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In Our Hearts Stories

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

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Historically just 1% of the national spend on cancer research 
has been allocated to this devastating disease.

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Plymouth University Brain Tumour Research Team

Stuart Neill

For 20-year-old Victoria, the hardest part of losing her Dad was the prospect of spending the rest of her life without him. Stuart Neill, aged 56, fell ill while working in Africa and, after being diagnosed with a type of brain tumour known as a metastatic renal cell carcinoma, sadly never returned home. The father-of-three, who had survived renal cancer in 2013, suffered dreadful complications from his brain surgery in Johannesburg and, tragically, never recovered. Now Victoria’s family are struggling not only with the sudden loss of their Dad but also the financial implications of losing their family’s income.

“The burden of Dad’s death is inconceivable. On top of losing a loving father, we had to sell the family home, belongings and tackle the financial impact of his death. He worked so hard so that mum could stay home and take care of us, however, now there is pressure on Mum to find a job so soon after losing him. We still have to be very careful with money, my brothers and I contribute towards helping us all get by.”


Here is Stuart’s story, as told by his daughter, Victoria…

My Dad and my Mum, Stuart and Kerry, were the most loving parents. Their relationship began when Dad accidentally trod on Mum’s foot in the bar ‘Morrison’s’ on Morrison Street in their hometown of Edinburgh in 1986. Nevertheless, they hit it off and married in August 1989. Though it was a unique way of getting a girl’s attention, it worked and, in 1992, my eldest brother, Lewis, was born and they later went on to have Rian in 1996, and me the following year.

Dad was a healthy man and, though he indulged in coffee and cake, he never drank or smoked, and kept very active. Dad was into sports, especially football, and was a massive fan of Hearts of Midlothian Football Club. When he was younger, he played for his school team and was even offered trials at Tottenham Hotspur. When I was a child he’d take my family to football matches and, although I wasn’t really keen on the game myself, it was lovely to spend time with him. He became passionate about every sport we wanted to participate in. He travelled across Scotland and Europe to support my brothers in their basketball matches and he also watched most of my horse-riding lessons. In later years, he enjoyed jogging and golf.

From an early age, Dad had instilled a great work ethic in us. He was a dedicated man who, despite leaving school with only O-Levels, attended college and completed an apprenticeship in mechanical and production engineering. After that, he pursued a successful career in engineering with companies including Total S.A and his own company Neill Subsea Services. He was always such a practical man and was very intelligent, if he didn’t know how to do something he would research and learn how to do it. Through his own wisdom, he would listen and offer us loving advice. He taught us to never give up, to work hard in everything we do, to take risks and to strive for the best in life. He always made sure his family was his first priority. There are so many memories he made with Mum during their 29 years of marriage, and endless memories he made with us children too. Never afraid to step out of his comfort zone, he travelled around with his job, to Texas, Spain, France, Angola and countless other countries.

This happy family life was turned upside down in 2013, when Dad was diagnosed with a grade 3 renal carcinoma. He was admitted to the Western General Hospital in Edinburgh and had surgery to remove his kidney and the vein the cancer had spread to. Never one to rest, a week after surgery Dad was back to work and went on to get the all clear in November 2017.

Life moved on and we assumed we’d seen the back of Dad’s health scares. I went off to university in the footsteps of my brothers. Dad would call us every night when he was away with work and he’d countdown the days on his calendar till he could see us again. I can’t imagine how lonely it must have been for him to work in a foreign country without being able to see us. It was a huge sacrifice he made.

However, in December 2017, our lives were shattered once again when Dad fell ill while working in the Democratic Republic of Congo (DRC). He was struggling with headaches, dizziness and forgetfulness but was determined to keep working until the end of his rotation. On the 28th December, just three days before he was scheduled to return home, he collapsed at work and had a CT scan at a local hospital, which revealed a lesion on the third ventricle of his brain.

Dad was then airlifted to Milpark Hospital in Johannesburg, South Africa, where he was initially diagnosed with a cyst in his brain. Mum received a phone call from the doctors and informed us all and, although we were worried, Dad ensured us that he would be okay. On the 31st December, Dad was supposed to fly home for treatment in Edinburgh, but as this could have caused a catastrophic bleed in his brain, doctors prevented him from flying.

As the bells rang in the new year, I tried phoning him but he didn’t answer. I messaged him wishing him a Happy New Year and a few hours later, he replied saying "Happy New Year darling, love you." That was to be the last text I ever received from him.

Dad was scheduled to have surgery on the 3rd January and, although it was stressful to plan who would be flying over, due to the distance and cost, Mum and Lewis flew out to be with him. During surgery, the doctors realised he in fact had a tumour, deep in the centre of his brain, and, as a result, he was in theatre for 13 hours. All of the tumour was removed and by the next day Dad was sitting up talking to Mum and Lewis. The doctors were positive he would fully recover and be flying home by the end of January. We were all relieved and when Dad woke up and asked, "Did you tape the Hearts vs Hibs game?", we were hopeful that he would pull through.

Dad had ups and downs over the next few days, catching infections and other illnesses, but fought to recover. The nurses and surgeons told our family that they had never seen someone so strong and so determined. Apart from when he was sedated to have his shunt replacement, he was conscious and kept the nurses laughing by sharing our family stories. Being in Johannesburg was hard for my mum and Lewis, as they had to deal with additional pressures such as traveling through gang-ridden areas and even faced people on the streets with guns. About 16 days on from his surgery, Dad began to have complications as the intracranial pressure in his head rose to a critical level. Rian and I recorded voice messages and sent them to Mum to play to Dad and he squeezed her hand when they were played. We then flew out to be with him and, although Mum had warned us that Dad’s condition was horrific, I still broke down in tears every time I saw him in ICU. He was on life support, his eyes were closed and he couldn’t move. I was so worried that he didn’t know that Rian and I were there by his bed. I was terrified that he was gone forever, without knowing that we loved him. Over one week, he deteriorated further.

As we saw Dad gradually losing strength, the doctors performed a brainstem test to determine whether the vital centres in his brain were still functioning. He was not responding. Meanwhile, my family and I waited in the corridors hoping for some good news. It was there that I smelt the distinct natural scent of my Dad. Rian had told me afterwards he smelt this too and I feel that this was Dad’s way of saying goodbye, and that he knew we had been there. He was pronounced brainstem dead and I broke into tears and struggled to breathe. We decided as a family to switch off his life support on the 28th January. We sat by his bed, along with the devastated nurses and his heartbroken surgeon, whilst Dad faded away. I found out afterwards that his tumour was a metastatic renal cell carcinoma and that he had been the fifth person in all-medical records to have his specific subtype of tumour. Again, I think this shows that he had an extremely tough battle but through all odds he wanted to keep fighting for us.

After his death, it took us about two weeks to be able to fly home, due to all the paperwork we had to fill in. When we finally got home, we were faced with an empty house and the upsetting task of opening Christmas presents we had prepared to give Dad on his return. Coming home to the decorations he and Mum had put so much effort into putting up was extremely upsetting. He never liked to make a fuss of himself over Christmas but instead he made the festivities all about us. He would dance with joy while preparing a meal knowing that all five of us would be sitting down to eat, talk and to be together.

Dad’s funeral was a fitting tribute to his life and I was able to meet the colleagues that he had worked with in Africa, who spoke very fondly of him. My mum, brothers and I pushed the trolley with Dad’s coffin on it, to a version of one of his favourite songs ‘Parisienne Walkways’ by Thin Lizzy. It was very emotional but something we all felt we had to do, we needed to be there until the end. Afterwards, we did one of our special family hugs that we always did before Dad left for work, and we placed roses on his coffin. The wake took place at Hearts of Midlothian Football Club, which evoked so many memories of Dad taking us there when we were younger.

The burden of Dad’s death was inconceivable. On top of losing a loving father, there was a huge financial impact after his death. We had to sell the family home and Mum was under pressure to find a job straight away. We still have to be very careful with money and we’re all helping each other to get by.

Emotionally, things are extremely tough. I tried to get through the last semester of my second year at university but I didn’t receive enough pastoral support, so I transferred from the University of Edinburgh to Heriot-Watt University. While I found returning to university very hard, it gave Rian something to focus on. Amazingly, he graduated with a first-class degree, despite everything he went through. I think he did it for himself, but also to make Dad proud. It was really tough without him at the graduation as the last time we had celebrated a graduation it was Lewis’ and Dad had been there for it all. Now, there will be an empty space in our graduation pictures without him.

Truthfully, I feel like I haven’t seen Dad since November – before he left for work in DRC, when he was conscious. I have counselling but I’m still in so much shock from his death, especially as his latest scan in November 2017 had come back all clear. It is unfair that he was taken from us so suddenly and I sometimes get flashbacks from the traumatic days when he was in hospital.

At the moment, I’m taking each day as it comes. The most challenging part for me is knowing that Dad won’t be there for important dates, like my graduation, our weddings, meeting his grandkids or even to retire and live out his days with Mum. Mum says she sees so much of Dad in us and I hope he will still, in some way, be with me. I also know Dad wouldn’t want me to give up, it is so hard for us to think about the future but he would want us to live our lives to the full and to pursue our ambitions. Although we’ve experienced a lot of loss as a family before, this didn’t prepare us for losing Dad, which was unbearable.

Understandably, Mum is devastated. For her, it is like losing both a part of herself and her future. I can’t imagine how that must feel. She also has counselling and my brothers and I are supporting her and I’m lucky to be part of such a tight-knit family. Mum recently accepted a job in a nursery, so this should help us financially and will be great for her, as she has always been very maternal. Both my brothers and I want to continue to help Mum as she gets older and we want her to be able to live a comfortable life without worrying about finances.

I know that even though Dad is no longer with us, his legacy lives on. After he died, his colleagues in Africa gifted us with a statue of five people hugging in a ring, representing the bond between my family. It was also remarkable, as it resembled our family hug. Another fitting tribute was that the Subsea Christmas tree, the biggest oil project in the DRC, was installed in memory of my father. I think this shows how respected my Dad was gives him credit for all that he has achieved in just 56 years. Most importantly, Dad’s legacy will live on through my brothers and I, who are so determined to make him proud. In many ways, we are very much like Dad, gifted at maths and mechanics, courageous and driven to live a meaningful life.

I’m also passionate about raising awareness for the importance of routine scans, of both the head and body, after someone has survived an aggressive cancer. After his renal cancer diagnosis, Dad had full body scans, as required by the NHS, and these came up clear each time. However, these did not include any scans of the head. Although it may have not changed the outcome, it may have caught Dad’s tumour earlier and it may have given us some more hope. I hope, if head scans become more frequent, it will help others survive the dreadful disease that took my dad’s life so suddenly.

Victoria Neill
August 2018

 

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 Stuart’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.

The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.

Stuart Neill

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