’re having night terrors…i came away feeling that wasnt the case. Repeated visits resulted in repeated diagnosis.

Then, whilst on holiday up in Austria we unfortunately got snowed in and could not leave the country. With two days to kill, we visited Red Bull Land and saw their awesome machines. On the last day we decided to visit a coffee shop, this was where my life would be completely changed forever… it was just a normal coffee break, then BANG! Out of the blue, my bastard of a right hand begins to rise and become rigid, i know i have maybe 2 seconds to say something and in my panic all i can muster is epilepsy, then i fall of the bench and descend into darkness. When i awoke, i was so embarrassed and sit there and cry in my mother’s arms like a baby and i dont think i really stopped till arrived home.

A couple of days later, we go to see a different GP, he says it’s almost certainly epilepsy and that i will be having a brain scan soon. I have the MRI scan in Derriford and they tell me what’s going to happen and they need to inject me with dye to see what’s going on. If you have never seen one of these scanners, imagine a big doughnut with a bed in the middle. A week later i get told that i have demalination, bracket term for something’s in your brain but we have no clue what. This then turns in to lesions, another bracket term for well its not an infection it’s a piece of flesh.

And this is where the fun begins… i have every test under the sun ending in a lumbar puncture, which if you know what it is then you know it isnt nice. It is then announced that the only way to know for sure is to have a biopsy taken. So i was like okay, it’ll be fine only a 1% of going as told by my surgeon. As i wait 7 o’clock in the morning, the surgeon comes in and takes my mother and i into a small room and says, its very close to some important parts, so as normal person i bailed. After speaking with my new and improved GP, i am told that the biopsy is a necessary evil. 

Remember that 1%, because that will be key. I go to surgery and it surprisingly familiar, drowsy pain. When i wake, i am being wheeled into an MRI machine, i mumbled out that i would move if i could. I was in there for awhile, but was high as a kite… Drifting in and out of consciousness, i hear something which shook me to my core, He Has A Massive Brain Bleed. That was the first time i ever went to sleep thinking: Shit i might not wake up, ya know. 

Spoiler, i woke up. Just in time to be wheeled around a corner to see my whole family sat there and exclaim ‘what’s up wankers?’. Im not sure how that went down with the crowd as i was wheeled into ICU. Let me tell you folks, that was the longest 24hrs of my life. However, to keep myself going, my nurse Catherine was nicknamed Catheter, mum was not impressed when she found out. I did learn one major lesson in ICU though. There was a man next to me, one bed across and he would not Shut The F**k up. I heard all sorts of nurses speaking to him and felt sorry for him until i realised how it happened, then i just thought what a D**k. He had shatter his hip and pelvis, so badly that the doctors had to wait 3 days for it to repair a bit before they could operate. Then the nurse said it was because he wasn’t wearing a seatbelt… People Stop Texting And Wear A Seatbelt In The Fucking Car!

I was then moved to a ward, Fal ward. It was an exciting week in Fal ward, i met Rob -a guy that claimed he was a farmer and regularly tried to leave, even threatening to pull out his catheter, but backed down when a nurse said that wasnt a great idea. I met by a surgeon one morning who said that i had a glioma, actually 3, and not to worry about it. I was the only one in that ward who could hold a conversation and had to tell a nurse which medication to give me, 2 days after major brain surgery! 

Whilst on the ward i had learned that below the neck I could not move the right side of my body, called hemiplegia. This is where my mental stability fell off a cliff. The rug had been ripped from beneath my feet, but there still worse to come. I cried all morning knowing in all likelihood i had just lost so many things that i hold dear- i felt worthless and damaged and that’s how i thought others would see me. 3 days out of theatre i had 3 poor women trying to get me to walk, one on my ankle, one on my knee and one on my ass! I was rehab-ed for about a week before the decision was made to send me to Mount Gould.

At this smaller, more specialised facility there was a lot more going on and many people could talk, eat and even walk. Hope! There was a way back. I spent a lot of time on netflix, complaining and unfortunately be really nasty to family and friends, mainly my mum. One of my great regrets is how i treated my mum during that time, i was not a nice person and really struggled mentally to deal that change which resulted in my poor treatment of my mum. I was speanding 2 hours a day on rehab-ing my arm and leg. I must also mention Roger! Roger was in this facility with me and i got out of him how he became ill. Now Roger had an argument with his wife in the car, he had the decided that it would be a good idea to step out of the car whilst it was still moving, about 5 mph, not knowing his leg was tangled in the seatbelt. His wife accidentally dragged him around an Aldi carpark, needless to say he regretted that decision, its always cars!!

After 6-8 weeks i was free from hospital and left to fend for myself. To be fair im still quite hazey on what happened diring this period, so I’ll skip to November. 

We were called into the hospital, i think my mum and i both knew what was coming, but it still came as a shock. As i sit there and the Doctor tells us i have cancer, i sit there as a deer in the headlights. My mother crying, only time ive seen her cry, i sit what do i do? I end up just nodding and cuddling my mother. 

This cancer wasnt just a glioma, this was glioblastoma multiforme IDH wildtype.This is a cancer with about a 99% mortality rate with a life expectancy from diagnosis of 12-18 months. I later found out the reason it took such a long time to diagnose was because it had been to 2-3 pathologists as the cancer was very difficult to diagnose, i think it had been to Plymouth , Birmingham and London. So, not a cheeky bit of cancer that can be cut out, the surgeon refusing to do anything i had one choice…

I was put on a treatment plan of intense radiotherapy followed by intense chemotherapy. To make matters worse, we would be going into hospital every day- bar Christmas day. Then i had to take chemotherapy in tablet form on top of epilepsy meds and steroids. I was taking about 30 pills a day. I was told to come off the steroids which was fine, until i went to sleep, then woke up with a headache that felt like i was stood on an earthquake and getting washer machined out of a tsunami. 

I came off chemo in august.

Fast forward to 2019 December/2020, we were all happy that we were all here still to see another Christmas. However, the world was going to change for everyone this time. Going into lockdown, steroids and food do not go well together… i was 11/12 stone and then i was 15/16 stone. So i got myself a recumbent bike and i cycled, sometimes for 3 hours, and glad to say im back to 11 stone once more.

After getting my tribalism mentality for exercising back i decided i wanted to do more, i needed to do more… all my MRI scans were clear so why not! My mum had just told me to go to a crossfit gym near where we live. WILLPOWER FITNESS. This gym/box truly changed my life, from barely being able to lift a weight i have just made a personal best of 125kg deadlift!

My coach Will Woods and many other in the gym made me feel so welcome. They all made me feel like it was okay to fail, and thats what life is: failing over and over again until you succeed.

Next month, another person from the Box and i will be competing in an adaptive division in cardiff and then onto London!

I have left out some details. However i would to thank to the rugby club, Lee, Marco, Toby, both Woods families, The Newmans, Eloise and her family, Cam, Frank, Emma, Cuddy, Rhys, Rob, Eoghan, Chelsea, Millie, Evie, Sonny,  my family and my friends.

I could not have done this without you.