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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Danny Griffiths

Danny Griffiths, from Bingham in Nottinghamshire, was 57 when he died from a brain tumour he bravely fought for two-and-a-half years. Danny was happily married to Andrea and a proud father to Olivia, 22. Danny’s tumour was inoperable but he underwent palliative chemotherapy to try to prolong his life. He spent his final weeks being cared for at home by Andrea and Olivia and tragically died in December 2020, having contracted COVID-19 just days before. Olivia, who has just qualified as a nurse, is now keen to raise awareness of the disease, which killed her dad and tore her family apart. 

Olivia tells Danny’s story…

In many ways, it feels like the grieving process started before Dad died. When we were told in November 2020 that his tumour had spread and that he had no treatment options left, that’s when I began to grieve, as I knew we were on borrowed time.

Dad was born in Middlesbrough in 1963. He became a Leeds United fan at the age of 10 and went on to be a life-long supporter of the club. He moved to Nottinghamshire in his early twenties and that’s where he met my mum on a computer training course. They got married in October 1992 and had me in May 1998. My dad worked as a special educational needs (SEN) officer for most of his career. He was very good at his job but it was stressful and all-encompassing. 

I left home to study nursing at university in Manchester in 2017. Having spent a lot of time in-and-out of hospital as a child, I was inspired to become a paediatric nurse. In the summer of 2018, when I was living away at uni, Mum and Dad had been to a World Cup party and were walking home when my mum noticed that Dad’s left leg was dragging behind him. They’d had a few drinks, so she wasn’t sure if it was that or something else but she definitely noticed that it was unusual. Not long after that, one really hot summer’s day, Dad came home from work complaining of numbness in his left side. Because of the temperature, he thought he was dehydrated but Mum noticed it was the same side he’d been dragging his leg and she encouraged him to ring the GP. It was a Wednesday and luckily, they had an appointment that evening, so he was seen really quickly. The GP must have had a hunch that something wasn’t at all right and he referred Dad for an MRI scan at Queen’s Medical Centre (QMC) in Nottingham the very next day. On Thursday he had the MRI and by the Friday he received the results.

 “We were devastated to learn that the scan had picked up a tumour in his brain. Dad was referred to the oncology department at Nottingham City Hospital and they sent him for a biopsy. Everything happened very quickly.”

Dad had the biopsy, which unfortunately left him with irreversible left-side paralysis. A couple of days later we were being given more bad news. The tumour was a grade 4 glioblastoma multiforme (GBM). Up to this point, I knew very little about brain tumours but I soon learned that the average survival time for Dad’s tumour-type is devastatingly short – just 12-18 months. I vividly remember sitting in the consultation room in hospital, after being given the news, and we all broke down in tears. I had never seen my dad cry before then. We were gutted. We knew there was a chance it could be high-grade but we were desperately hoping that it wouldn’t be. It felt like the worst news ever.

“The brain tumour nurse specialist said there wasn’t much that could be done and that it was a case of prolonging the time he had left, while not affecting his quality of life through too many harsh treatments.”

At first, they thought the paralysis was caused by swelling following the biopsy and he was given steroids but he never fully regained movement. He did, however, learn to deal with it and although he struggled to walk long distances, he adopted a new way of walking, so he wasn’t confined to a wheelchair all the time.

Dad was a really keen cyclist and one of the hardest things he had to deal with was not being able to get out on his bike again. Before his diagnosis, he would go on 40-mile bike rides every week. He was really fit. His other passion was real ale, so the rides would usually involve a stop-off at a pub. He loved it! Luckily, he was able to continue enjoying some of his other interests, including watching football and cricket and listening to music (Johnny Cash being his favourite). He carried on following his beloved Leeds United right until the end of his illness.

Dad was put on a course of chemotherapy, taken in tablet form. Three months into his treatment he had an MRI scan to check what effect it was having and unfortunately the results showed that the tumour had grown slightly. They put him on a stronger dose and another scan revealed that, thankfully, the drugs were working and the tumour had reduced in size quite significantly. He didn’t suffer too many side effects either, other than fatigue.

He continued having regular scans to monitor the tumour and the results remained stable for 18 months. He had to give up work and my mum took early retirement too, to look after him. He was supported with occupational therapy and physio at home and he adapted well to his new way of life, in spite of the devastating nature of his diagnosis. He still went to the pub with his friends and some of his mates took him to see the cricket.

“For Dad it was always about enjoying a good quality of life. He never wanted to be defined by his brain tumour.” 

When the COVID-19 pandemic hit the UK in March 2020 and the country was locked down, Dad’s mental condition began to deteriorate. He was affected by not being able to go out and make the most of the time he had left. What it did mean, however, is that we got to enjoy some really precious time together as a family. I have suffered from ulcerative colitis since childhood and take immunosuppressants, which means I am at an increased risk of complications from the coronavirus, if I were to be infected. I was advised to shield and so, reluctantly, I had to postpone my final placement on my nursing course. I decided to move home to Nottinghamshire to spend lockdown with Mum and Dad.

With hindsight, it turned out to be a real blessing that I was able to spend several months at home. Although I was frustrated that I’d had to put my studies on hold, spending six months with my dad in what turned out to be the final year of his life, was really special. We spent a lot of time in the garden enjoying the good weather, we played with Mum and Dad’s new dog, Ludo (a cockapoo they bought after Dad’s diagnosis) and we watched a lot of sport. Seeing Leeds United promoted from the Championship back into the Premier League was a particular highlight! We even managed to redecorate some of the house. We’ve always been a tight-knit family but over this time we became even closer.

Once the COVID-19 restrictions began to be lifted, however, Dad struggled to go out. His arm had started to make involuntary movements and he worried about what people would think of his appearance.

 “Mum and I tried various different treatments but nothing seemed to work. Although he wasn’t particularly open about his mental health, it was clear that it was being negatively impacted.”

I went back to university in September, to finish my final nursing placement. Mum rang me one day in October and said Dad’s condition was visibly worsening. He kept falling over and was finding it increasingly difficult to carry out his normal tasks. Dad’s jobs were always doing the vacuuming and the dishwasher. He’d stopped being able to do these things. Usually, he would always make sure he got up, got showered and dressed every single morning but that routine had also completely stopped. Mum was having to pick him up off the floor, which she found really hard. For a while, Dad was in denial about his deterioration but then eventually he admitted to Mum that he was feeling different. At the end of October, Mum rang his specialist and relayed everything that had been happening. He went into hospital for observations at the beginning of November. As part of that monitoring, he had an MRI scan, which devastatingly revealed that the tumour had spread to the other side of his brain.

“Because of the COVID-19 restrictions at the hospital, Dad was on his own when he received the news that things had progressed.”

The doctors said we could try another course of radiotherapy but that it might not work and could affect his disability even more. Instead, a care package was put in place. Dad never wanted to die in hospital or in a hospice, so, with the support of the palliative care team, he was able to come home on 12 November. Meanwhile, as I was reaching the end of my nursing course, I was more determined than ever to complete my studies and graduate as a nurse. I spent the last three weeks going back and forth between Manchester and home. It was exhausting but it didn’t matter at the time, I just wanted to finish my degree and spend as much time with Dad as possible. I wanted Dad to see me graduate and become a nurse.

By December, Dad began to deteriorate very quickly. On 9 December his temperature was high and he developed a continuous cough. He was tested for COVID and the results came back as positive.

“He never really recovered from that and almost slipped into a coma. He passed away a week later, on 21 December.”

Although we knew he didn’t have long left, the COVID definitely speeded things up. In a way, I’m glad it did, as he had spent the last two weeks of his life in so much pain. It was really horrible to see. In the end we took comfort from the fact that he was no longer suffering and he was finally in peace. Having said that, it’s still a huge shock. I was really close to my dad and I miss him terribly. But I’m gratefully that of the two-and-a-half years he lived with a brain tumour, he only really spent around two months being really poorly.  

Dad’s funeral will be on 15 January 2021. Ideally, we wanted it to be sooner but with the backlog of deaths over Christmas, there was a delay. Before Dad died, I spoke to him a little bit about his dying wishes and about planning his funeral. Maybe that’s because of my professional background – I wanted to make sure he was happy with everything. He told us who he’d want to be there and, knowing he was going to die in COVID times, that obviously meant a restricted number of mourners. He picked four pieces of music and decided he would like to be cremated. His ashes will be scattered in Marbella, a place he loved to visit with Mum, and at Elland Road, where Dad and I enjoyed many happy times together. Instead of a headstone, we will plant a tree to remember him by and every year on his birthday, 17 September, Mum and I will host a memorial party at our house. It will be an opportunity for a wider group of friends and family to come together to remember him, as the funeral numbers are restricted to 30. The other reason for having a celebration at home is that Dad had a lot of ale left that needs drinking!

 “Having never had any experience of cancer in the family, I suppose I was naïve in thinking it would never happen to us.”

One of my placements was on a children’s oncology ward and I remember meeting a patient as young as three, who was suffering from a brain tumour. It’s a truly awful disease. I initially went into nursing, motivated by own experiences with the health service from childhood but my experience with Dad has definitely given me more impetus to follow my dream career and one day I hope to specialise in oncology. It’s a challenging profession but so rewarding. I was so delighted to finish my course in time to tell Dad that I’d been signed off as a nurse. He and Mum have always been so supportive and they were both so proud to see me achieve my goal. On 18 January 2021, I start my first paid role as a neonatal nurse in an intensive care unit at a hospital in Manchester. I want to continue to make Dad proud.

Olivia Griffiths
January 2021

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 Danny’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy Together we will find a cure.

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