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In Our Hearts Stories

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

Jody McNeilly

Jody McNeilly, from Sevenoaks, Kent, started feeling unwell after bumping his head on a ride at Disneyland Florida in August 2019. He began suffering from anxiety, nausea, headaches and fatigue, and became increasingly forgetful and confused. He also lost his peripheral vision and was unable to drive. The father-of-three’s symptoms led to him being diagnosed with a glioblastoma (GBM) in January 2020. He had multiple surgeries, to debulk the tumour and to replace a temporary shunt with a permanent one, and radiotherapy, but died 13 months later, at the age of 44.

Here is Jody’s story, as told by his wife Lisa …

In August 2019, Jody and I took our three children to Disneyland Florida to celebrate my 40th birthday with friends. All was great until the dads in our group took the kids on the Expedition Everest ride whilst it was quiet one evening. I remember Jody coming back saying his head hurt as the ride had stopped briefly midway, and when it re-started he had banged his head. The others said the same, but they were fine.

Jody’s surgeon later told us banging his head wouldn’t have caused his tumour but may have aggravated it if it was already there. What we do know is that nothing was the same after that. The next day, Jody started to suffer with nausea due to anxiety and he left his phone on a ride, which wasn’t like him. He thought it was because of the busy Disney schedule I had organised!

“Within 24 hours he was suffering with anxiety and complaining of feeling sick, and just five months later he didn’t know what day it was.”

When we came home, Jody’s anxiety and nausea continued, and it would come on all of a sudden. I told him to book a doctor’s appointment to ensure there wasn’t a physical explanation for it. He was prescribed anti-sickness tablets, but they didn’t work. We began to think Jody’s symptoms were being caused by stress. He had recently been promoted at work and was responsible for more than 100 people, and we were in the middle of a house extension.

As it continued, we went back to the doctors and asked for blood tests, however these came back clear. I started to think Jody was having a breakdown and we and his doctor began going down the mental health route. Jody even joined a gym to try and help. We were both puzzled about why he was feeling so anxious over such trivial things. I googled his symptoms, as did he, and sent him the links I found.

“Brain tumour was listed, but it never crossed my mind that could be the cause as Jody didn’t have a permanent headache and wasn’t constantly sick.”

At the end of January 2020, he was really struggling and I told him I thought it may help if he spent a week at his parents’ house focusing on himself. He couldn’t drive as his peripheral vision was impaired, so his dad came and picked him up. He still went to work, but two days later he called saying he was going to come home that night as he was missing us.

“Two hours later I got a call saying he was leaving work early as his colleagues didn’t think he looked well and he wasn’t walking properly.”

He was confused and got on the wrong train, but, luckily, I managed to meet him at London Bridge to take him home and onto the doctor. Jody was checked for signs of a stroke but after that was ruled out, we were told counselling would be arranged. I asked for a CT scan and was told to expect an appointment letter from the hospital in a couple of weeks’ time.

I took Jody home and said we’d go to A&E at Tunbridge Wells Hospital the next day if he didn’t improve, which is what we did. When we arrived, he was sick in the car park and had to lay down as soon as we got inside. We were seen within 15 minutes; I relayed his symptoms and was told immediately that he wasn’t suffering from stress and I had done the right thing by bringing him in.

Jody was diagnosed with a brain tumour, a glioblastoma (GBM), and transferred to King’s College Hospital, London, that evening. I realise now the hiccups he was getting for two weeks before were a result of his tumour, but we had no idea at the time. Unfortunately, before a planned surgery could take place, Jody suffered a seizure due to hydrocephalus, a build-up of fluid on his brain, and had to have emergency surgery.

 “He was never the same after that, it felt like we lost him then.”

Jody was in intensive care three times that week after having further surgeries to debulk his tumour by 10% and to replace a temporary cerebral shunt with a permanent one. He had to learn to walk and talk again and was in a wheelchair for a couple of months. He wasn’t well enough for chemotherapy, and it was touch and go whether he would be able to have radiotherapy, but he did, at Guy’s Hospital, London, where he was transferred.

“We explained the treatment wouldn’t cure him but could give him extra time, 12 months instead of six, and he said he wanted to do it to have more time with the family.”

Jody came home mid-April. He called me from the ambulance as he didn’t know our address. He could only remember where our old house was, which we hadn’t lived in for three years. He didn’t recognise our current one and had no connection to it, but he was pleased to be with us as he loved his family and hated being apart from us. This all took place during COVID-19, so we couldn’t have any visitors besides the carers who came three times a day. They were fantastic and a massive support to me and the kids. We remain in touch to this day.

In the middle of June, Jody deteriorated and went back into hospital. We were advised then to move him to a nursing home because his needs were too great to be able to continue caring for him at home. We were lucky enough to find a lovely one within a five-minute walk of our house and Jody thought he was at home, which gave us some comfort.

“Looking at photos from before Jody’s diagnosis, it’s obvious his sparkle had gone, I can see the difference in his eyes and smile.”

I also have one of him with Tigger at Disneyland in which his left eye is visibly smaller, but hindsight is a great thing.

“This disease is so cruel and affects people in so many ways.”

For Jody, it was similar to dementia as he couldn’t remember what was wrong with him. We stopped mentioning it because each time we did was like the first time he’d heard it. He’d be devastated and then would forget 15 minutes later, which was too upsetting for us all.

Sadly, Jody passed away in the nursing home with me and his mum by his side in February 2021. He loved his life and was an amazing husband and father. We were the perfect couple and met in our early twenties.

“We were a very close family and we all cherish the time we had with him.”

Jody’s memory lives on in his three children. He also has two awards named after him that are handed out each year. His old firm, Thales, gives The Jody McNeilly Award Apprentice of the Year, which recognises what a great advocate Jody was for its apprenticeship programme. Sevenoaks Town Football Club, where Jody coached our elder son’s under-10s team, gives The Jody McNeilly Award to a youth coach who is a great role model and shows dedication, enthusiasm and passion. Coincidentally, the Sevenoaks Town FC Awards Day was held on Saturday 10 June, the same day my daughter and I did a skydive in aid of Brain Tumour Research. Jody would have been honoured.

“We miss him terribly.”

Lisa McNeilly
June 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.

Brain Tumour Research is determined to change this.

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