Neil’s mantra was very much ‘work hard play hard’ – something which he carried with him throughout his adult life. His tenacity saw him rise through the ranks in both of his chosen careers but never at the expense of his family or friends. He liked nothing better than a get together in the local pub on a Friday night for a laugh and a few drinks. This is Neil’s story.
Neil retired on 31 July 2021. After serving 26 years in the Royal Air Force followed by 18 years with the NHS, this was going to be the beginning of the next chapter of our lives. Throughout his life, Neil liked to keep himself fit and was rarely ill so we were really looking forward to a good few years of taking it easy and embarking on more travels, something which we both loved.
Throughout his life, Neil had always done a lot for charity and the community as a whole. He had been a volunteer Instructor for the Vulcans Swimming Club 2-3 times per week for over 20 years as well as being an active member of the local Lions Club. In June 2021 we had joined a group of friends in walking coast-to-coast from Tynemouth to Bowness for various charities.
Following our son’s wedding in August 2021 we were on holiday with two other couples in Barbados. Whilst there he literally woke up one morning and complained that his peripheral vision was impaired on one side. At the time we all joked and said that it must be the number of cocktails he had sampled from the All-Inclusive bar! However, by the time we got home a week or so later, it was no better.
A visit to the Opticians didn’t reveal anything but the Optician said that he would refer Neil to the Ophthalmology Department at our local hospital. In the meantime, we persuaded him to make an appointment to see our GP who subsequently referred him to the Neurology Department at the same hospital.
It was the Neurology Department who contacted him first. They carried out an X-Ray which showed “something” at the back of his brain but they couldn’t tell us any more without further tests so he was admitted. Apart from his impaired vision, Neil was perfectly normal and healthy so although we were worried, we didn’t think that it could be anything too sinister. After all, this only happens to other people, doesn’t it? He then underwent an MRI scan and was referred to QMC at Nottingham where we had to go for the results.
On Monday 11 October 2021 I drove us both over to Nottingham for his appointment. We were both apprehensive but felt certain that whatever was wrong could be put right. Neither of us was prepared for the news that came next. Neil was diagnosed with a Grade 4 Glioblastoma – a particularly aggressive and impossible-to-treat brain tumour with a prognosis of 6 months without treatment and an average of 12-18 months with treatment. Only 5% of patients survive more than 5 years. Basically, he had been handed a death sentence! To say that we were devastated would be an understatement – there had been no other signs and Neil was his normal self in every other respect. How could this be real? I remember walking out of the room and both of us just hung on to each other and sobbed. It was all so unfair. We then had to go home and break the news to our two children over the phone. It was one of the hardest things we have ever had to do.
The one good piece of news we received that day was that as Neil was otherwise fit and healthy, they would be able to offer him the NHS “Gold Standard” service. This meant that they would be able to operate and offer treatment to try and prolong his survival. The operation took place 3 days later on 14 October 2021 where they managed to remove 97% of the tumour – a good result. The next step was a 6-week daily dose of Radiotherapy followed by 6 cycles of oral chemotherapy. Alongside this he was given a myriad of tablets to take – steroids, blood thinners, tablets to protect his stomach lining – the list goes on. Apart from the first day of the first round of chemo Neil sailed through all of it with no real side effects at all. After the third round of chemotherapy, he was given another MRI scan which showed that the tumour had already started to grow back a little.
It was around this time (Mar 2022) that the Opthalmology Department finally sent Neil an appointment– it’s a good job that he’d made contact with the GP or his story could have been very different! As it was, he was still playing golf twice a week and living an almost normal life.
Although the MRI had revealed a slight growth in the tumour, the Consultant said that he wasn’t too worried at this point as there were still other ‘weapons in his armoury’ that could be used.
The next treatment offered was called PCV, a combination of procarbazine, CCNU and vincristine, with the procarbazine and CCNU being given orally and the vincristine administered via a drip. Neil was offered 6 cycles with each cycle lasting about 6 weeks and each preceded with a blood test to ensure that his blood count was at the right level to be able to cope with the drugs. The change in treatment meant a change in Consultant too. It was now June 2022 and we were due to go on holiday to the Maldives with friends and family – a trip which we had booked over a year previously. Neil’s new Consultant gave him the all clear to go with two provisos – the first was to take a letter with her details on so that she could easily be contacted should anything happen and the second was to “wear a hat!” We had an amazing holiday and, on our return, the PCV treatment began.
As with the previous regime, after 3 cycles of PCV Neil had another MRI scan. It was now November 2022, over a year after diagnosis and this time the MRI results were amazing. They showed the tumour had shrunk by a third – we were elated – it was the best early Christmas present we could have wished for.
The next three cycles were authorised and the six- week programme continued. In January 2023 he surprised me by taking me to Mauritius for my 60th birthday – a milestone which he had been determined to get to.
It was a stomach bug which he contracted at Easter 2023 which seemed to be the catalyst for his downward spiral. The cocktail of drugs and chemo were beginning to take their toll both physically and mentally. He had no appetite, lost weight and became confused at times but he wouldn’t give in. He was due to have his final MRI scan after completing the PCV treatment but I think we both knew that things weren’t good at this point. The MRI took place and the Consultant confirmed our fears – the tumour was growing again. The only treatment she could offer now was 6 rounds of Carboplatin – a drug given intravenously which could extend Neil’s life by 12 months if it worked but the list of side-effects was horrendous. We talked about it with the Macmillan nurses and Neil decided to give it a go – he had nothing to lose. It was around this time that Neil fell out of bed one morning and I had to call the Paramedics. They arrived and thought that he may have had a DVT in one of his legs so they took him to hospital for further tests which resulted in him being admitted. He was finally diagnosed with a ruptured Baker’s Cyst behind one knee and following treatment was discharged after a week or so but he was then unable to start the Carboplatin treatment until the infection had gone. To add insult to injury, it was also around this time that he was told that the effects of his medication had made him Diabetic and he would need insulin injections in his stomach twice a day – something which I never thought I would be able to do as I am quite squeamish but it’s amazing how you can step-up when you need to. I was so afraid that I was hurting him, but like the trooper he was, he just took it all in his stride.
Eventually he was able to have his first round of Carboplatin and all seemed to go well. We even went to the pub with friends for a meal in the evening after his treatment but he went to bed that night and didn’t get up all weekend. On the Monday morning I called the Community Team and he was admitted to hospital. It was clear that he had suffered a severe reaction to the Carboplatin. We managed to get Neil out one more time on a Saturday afternoon to see his son sworn in as President of the Lions Club he belonged to. The following few weeks were spent trying to get a care package in place so that he could come home (Neil’s wish) but it all proved too much for him and early on the morning of Sunday 9th July 2023 Neil finally lost his battle for life.
So there you have it. Thank you for reading Neil’s story and the reason why we wanted to organise this Ball – to raise as much money as possible for Brain Tumour Research in the hope that they can find a cure for this awful disease and to prevent others from going through what Neil and his friends and family (and too many others) have endured.
