In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
At the age of 38, Edward Morrison was diagnosed with a low-grade ependymoma that appeared to pose little threat. After 10 months of treatment, there were no traces of tumour left and it seemed that Edward had beaten the disease. Sadly, the tumour made an aggressive return and, despite best efforts to treat it, Edward’s life was cruelly taken away from him in January 2018.
“Edward’s stubbornness was extremely frustrating at times, but his sense of humour provided some relief from the hopelessness of the situation. One day I asked him: ‘how are you feeling?’ and he replied: ‘not as bad as the guy who signed off my medical insurance’.”
Here is Edward’s story, as told by his brother Pete …
The way Edward coped with his brain tumour was remarkable. What he went through would have shaken the strongest of characters but somehow Edward remained stoic throughout it all. Perhaps it was denial or perhaps he wanted to protect the rest of us, but over the course of his illness Edward remained, somewhat frustratingly, unfazed.
Edward was an outgoing and sociable guy, he loved going out on the weekend and travelled as much as he could. By the age of 38, he had been to some really exotic countries which is why when he had his first epileptic fit, the doctors thought a parasite may be at the root of it.
This first fit happened in February 2014 when he was in a meeting at work. Thankfully he was in a relatively safe environment and not on his own, but it was still a disturbing way for the tumour to present itself. He was living and working in Dusseldorf in Germany at the time, so my mum, the family, his friends and I felt all the more anxious about what was happening to him.
Edward was taken straight to hospital and doctors found that he had several bites inside his mouth, which suggested he may have been fitting during his sleep too. Several MRI, CAT and PET scans later and the doctors were still no closer to identifying a cause. They pursued the idea that a parasite may have infected Edward’s brain but the only way to be sure was to perform a biopsy.
After the biopsy came the distressing news that Edward had an ependymoma brain tumour. Edward told me it was nothing to worry about: it was low-grade and was: ‘not a cause for concern when it presented itself in adulthood’. Of course, we still worried for him but it seemed everything was under control. I now realise that any type of brain tumour is life-threatening, regardless of how ‘low-grade’ it might be.
Doctors advised several rounds of chemotherapy and radiotherapy to reduce the risk of recurrence and Edward took the rest of the year off work to focus on his treatment. By the time Christmas 2014 came around, doctors were optimistic that the tumour had gone. Edward just needed to go back every three months for a check-up scan.
The threat of the tumour returning always loomed over him, but Edward returned to normal life. He went back to work, travelled again and didn’t hold back from hobbies such as skiing; the only difference in him was that he started eating a healthier diet and focused on his fitness to help with recovery.
At a routine MRI scan in August 2016, Edward was given the all-clear once more, so when doctors spotted something unusual in November, we were all devastated and astonished to learn the tumour was back.
I remember our uncle, who has a medical background, was unworried about Edward’s first diagnosis. However, this time, when he heard the tumour was back as a glioblastoma, he only said: ‘oh dear’. Similarly, Edward’s doctors stressed that the tumour was now gravely serious.
The doctors were just as perplexed as us that the tumour could have grown so rapidly in the space of three months. Oddly, the person who was the least devastated by this new diagnosis was Edward. He wouldn’t accept just how serious his situation was and I think he withheld the prognosis from myself and our mum too.
More radiotherapy and chemotherapy followed but this time it knocked Edward for six; he was visibly ill. Due to the tumour’s location in his brain, he was suffering from hemiparesis on his left-hand side. He couldn’t grip things or walk in a straight line and, although steroids helped for a short while, his face was severely bloated from the medication. By August 2017, Edward had deteriorated so much that I had to develop a rota to keep an eye on him. Family and friends visited him in Dusseldorf every weekend and colleagues and friends checked in on him during the week.
Despite his situation, Edward still went out of his way to host friends and family when they came to stay. He would wine and dine them even though he couldn’t enjoy himself like he used to. I was always struck by how he continued to take an interest in people and engage with others, even when he was at his weakest.
Around this time, doctors feared that the tumour was growing again and performed another biopsy. What had looked like growth on the scans was in fact just necrotic tissue but as it was located near to a vein, it was inoperable. Yet again, Edward had chemotherapy to try and improve his condition, and it was during this stage that we started to accept how serious and life-threatening his situation was.
Edward's stoicism endured and he seemed to believe he would overcome the tumour if he stayed calm and did everything the doctors told him to. He was hours early for every hospital appointment, as if being punctual would improve his chances. It was no longer safe for him to live on his own and I wanted to bring him back home to Norwich to continue his treatment. Edward was adamant though that he should stay put; I think this was partly because of the private medical care he had in Dusseldorf, he knew and trusted the medical team, but mostly because he couldn’t accept the fact he needed help. I remember his doctor saying to me ‘the brightest people are often the ones in the biggest denial’.
Between myself and our uncle, we tried in vain to get across to Edward how serious his situation was. We started to grow suspicious that Edward wasn’t telling us the full extent of his situation, so I turned to one of his close friends, Angus, who works in cancer research. Angus told me quite plainly: ‘it will be fatal, but this may be difficult or impossible for him to come to terms with’.
I desperately needed to get through to Edward somehow and convince him to come home. I thought that together with Angus, my uncle, and Edward’s consultant, I could stage some kind of intervention, but the group view was taken that denial was Edward’s coping mechanism and that we should let him be. As Edward wouldn’t come home, I was left with no choice but to start telling friends and family to go and visit him in Germany for one last time and we needed to ensure Edward had constant company at his apartment. They too tried to convince Edward to come home, but he wouldn’t budge.
Edward’s stubbornness was extremely frustrating at times, but his sense of humour provided some relief from the hopelessness of the situation. One day I asked him: ‘how are you feeling?’ and he replied: ‘not as bad as the guy who signed off my medical insurance’.
In October, the doctors wouldn’t allow anymore chemotherapy and Edward started a course of Avastin. It was hoped this would help his quality of life and allow him to stay at home. By this time, we were man-marking him full-time, so I stayed in Dusseldorf with him for four weeks. After the fourth course of the drug, he had another CAT scan and his consultant refused to tell Edward the results without me in the room. Even the doctors knew that the message wasn’t getting through, so they needed me to hear it too. The doctors then stopped the Avastin treatment as it was having no benefit to his quality of life.
I think it was after this uncompromising chat that Edward finally started listening to us. I asked him as we walked back if he understood how serious it was and he said: ‘I’m dying. I’ve done everything they’ve told me to, it doesn’t seem fair.’ This was the only time I ever heard him get close to being despondent. He never complained about the cruel situation he found himself in despite how justified it would of course been; it was remarkable how he handled it.
In early November, my wife Feeza and Edward’s friend Richard were visiting him when Edward collapsed. They managed to get him to the hospital and Edward was so frail that he was forbidden from returning home. He moved onto a palliative care ward for four weeks until we found a nearby hospice for him in December. Friends and family continued to visit him and he was so amazed and humbled by the kindness and compassion they showed. They called him, sent him messages, made long journeys and sacrifices to show their care and concern for him; this meant the world to him and provided him so much comfort in his final months.
My mum, Feeza and I rented an apartment near to the hospice and spent Christmas and New Year at his bedside. Other friends and family continued to visit too, keeping him company and keeping each other’s spirits high. Edward would make us laugh as always: my wife suggested watching Top Gear one day and he quickly replied: ‘where am I going to get an hour from? I’m busy here.’
In stark contrast to Christmas Day, Edward started to decline on 26th December and by early January, he wasn’t able to talk. The only way he could communicate was by squeezing our hands once or twice for ‘yes’ or ‘no’. By 4th January, the hospice stopped feeding him as his muscles were so weak he couldn’t swallow. Feeza and my mum had to return home, as Edward was adamant he didn’t want them to see him when he was in such decline, but I stayed in Germany and Edward’s childhood friend Dougal travelled over to see him.
On 6th January, Edward was even weaker, but Dougal and I spent the day by his bedside up until 8pm when visiting hours ended. At 4am the next day, I had the phone call I had been dreading for months: my brother had died.
We took Edward’s body back home to Norwich for his funeral and I couldn’t help but regret not getting him back while he was still alive. Home would have been a much nicer place for him to spend his last few weeks and part of me thinks that Edward regretted not going back too.
One of Edward’s last requests was for a fundraising match to be organised for Brain Tumour Research at Norwich City Football Club. He was a fan of the club and loved going to the ground with his friends to watch the Canaries play. We held the match in May and have raised over £5,000 so far and I hope we can continue to raise more in his memory.
Most of all, I hope that Edward’s story will resonate with others and highlight just how cruel and unfair brain tumours are. The only way we can stop this happening to others is through research but before that can happen, we need to raise awareness and help gain more funding for scientists researching a cure.
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.
If you have been inspired by Edward’s story, you may like to make a donation via https://www.justgiving.com/fundraising/edwardandrewmorrison or leave a gift in your Will via www.braintumourresearch.org/legacy
Together we will find a cure.
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