In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Motorcycle lover, Paul Marshall, 59, from Washington, Tyne and Wear, started having headaches and problems with his vision in August 2020. He was initially treated for sinus problems but when the symptoms persisted, he had an MRI scan which revealed a glioblastoma (GBM) brain tumour. Paul had three operations and had chemotherapy and radiotherapy. He died at home in July 2022 with his loving family by his side. His wife, Michelle, is taking part in Wear A Hat Day to raise money for Brain Tumour Research.
Michelle tells Paul’s story…
Paul started getting headaches and blurred vision in August 2020 but in September when we were driving our son, Jordan, to Edinburgh University, Paul kept missing things on his left-hand side. He was an excellent driver – he drove a fork-lift truck at work – but when we got home, he reversed onto the garden, which was unlike him.
Paul went to the GP who said he was having sinus problems. He was treated for that, but he wasn’t getting any better. He was still having problems with his eyes, but because he had diabetes, he thought he may have had glaucoma.
Paul went to the optician who spotted something behind his eye so he was told to go straight to Sunderland Eye Infirmary. They also saw something behind his eye and told him to go straight to Sunderland Royal Hospital because they thought he may have had a stroke.
Paul’s brother, Gary, and I took Paul to accident and emergency, but we weren’t allowed to be with him because of COVID.
Paul had an MRI scan which revealed a brain tumour. He was on his own and he was scared. It was totally unexpected and we were all devastated.”
Two weeks later, on 29 September, Paul had an operation to remove the tumour at the Royal Victoria Infirmary (RVI) in Newcastle. It went quite well and I was surprised how well he looked. I expected to see him attached to lots of tubes, but he was sitting up and eating!
Paul had a towel over his head to begin with because he had to protect his eyes from brightness. He had agreed to take part in a trial where a fluorescent liquid dye was used to make the tumour glow under a blue light microscope.
The surgeon said the operation went well and he had removed as much of the tumour as he could, but said he couldn’t take all of it because it would have affected Paul’s mobility and sight.
“We were told Paul had a glioblastoma(GBM). We didn’t want to know the prognosis but I eventually googled it and saw it was 12-18 months. I was in total shock because he looked so well.”
We decided to take it day-by-day and make the most of our time together. We had been due to get married on 31 October, but we had cancelled it when Paul received his diagnosis. But we managed to get an emergency marriage licence because Paul had a terminal diagnosis.
“We got married, as originally planned, at Gretna Green on 31 October. It was an amazing day; a hawk delivered the rings and we had a bagpiper, it was so special.”
In November, Paul began a six-week course of radiotherapy and oral chemotherapy at the Freeman Hospital in Newcastle. At first, he was OK but after a couple of weeks, he became very sick and he had a metallic taste in his mouth.
Paul had a break from treatment over the Christmas period but in January 2021, he started having a stronger dose of chemotherapy. He had six cycles which lasted until June.
Paul hated not being able to drive, so we both bought electric bikes. We had a lovely summer in 2021 and we went on lots of bike rides. We even cycled seven miles to Roker beach and watched dolphins swimming in the sea, it was fantastic. The bike gave him his freedom back.
“In September 2021, Paul had a check-up MRI scan which showed the tumour had grown. We always knew it would happen, so we just had to deal with it.”
Paul had a second operation on 12 October. We thought it had gone well, but his operation scar wouldn’t heal properly. He became really unwell, his mobility went and he had some falls.
On 25 November, Paul had a fall at home and he was unresponsive. I feared he’d had a stroke so he was taken by ambulance to Sunderland Royal Hospital.
“He was unresponsive in hospital, and I even had to sign a ‘do not resuscitate’ form. They told me to prepare for the worst and wanted me to either take Paul to a hospice or back home.”
On 3 December the RVI requested Paul have a further MRI scan at their specialist centre. It detected a huge area of puss in his head. He had a massive infection in his brain, caused from his previous operation. He had another operation to remove the
infection, some bone and more tumour. Paul eventually recovered, he was able to eat and speak again, and he was discharged just in time for Christmas. After thinking I was going to lose him, it was a huge relief when Paul came home.
I went off work from my job at HMRC to look after Paul at home. His brother, Gary, and his sisters, Janette and Susan, took it in turns to be by Paul’s bedside, so he always had someone with him. Paul was declared partially sighted in his left eye. He was given a stick and he bought a mobility scooter. He was told he was no longer strong enough for further treatment or surgery.
In April 2022, Paul was admitted to the Queen Elizabeth Hospital in Gateshead after having further falls and mobility issues complicated by a urinary tract infection. He was discharged on 18 May with a hospital bed and care package in place.
From June, Paul was placed on end-of-life care at home with help from district and Macmillan nurses. Paul was a biker so just before he died, 80 bikers did a drive past the house, organised by the Dragonslayer Motorcycle Club.
“They all revved their engines for Paul and he could hear it. It was a lovely gesture.”
Paul then passed away on 13 July 2022 with me, Gary, Jeanette and Susan by his side.
I’m taking part in Wear A Hat Day for Brain Tumour Research because Paul loved wearing all sorts of different hats, and his nickname was Hat. I’ll be doing it on 26 March because that would have been Paul’s 60th birthday.
There is so little government funding for research into brain tumours and there haven’t been any developments in how brain tumours are treated for years. In America, there are all sorts of different treatments which aren’t available in the UK. We just have the same old chemotherapy and radiotherapy. I want to see money spent on research and new treatments.
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.
Together we will find a cure.