Father-of-two, Gary from Stoke-on-Trent blamed his headaches and fatigue on being a busy father and juggling a work life balance. After a fall due to a seizure in the middle of the night in November 2022, he was treated for suspected stroke. However, an MRI scan confirmed a mass on his brain. On his 37th birthday he was told he had a brain tumour and later diagnosed with a grade 2 astrocytoma. Gary had surgery in March 2023 and knows that his tumour will grow again. He wants to share his story to help raise awareness of the disease.
Gary tells his story…
The first major sign of anything wrong was when I was taken to hospital after suffering a fall in the middle of the night. At the time both of my children were poorly, my wife, Lisa, was with our daughter Sienna and I stayed in a room with Sebastian. Lisa and I anticipated being up with the children throughout the night as they were both suffering with colds.
I’d noticed previously that my energy levels were depleting, I put this down to my lifestyle. I had a young family which kept me busy and worked in front of a screen for hours each day. I used to wake up at 5am everyday to do a home workout, shower, and then be at my computer for an hour or two before my two children would wake. I had started to hit snooze on my alarm, which was very unlike me and I had headaches here and there.
The night I had my fall, as I was trying to get to sleep. I felt a pain in my head like a drilling. I’d felt nothing like it before. A sensation of needing to vomit woke me in bed. The next thing I remember was waking on the bathroom floor. I had no recollection of what happened, how I got there or even how long I had been there and managed to climb back into bed.
In the morning, I started throwing up and my son raised the alarm with his mum downstairs. When they came to see me, I was talking nonsense and my eyes were black from where I’d obviously hit my head as a fell to the floor.
My father-in-law accompanied me to hospital. I was still confused and he thought I could have concussion. The doctors carried out a CT scan and found a lesion on my brain which they suspected was caused by a stroke. However, after an MRI scan the lesion was identified as a mass and the fall in the middle of the night was actually a grand-mal seizure.
On my 37th birthday, the doctor gave me the most unwanted present, ‘the good news is there’s no sign of stroke but you have a brain tumour’, he said.
I didn’t know anything about the disease before my diagnosis. I was sent home with what felt like limited information whilst the medical team took my case to their next multi-disciplinary team meeting (MDT) meeting.
A week after my fall I was at my parents’ house with Sebastian, he was four at the time. Lisa was out with Sienna at her dance class. I felt really strange aura (what I now know is the feeling you get before you have a seizure) come over me and like I needed to be at home. I started preparing dinner and put some water on to boil. My next memory is waking up as Lisa returned home and Sebastian saying ‘daddy’s been asleep for an hour’. I’d had another seizure. When I came round, I could talk, but wasn’t making any sense. Lisa asked me questions including if I needed medical attention to which I replied I think so.
I had three more seizures in quick succession, including one at the hospital. Lisa was terrified, expecting the worst as medics were waiting for my body to stop fitting so they could carry out tests and find out what was happening, with each seizure taking me longer to return to consciousness. I was put on medication to control my seizures and steroids to limit the swelling of the tumour. The medical team were still waiting to meet to find out the best course of treatment for the tumour. I was feeling frustrated and couldn’t wait any longer, I decided to utilise private healthcare via my work.
From my birthday in November, right through Christmas, everything is hazy. Although medication was controlling my seizures the steroids woke me up at 3am every day. It became my alone time where I could just be me and let out my emotions.
February came, and I had an appointment at The Alexandra Hospital in Cheadle. It was quite the distance from my home in Staffordshire but I felt like I was finally going to get a plan of action to move forward with my diagnosis.
The consultant told me the mass was 5cm so watch and wait wasn’t an option, I needed surgery to remove it.
I opted for a craniotomy, the alternative was being operated on whilst awake, I couldn’t bear the thought of being aware of what was going on.
A month later I was in theatre. Before going down I tried to keep it together as I said goodbye to my mum and Lisa but I was frightened I might not wake up. Before the operation Lisa and I spent time going through our affairs and I wrote down important information in case my cognition or memory was impaired after the operation or worse, that I didn’t survive.
Four hours later I woke up in a ward. I felt huge relief as the surgeon told me of how impressed they were with how I had handled everything so far and I feel very lucky to be living with little to no side effects of the surgery.
Whilst the operation was a success, as we all know, cancer always comes back and eventually I could need further surgery along with radiotherapy and chemotherapy.
Whilst I was incredibly lucky that my tumour was able to be operated on, I had a superb network of family and friends, especially after having my driving licence taken away from me because of seizures. I worked for a company which offered private medical care – not everyone has access to these things and I feel fortunate to have been able to lean on these things during my diagnosis.
This disease has torn my family’s world apart. We live with uncertainty and that has been horrible to deal with. I thought about everything that I could miss in the future, such as walking my daughter down the aisle, spending time with my son and eventually becoming a grandparent.
We’ve been open and honest with the children; they know that sometimes daddy gets dizzy spells and has a lump in his head. I want to show them that I am still their dad, and I try to be as positive as I can.
Which is why I decided I wanted to undertake the National Three Peak Challenge in May 2024. To push my body mentally and physically whilst raising as much money as possible to help to combat this disease and stop other families going through the same torment that it has brought my family.
A brain tumour may have changed the way I live and think, but the one thing it can’t take away from me and that is hope.
Gary Mackay
November 2023
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Gary’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure