In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
After suffering a seizure at his home in Milton Keynes in 2016, Brian Carrick, then 54, underwent a craniotomy to remove a grade two oligodendroglioma, which had been growing unnoticed for at least 10 years. He thought that he would be fine after surgery and treatment, never realising the cumulative effect of radiotherapy, but the reality is that today Brian can no longer work, and regularly feels overwhelmed and completely exhausted.
Brian tells his story...
Looking back there were no signs that anything was wrong, I had been working absolutely fine, no headaches, numbness or blurred vision. I was a consultant, working in computer security, and it was vital to be able to mentally deal with a lot of detail and communicate effectively. So if something had been off, I would have been sure to notice it straight away.
My life changed overnight in October 2016 when I cycled home from a day’s work and was met by my wife Emma as I came into the house. This is the moment it all goes blank and I don’t remember what happened next. Emma has since filled me in.
She remembers me walking in through the front door, heading up the stairs and coming straight back down, like I had forgotten something. She had started a conversation with me and I had looked back at her with a blank expression, only responding to her questions with the words ‘yup’ and ‘nope’. I have always had a playful personality and pranking Emma was a weekly thing, so she thought I was being silly at first and that this was Brian, being Brian.
It was then that I wasn’t able to speak and she realised something was wrong.
“I fell to the floor like a falling tree and began fitting and kicking out. Emma must have been so worried as when the paramedics came they tried to stabilise my heart rate because they thought I was having a stroke.”
I was taken to Milton Keynes University Hospital, where I was stabilised. I remember being surrounded by lots of doctors discussing what was wrong with me. We were there for several hours and the paramedics who brought me to the hospital came to visit me a few times which was nice. Their visits and a cup of hot chocolate are the only things I remember of that night. Emma decided to head home and gather some things and let a few people know what had happened, though I now know it was the Great British Bake Off final, so that may be why she went home!
On the days that followed I underwent several MRI scans. I found them very uncomfortable, being still in pain from the fall. It was then that I got the news that I had a brain tumour and that the incident was actually a seizure caused by the tumour. Despite this diagnosis I felt positive that they had identified the problem and my treatment was being taken on by an expert at Oxford University Hospital who specialised in brain tumours.
The location of the tumour was in my front left temporal lobe which controls your writing and speech when you are right-handed. There was a possibility that they might need to operate on me while I was awake, which is something I desperately didn’t want to happen. I underwent several tests, which included benefitting from new research performed in recent years at Oxford into how the brain thinks of words. Further tests concluded that it would be safe to operate under anaesthetic and that my speech would be OK. I’m so thankful that this research took place and was a key aid allowing my surgeon to remove 97-98% of my brain tumour without harming my speech or writing.
“I went in for surgery on what turned out to be an oligodendroglioma in February 2017. Oxford University Hospital dealt with me splendidly and I was home after only five days. I was left with a very neat number-seven-shaped scar by my ear, so neat that some people may have thought it was fashion!”
The scarring is now minimal and I am fortunate not to have any disfigurement to my face.
During the next three months post-surgery and pre-treatment, I spent my time crazily relearning how to do things (especially stuff to do with computer security) and was really getting somewhere. Happily, I was also continuing to get quite a bit of work.
I had a six-week course of radiotherapy, during which I managed to continue working even though it was really exhausting, followed by PCV chemotherapy from October 2017 to June 2018 to remove the residual brain tumour.
Half-way through the chemo, having had no prior interest, I suddenly realised I had a burning desire to play the guitar so I taught myself little bits of different songs and also did the same on a keyboard.
Emma and I are Catholics and would go to mass regularly, although since COVID we access masses online because of me being vulnerable. Each week we say the same prayers, but despite the familiarity, I find myself unable to remember more than the first three or four words. My memory is really quite bad, but strangely, I can still recall quite a lot of geographical facts!
We were very open with friends and family about my diagnosis and treatments. I lost my sister Margaret to breast cancer at the same age as I was when I was being treated for a brain tumour, so I wanted everyone to understand what was going on and not to worry. Margaret suffered horrendously despite the great efforts to save her with surgery, radiotherapy and chemotherapy. Naively, I felt much luckier with my situation that this was something that could be dealt with.
During the chemotherapy treatment I did my best to get back to work, but I was having to relearn everything and kept finding that I was collapsing due to overworking my brain.
Companies I applied to didn’t make allowances for my condition – I couldn’t complete enough to pass a recruitment questionnaire – so I was never taken on permanently.
When I saw my consultant in 2020 just as the UK was about to go into lockdown, he was quite surprised I was trying to work at all.
“Emma and I were foolishly very trusting. No one explained how different life would be for me post-treatment. We thought that doctors would take the tumour out and I would get on with life. No one explained the cumulative effects of radiotherapy, which has been very damaging.”
Today I find reading a disaster as I don’t retain anything. By the time I’ve read a paragraph I have to go back and read it again because I’ve forgotten what was at the beginning. Doing what to others might be considered minor things can leave me feeling completely exhausted and anything which involves me having to think a lot can end up with me feeling totally overwhelmed and can lead to me collapsing.
Getting my Personal Independence Payment (PIP) was a real trial and took a year and an appeal to sort. Many of the questions were totally irrelevant to someone with a brain tumour. I can walk downstairs at the beginning of the day, but later in the day I may collapse and not be able to go back upstairs. I was very grateful for the support I got from Brain Tumour Research’s Member Charity brainstrust. They pointed out that my tumour should be termed ‘indolent malignant’ and treated as cancer because at some point it will become high-grade.
“Knowing that it’s impossible for me to get any better is very disheartening, and the constant worry about money is stressful.”
Emma and I have been together over 35 years and she has been at my side through this whole process. She hasn’t been able to go back to work as obviously it’s such a worry that my brain may become totally overwhelmed, affecting my mobility and causing me to collapse.
“I dread to think what could have happened if Emma hadn’t been home that very first day, or if I was driving at the time of the seizure. I’m very lucky to be here and able to tell my story, unlike so many others that have been struck by such a devastating disease.”
I continue to have six-monthly MRI scans to check whether my tumour has returned and become high-grade.
Meanwhile, having discovered that Brain Tumour Research’s head office was practically on our doorstep just after my diagnosis, we started supporting the charity by volunteering and fundraising. Emma has particularly enjoyed taking part in the Wear A Hat Day campaigns, including Wear A Christmas Hat and Wear A Hat Day with Flowers and for several years now has even worn a different hat each day during March – Brain Tumour Awareness Day, raising over £7,600 to date.
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.
Together we will find a cure