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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Ian Kermath

Ian Kermath was initially suspected of having dementia, but he was diagnosed with a grade 4 glioblastoma (GBM) in April 2017. For weeks he had been experiencing memory loss and an inability to perform tasks he had previously found simple. He was told his tumour was inoperable and that radiotherapy might only extend his life by a month, so he opted for palliative care. He died peacefully at his home in Broom, Bedfordshire, four months later. He was 67 years old.

Here is Ian’s story, as told by his widow Chris …

Ian was a highly intelligent, fairly quiet man, and when he spoke everybody listened. He was very proud of his Scottish heritage and had his own business, working as an IT-based purchasing consultant. He enjoyed sailing, liked rock, jazz, blues and classical music, and he loved anything to do with engines. He would often take things apart, but that didn’t necessarily mean they’d get put back together again. Our house is more than 2,200 years old so he was a dab hand at DIY. His dad was a builder so he picked up a few things from him. Ian was also a keen golfer and an armchair supporter of Arsenal Football Club. He was a really lovely man and we were married for 41 years. I miss him terribly.

“He used to do The Telegraph’s cryptic crossword every day and towards the end of January 2017 he said they must have changed compilers because he was finding them difficult.”

I thought that was strange. I’d only ever been able to chip in with the last couple of answers but Ian had always been able to do them all. His breadth of general knowledge was incredible. I told him he should go to see the doctor because something wasn’t right.

It was only after he started forgetting things at the end of February that I eventually managed to get him to the GP. Behind Ian’s back, he said it could be dementia, which is what I suspected. I’d been in the car as Ian had driven back from Bedford one day and, although it was a route we both knew well, he couldn’t remember which way to go from the T-junction.

“It was obvious to me then that things were really starting to go wrong.”

The doctor made a couple of referrals, including one to investigate possible sleep apnoea as Ian appeared sleep deprived. The first of these appointments was at Papworth Hospital in Cambridge. It took place at the end of March by which time Ian was walking in a strange way, taking long strides. I had to support him across the car park. The consultant immediately ruled out sleep apnoea as the cause of Ian’s symptoms. He offered to refer us but we already had an appointment in mid-April at a stroke clinic in Bedford Hospital.

When we went to the clinic, Ian was given an MRI. By the time we got back to the consultant’s room, the scans were in and so we all went to take a look. What we saw was an obvious white mass larger than an egg in Ian’s head. The consultant exclaimed, I swore and Ian wasn’t quite sure what was going on. Within the space of three months, his mobility had deteriorated so much that he was having to use a wheelchair to travel relatively small distances.

“Now we knew it was because he had brain tumour.”

We were transferred to Addenbrooke’s Hospital, Cambridge, to see a neurologist but, because of several bank holidays, we had to wait a fortnight for the appointment. When we finally went on 27 April, a neighbour kindly offered to drive us. The consultant told us Ian’s tumour was a grade 4 glioblastoma (GBM). He said its location in two lobes of Ian’s brain meant that it couldn’t be operated on without leaving him worse off than he already was.

“He spoke to us about radiotherapy but said it would likely only give Ian an extra month, so we made the decision to go for palliative care instead.”

We’d actually already been referred to a multi-agency team made up of hospital staff, Macmillan Cancer Support workers and GPs who I could call 24 hours a day. I rang them too, at 4am when I was at my wits’ end. We were at the point where Ian was walking around the house we’d lived in for 35 years trying to find the bathroom and becoming less able to use his left-hand side.

“It was horrible to see the deterioration.”

Ian was already having steroid treatment and this worked well for a while. His emotional side had been impacted by the tumour but the steroids helped to bring him back briefly. From April to June, we were able to talk to each other with Ian understanding me. We said everything we wanted and needed to and were able to get our affairs in order. His carers came in twice a day at the start but by the end he was bedridden and they visited us four times daily. We set Ian up in a hospital bed downstairs and he was as comfortable as could be. During his last few weeks, he wasn’t in any pain but he was becoming increasingly unaware of his situation. On 29 August he died. My brother and neighbour were both with me when it happened.

“Thankfully, Ian went peacefully and just stopped breathing.”

We’d had a wonderful moment the day before. I’d woken up, gone downstairs and opened the curtains in the room we’d made up for Ian. It was a beautiful day and he turned to me and said: “Good morning, darling. I love you”. It was the first time in weeks that he’d responded to me properly like that. I told him I loved him and I asked if he’d like a cup of coffee. I went off to make it and when I returned, he was asleep. It’s a wonderful memory for me to hold on to. After that, Ian wasn’t aware of anything that went on. He slipped away at 9.22am the following day. He was never in physical pain and didn’t appear to be in distress, but the change in the man I had known was so stark that it was awful. He was 67 years old.

“What happened to Ian was a tragedy but I can’t help but think he at least got to live 67 years.”

With brain tumours killing more children and adults under 40 than any other cancer, not everyone is so lucky. We need to fund more research to ensure young people who have their whole lives ahead of them are able to live long, full lives. To help with this Mount Pleasant Golf Club in Bedfordshire, which is the golf club Ian used to play for and where I’m vice-captain for the 2023 year, will be supporting Brain Tumour Research as its charity of the year.

Chris Kermath
January 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.

Brain Tumour Research is determined to change this.

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