Paul, from Solihull, was diagnosed with a glioblastoma (GBM) in March 2015 after suffering a catastrophic seizure out of the blue. He had debulking surgery followed by radiotherapy, followed by chemotherapy. After developing an infection, whilst being treated for complications which arose from his brain tumour treatment, Paul died just seven months later in October. He was 48. His widow, Joanna, is calling for the Government to invest more into research for the disease, for kinder treatments for patients and better outcomes families affected by all types of brain tumours.
Here is Paul’s story, as told by his wife, Joanna…
We’d been together for 10 years when Paul died, married for seven. He was very loving and the type of person who had a close knit circle of friends. At the time I was working as a lawyer and he was working as an IT specialist and he loved life.
He was conducting an interview at work when he had a seizure out the blue. There were no warning signs, he was mid-conversation with an interviewee. Moments later I had a call from his colleague and the phone was passed over to the paramedics who told me Paul was unconscious and they were unsure if he would survive the trip to the hospital. I couldn’t believe what I was being told, only hours before, Paul and I said goodbye to each other before going to work, like we always did, and everything seemed fine.
Paul was taken to Worcester Hospital and had an x-ray to assess his shoulder which he had shattered due to how violent the seizure was, a scan followed, which found the tumour on his brain.
He was alone when the doctors told him and he told me when I arrived at the hospital. We both knew nothing about the disease before Paul’s diagnosis. We were in disbelief at what had happened and didn’t know what having a brain tumour meant.
Paul had an operation at Worcester Royal Hospital to fix his shoulder a few days after his seizure, before they could do anything else. A week later he had debulking surgery for the mass on his brain, at University Hospital Coventry & Warwickshire.
A biopsy of Paul’s tumour confirmed it was a grade 4 glioblastoma (GBM) and the consultant advised us not to search online. We were never given a prognosis, but understood from the Macmillan nurses that it was a life-limiting diagnosis.
I was amazed how well he was after surgery. After being warned of what could happen, Paul still had his cognition and mobility.
He had radiotherapy every day for six weeks after, which he tolerated. He had the odd headache and had a temperature, but it was more the practicality of the treatment, getting to and from the appointments which bugged him. Paul also hated hospitals but the staff helped him feel at ease.
At the same time, Paul started oral chemotherapy which he had monthly. He was on steroids and other medication alongside his chemo tablets, which he had to take at specific times. He said it made him feel like he had a hangover and mentioned a metallic taste in his mouth, but he wasn’t too ill with it.
Paul had always wanted a dog so for his birthday in July, as he was still on chemotherapy, I bought him a labradoodle puppy called Molly. He loved Molly, I think she helped him enjoy the last few months of his life and encouraged him to stay mobile with walks outside. She kept him going physically and mentally.
In October, Paul started to complain of a pain in his tummy which was caused by constipation, a side effect that patients can experience during chemo. Doctors changed the dose of the medication he was taking to help with this, however, eventually his bowel burst. He was rushed to Heartlands Hospital where he had emergency surgery which was touch and go if he’d survive.
My understanding is that for this to happen is extremely rare and brutal. Paul’s healthcare team were all shocked.
During recovery, Paul got an infection and he died later that day.
It isn’t right that someone so kind and loving as Paul, died in such horrific circumstances. Treatment for his brain tumour weakened his immune system so when he contracted an infection after surgery on his bowel, the odds of him making a full recovery were already against him.
Had the complications, which arose from chemotherapy treatment not killed him, I know the brain tumour would have.
We need kinder treatments for brain tumour patients.
To do this, we need the funding to research better treatment options so no other person and their family has to experience the gruelling side effects and devastation that living with a brain tumour can cause.
Joanna Cook
October 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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Paul’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