In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Husband and father Mike Scott was enjoying early retirement in Gloucestershire after a successful business career when he was diagnosed with a glioblastoma (GBM). He underwent surgery and died nine months later in the most tragic of circumstances during a BBQ with his close family. His widow Mary made a significant donation to Brain Tumour Research which enabled the launch of the fourth Brain Tumour Research Centre of Excellence at the Institute of Cancer Research (ICR) in Sutton, Surrey.
Here his wife Mary shares his story ….
I laugh when I look back and remember how Mike and I met. It was in the most unlikely of circumstances but, as soon as I saw him, I knew I was going to marry him. I was on a bus with some friends in Wolverhampton when he got on. He was very handsome, sculpted, with blonde hair and wearing Levi’s and a leather jacket.
He looked at me and smiled. Coincidentally we were all going to the same discotheque but it was a little while before we got together. I was so young, 18, but I just knew he was the man for me. At the time I was a pharmacy technician with Boots and Mike was an apprentice at an engineering company in Wolverhampton and studying at night college.
My parents loved him, everyone did, and being with him was wonderful. We had no money and when Mike passed his driving test, we borrowed from my father to buy a Triumph Herald we called Henry and paid the loan back every Friday at £3 a week.
He proposed after a couple of friends of ours got engaged. He wanted to buy me a ring but money was so tight he got another job as a barman at night and saved for weeks to buy me a diamond ring which he gave me on bended knee.
We got married in July 1973. Mike was very intelligent. I always said he could have gone to Oxford or Cambridge but that hadn’t happened so I encouraged him to go to university, in fact I wrote a letter to the head of electrical engineering at Aston University and Mike was invited for interview – we went together on the bus – and he was offered a place.
We managed to scrape enough money together to buy a dilapidated terraced house in the Wednesbury. Our family chipped in on the renovation project and together, with some help and guidance, we did it up with Mike turning his hand to everything, plastering, plumbing, electrics.
I was still working in pharmacies across the West Midlands and, as Mike was doing his finals, we found out I was pregnant. Going to university gave Mike enormous confidence and he graduated with a first, of course he did! The circumstances meant he needed to find a job pretty fast and he was taken on by Avery as a design engineer.
We moved house to a nicer area in Walsall and did a lot of work to create our family home where we brought up our son Ben. Mike rose up the corporate ladder, he was designing weighing scales and electronics, and travelled a lot.
Things were quite settled and I decided I needed a new challenge so I gave up my job and studied English Literature at the University of Wolverhampton and then did my PGCE in order to start a new career as a teacher.
I taught in A level colleges around the West Midlands. I loved it and felt I had found my calling. But change was coming as Mike was headhunted for a job as technical director for Strix, the global leader in the design and supply of kettle safety controls, in the Isle of Man. I didn’t really want to go but he was being offered a fantastic package and we just couldn’t say no.
So off we went, we ended up staying for 25 years and, despite my initial reluctance, it was wonderful and we had a great life there. I was very fortunate to get a job at what is now University College Isle of Man, initially covering maternity leave but then in a permanent role. They were happy days. Mike was busy travelling mainly to China and he made a lot of money as the company was sold twice and he had shares. I loved my job and felt I was making a real difference to young lives; it was exhausting but great. We had a very comfortable, happy family life.
We had lovely family holidays together. Although Mike was away a lot for work, we also travelled together, he always loved driving and was a great planner. He was always calm and I felt safe when I was with him.
It was while we were away on a road trip in America that warning bells started to ring. On one occasion on he was driving us back to the airport when he became confused about which exit to take and struggled to tell his left from his right hand. It was so out of character. Then, when we got home, I noticed he was having trouble making sense of a complicated spreadsheet he was using to plan a big car festival; he just didn’t seem to know what he was doing.
Ten years ago, we bought a holiday home in the Cotswolds and then moved here full-time when we both retired. Mike had always loved his cars and got a Caterham in his beloved British racing green. He was part of the Caterham Club and they went all over the place, he described them as a band of brothers with no pretentions. Members came from all walks of life and he loved the camaraderie. He was not far away from home after one of his trips when, in 2017, he had a really bad accident. Someone ran into him on a bend, the car was a write-off and Mike was badly injured. He was lucky not to lose a foot and didn’t walk properly for a year, there were horrendous complications but somehow, he got over it. It didn’t put him off and he used the insurance pay out to buy a new Caterham.
The following year we were more or less back to normal and went ahead with a motorhome trip down the Pacific Highway that we’d had to cancel after the accident. Mike was behind the wheel, doing what he loved.
“At one stop I took a photo of him and, don’t ask me how, but I just knew then that would be the picture which, one day, I would place on top of his coffin. I could never have imagined how soon that time would come.”
As part of the trip, we stayed in a lovely little place in San Diego. There were more telltale signs of the horror that was to come as Mike couldn’t manage to open the key safe. It seemed trivial at the time but, looking back, all these things were signs of course; his problems composing emails, the slow tiredness that crept up on him, the sense of being muddled.
On top of this Mike started to fall over, he was a proud man and didn’t want any help, and his speech started to go. I knew then that something was seriously wrong.
There were a number of trips to the GP and some blood tests but these showed up nothing. At one point I even googled brain tumour so, deep down, I must have known what was going on but Mike had none of the symptoms you might expect such as headaches or seizures.
The next step was a CAT scan in Cheltenham. I remember looking in the mirror as I brushed my teeth as Mike answered the phone the next morning. It was our GP. I looked at my reflection and thought to myself ‘this is the day your life changes forever.’ And I was right; what happened next was like a nuclear bomb going off, I felt as if my life was imploding.
“I knew it was bad news when we saw Mike’s consultant and there was a nurse sitting by him. They showed us Mike’s scan on the screen. It was a grade 4 glioblastoma (GBM)and the consultant’s words were stark. He said: ‘This will get you. We can operate but this will get you in the end.’”
Things were as bad as they could get. It was late September by then and the consultant said surgery would buy Mike some time, without it he would be dead by Christmas. We decided to go ahead with the operation, an awake craniotomy, but it wasn’t without risk. Mike used some money he had put aside to buy a new car to fund the operation privately and it took place at the John Radcliffe Hospital in Oxford.
The surgery went well, Mike lost his peripheral vision but we were told this would come back – sadly, it never did – but aside from this, things were pretty normal for a while. We were told that the whole tumour had been removed but we now know this isn’t as positive as it sounds as the nature of this tumour and the way it invades the brain means it always comes back. Mike was told it would be at least two years before he could drive again and this was such a bitter blow and reduced him to tears when he realised he would have to give up volunteering as a driver on our local community bus.
He went on to have treatment but his immunotherapy caused a severe rash. There were more falls and, on one occasion, he fell over doing the gardening and I had to call our neighbours round to help get him up. It was spring of 2020, just before lockdown, that we learned the tumour was back with a vengeance. We were told Mike had two to four months to live.
Looking back now, it’s hard to see how Ben and I got through it but somehow, we did. Mike was upset he wouldn’t be around to look after me and was desperate to ensure all our affairs were in order so we spent a lot of time sorting out paperwork.
Mike knew the tumour was growing and said he could feel it pressing against his skull. We got a wheelchair but he refused to sit in it and plans were put in place for palliative care at home. We should have been enjoying our retirement and taking holidays but here we were discussing where the hospital bed where he would die should be set up.
It was a very hot June day and we had invited Ben and his wife Pippa round for a BBQ. Mike had his heart set on steak, which he cooked, and we opened a special bottle of wine that Ben had bought. Ben and Pippa had moved to be close to us after Mike’s diagnosis and it was lovely for us all to be together but the event was to take the most tragic of turns.
I watched in horror as Mike started to choke, the colour was training from him and he was gasping and making the most dreadful noises. He was choking, right before our eyes. I dialled 999 and, desperately we gave him CPR. There he was, my lovely husband dying in front of my eyes. The paramedics managed to get him breathing again but he was brain dead by then. He was taken to hospital and I stayed with him, holding his hand and talking to him. I was caring for him and gave him one last kiss as he took his final breath and that was it, he was gone. It was June 30, 2020, and Mike was 69.
It was such a cruel, cruel death and I wouldn’t wish that on my worst enemy. We dressed him for his funeral in his Caterham top and hat. He was brown from the summer sun and he looked so good, as if he was having a snooze after coming home from a race.
“We thought we would have longer and God, how I miss him. Mike was so considerate and kind, he always saw the good in people and had time for them and never had a bad words to say about anyone.”
We so nearly made it to our golden wedding anniversary. The manner of his death was so horrible and has left me deeply traumatised. I do take some comfort that he was at home with us in our garden. I couldn’t bear to see that garden anymore and moved soon after but I am haunted by the what ifs, what if I hadn’t bought steak, what if I had cut it up for him?
I have been told that Mike would have been in dead in seconds, he wouldn’t have known anything. He lay there, brain dead in hospital for three days, so I have seen him die twice.
Since his death I have had periods of being very low and wondering how I can keep going but I know I have to somehow find a way to find peace; you have to walk your own path and do so in your own time.
It can’t be right that, in these days, it’s a death knell to be told you have this brain tumour. I count myself very fortunate that I have been able to make a £1m donation which has enabled Brain Tumour Research to open its fourth Centre of Excellence at the ICR in Sutton, Surrey. It will focus on helping to find a cure for high grade brain tumours in children and that’s especially fitting as Mike adored children and would have liked to have been a paediatrician. To think of those poor parents whose children are affected by brain tumours is absolutely dreadful.
“My hope is that, with this legacy, Mike’s death won’t have been in vain, that his name will live on and that the money will go some way towards finding a cure.”
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 historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.