Henry from Norfolk was just 35 when he died of a glioblastoma in May 2024. His diagnosis came after his wife, Rebecca, noticed a change in Henry’s personality which they put down to stress. His symptoms worsened and a CT scan discovered the inoperable tumour on his brain. Despite radiotherapy and chemotherapy treatment, the tumour was too aggressive, and Henry died 11 months after diagnosis. He leaves behind a four-year-old son, Edward.
Here is Henry’s story, as told by his wife, Rebecca…
I’d noticed a change in Henry’s personality around a year before he was diagnosed with a brain tumour. Gradually his sarcasm and bluntness got worse and peaked in May 2023, whilst we were on holiday in France with friends and our son, Edward who was two at the time, this became more visible.
We were bickering more than usual that even our friends noticed. I started to feel intimidated by this and he made spiteful comments about my appearance which wasn’t like him.
There was no filter to what he said, and I didn’t recognise the man I had married.
Shortly after we got back, he began getting bad headaches with vomiting and he had to sit in a dark room to allow the pain to pass. In June he went to the GP who prescribed anti-sickness medication which didn’t help him at all.
He struggled to keep down any food and spent almost a month poorly which was a difficult adjustment for someone who was never ill.
By mid-June he had a CT scan at Norfolk and Norwich University Hospital which discovered a tumour on his brain. Quite quickly he was referred to Addenbrookes Hospital in Cambridge for further investigation.
This diagnosis meant that Henry was no longer allowed to drive, shoot or play rugby, his world had changed dramatically.
It was hard to take everything in. I’d been dealing with being on the brunt of Henry’s symptoms whilst parenting Edward. I was tired and struggled to understand exactly what Henry having a brain tumour meant.
We didn’t know if it was life-threatening or curable, but there was a sense of relief that we knew it was a brain tumour that had caused these changes in Henry and there was an answer for his behaviour.
He had a biopsy of the tumour which was inoperable due to its location. Results confirmed Henry had a stage 4 brain tumour and we were initially told he had a prognosis of between 12 months and 10 years.
Further investigation confirmed Henry’s tumour type was a glioblastoma. Not knowing anything about brain tumours, we both still felt hopeful.
He was young and played rugby regularly. We assumed this combination of things would be favourable for the longer prognosis.
He underwent radiotherapy and chemotherapy while also taking steroids. The treatment caused some hair loss and significant weight gain, which really knocked his confidence and left him feeling very self-conscious, especially as he had always been fit and healthy.
Treatment for brain tumour patients can be incredibly tough, often the stronger the option the harsher the impact on the person going through it. For Henry, it was difficult not to feel like he was just a number in the system, and we soon realised that the NHS could only take us so far.
Meanwhile, Henry’s parents, Linda and Robert, explored options outside the UK. They paid more than £4,000 of savings to send a sample of Henry’s tumour for genetic testing in America, something seemingly not offered in this country. Heartbreakingly his condition deteriorated before the results came back.
He finished NHS treatment before Christmas 2023 and had a two-month break from December into February 2024. His personality returned to his normal and we all felt optimistic that the tumour was stable.
Everything came crashing down when Henry complained of headaches once again, confirming the tumour had grown.
His cancer had also spread to his spine and he was given more radiotherapy, but the tumour was fast-growing, causing him to lose mobility in his legs. Seeing the physical impact the second tumour had on his body, when he could no longer walk, made everything very real.
By April, doctors confirmed there were no more treatment options.
Henry’s body was shutting down and his care plan became about managing his pain.
Henry was initially admitted to the Norfolk and Norwich University Hospital in order to manage his pain. However, we were very disappointed with the care that he received which mostly seemed to involve him being asked “would you like…” rather than being told what was best. This led, on several occasions, to Henry refusing various treatments such as physiotherapy, as this would cause him additional pain. He then returned home for a very short period and we were supported by carers who came to our home five times a day. It was a struggle for me to look after him and Edward. Eventually he moved to Priscilla Bacon Hospice in Norwich where he died in May 2024.
Since his death, we have raised money for Brain Tumour Research with a collection at his funeral, and via a rugby match.
He was a well-loved team member at Oakbank Game and Conservation, where he was nicknamed “Mr Environmental” as he looked after support schemes for farmers. His colleagues have been incredibly supportive and at the beginning of October, 10 of them will take on the three peaks challenge in Henry’s memory.
Throughout his illness Henry was determined to carry on in as “normal” a way as possible and worked until six weeks before he died. He also managed to go on holiday and to a Rugby World Cup match in France.
Henry also relied on a very strong support network of friends who didn’t allow him to feel sorry for himself. He was very brave and never gave up, he just wanted to live.
Henry was given a very limited range of treatment options, and it seems as if there have not been many advances in the way brain tumours are treated, when compared to other cancers.
The reason I’m sharing my story with Brain Tumour Research is to support future brain tumour patients. I’ve witnessed first-hand their unpredictability and how things can change in an instant. I’d encourage people to make the most of the time they have with loved ones.
Rebecca Barringer
October 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, 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 Henry’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.
