Michael, a 44-year-old builder from East Sussex died in July 2023, just three weeks after he was diagnosed with a glioblastoma (GBM). His family initially attributed his low-mood and fatigue with the everyday pressures of a hectic work schedule and a very young family. The doting father’s tumour, which was growing like a web, was deemed inoperable. His partner, Connie was told that treatment would kill him. Michael died in a local hospice. Connie is working with Brain Tumour Research to raise awareness of the disease which made her a widow and left their children without their dad.
Here is Michael’s story, as told by his partner, Connie…
Everything happened so quickly with Michael, for a few months leading up to his brain tumour diagnosis. He seemed to suffer with low-mood, fatigue and appeared very detached, although, we didn’t overthink this at the time as he was a chilled introvert. He was physically fit and active, and worked hard as a builder.
We had a one-year-old at the time. Neither of us were sleeping well and Michael was busy at work, we thought this combination of things could be the reason for these subtle changes in how he was feeling. Perhaps more his lifestyle than anything medical.
“We even considered that his symptoms could be a blip in his mental health.”
Michael had never experienced poor mental health before and while it made sense on paper, it didn’t sit well with me, I didn’t believe this was the cause.
Following a GP appointment at the end of May 2023, we were referred to a neurologist at Nuffield Health Brighton Hospital. Whilst waiting for the appointment, there was another trip to the GP who confirmed that neurology was the best team to get to the bottom of what was happening.
“Within the month we waited, Michael’s speech became muddled, and everything got worse.”
Mid-June, Michael had an MRI scan of which results showed areas of concern. The medical team told us it could be inflammation from a previous virus, a lesion or mass. I don’t remember them using the word tumour. In the days that followed, Michael’s condition became worse. He was struggling physically almost as if his body was shutting down.
We were advised to go to Royal Sussex County Hospital where Michael was admitted. The doctor said ‘you do know this is serious’. They told us that the web-like tumour growing on Michael’s brain was cancer which he wouldn’t survive. They went on to tell us that there was ‘probably no treatment given how aggressive it is’ which they could tell from the scan image.
We’d been through a hellish month waiting for answers, going from having some kind of hope that he was being checked out at hospital to being told Michael was going to die. I sat there after being given the news on my own, thinking about our children growing up without their dad. My world shattered.
Michael had the biopsy which confirmed he had a multifocal high-grade glioma more specifically a glioblastoma (GBM).
It had impacted his cognition, speech and communications and he was showing signs of confusion. He seemed to recognise his family and was aware of us at his bedside but because he couldn’t talk, it’s hard to know exactly how much he understood.
The whole family began to search online to try and understand Michael’s diagnosis. Eventually, in a room with his whole medical team consisting of occupational therapists, nurses, neurologists and speech and language therapists, they agreed that in his case, treatment would be ineffective.
The cancer seemed to advance daily and by the time they would be ready to administer any NHS standard of care it wouldn’t make a difference, and the effects could kill him because of the state of his health.
On 7 July we had the verbal diagnosis of Michael’s brain cancer, which was confirmed with the official results from the biopsy on 19 July. He died in hospice on 30 July.
The children were one and five. That was one of the worst parts about what happened. Una was five. At first, I felt I needed to protect her and not give her details of what was happening to her dad. She kept asking questions but eventually I was honest with her.
“It was shocking to have to sit down and tell my five-year-old that her dad was going to die.”
I explained that daddy had a cancer in his head and with cancer, some can be cured with medicine, but daddy had a cancer that couldn’t be cured.
She burst out crying, grabbed me and sobbed and then went about her day. There have been lots of questions since and it’s been up and down for all of us. Hugo was one and could barely talk. He is now three and talks about daddy a lot. We’re surrounded by his pictures.
Amongst the things I have learnt, is that brain tumours and cancer can be vastly different for each patient. Michael’s diagnosis took us by complete surprise, and we had no chance to react. It shouldn’t happen, but it does.
No matter who you are, what you do or how seemingly healthy you are, brain tumours are indiscriminate and can affect anyone at any age.
Connie Powney
October 2024
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 touched by Michael’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