Jason’s story

Shared by Jason’s wife, Rosalie.

I first met Jason at work and quickly knew he was the one. We moved in together in January 2002 and got married in 2006. Jason became a wonderful stepfather to my two children; my son Terry, who lives nearby with his family, and my daughter Samantha, who lives in Australia with her family.

On 16 June 2018 we were celebrating our 12-year wedding anniversary, so we went for a meal out and had a lovely evening together. The following day, we needed to get some shopping in. I remember Jason was excited to take out his car as he’d recently purchased a Jaguar – the car of his dreams! We were walking round the shop when Jason’s face started to go really red – he told me he wasn’t feeling too good and I could tell he wasn’t himself. We were rushing to get home and went to the till to pay. This is when Jason started speaking to me but I couldn’t understand him – he wasn’t making sense. It was really frightening and we thought he might be having a stroke. The shop staff helped us to call an ambulance.

When they arrived, Jason was himself again, but they said they would need to take him to the John Radcliffe Hospital as they weren’t sure whether he’d had a stroke or not.

Jason was taken to the John Radcliffe on blue lights and I drove the car home for the first time. I phoned my son Terry to meet me at home and we travelled to the John Radcliffe together where we met Jason’s mum. In this short time, Jason had suffered multiple seizures and they told us he would need a brain scan. It was 10pm by the time they called us in to say they had found a lump in his brain, which looked like a tumour.

As you can imagine this was a total shock to us all and it was really hard to take the news in. All Jason wanted was to go home – the team asked him to come back in the morning for more tests, but agreed that he could go home with anti-seizure medication.

We arrived at the John Radcliffe the next day for an MRI scan. Following the scan, we knew the news was going to be bad because we were assigned Macmillan nurses, who were really kind and lovely. One of the surgeons, Professor Smith*, told us that the tumour was likely grade three or four and it wasn’t as small as originally thought. He told Jason he would perform awake surgery and remove as much as he could. Jason was hopeful and asked if that would be the end of it, but Professor Smith said that sadly the tumour would return at some point.

The past 24 hours had been a total whirlwind and we felt awful. It just didn’t feel real. I phoned Jason’s mum to tell her the news which was really hard.

Jason was booked in for his first surgery and waited for the date to approach. On the day, he got prepped for surgery and ended up being the last person in the waiting room. Professor Smith came into the room and said he was really sorry, but he couldn’t perform the operation as there weren’t enough beds. This felt devastating and I was getting really worried about Jason as his speech was slurring more and more. I ran after Professor Smith and begged him for help. He promised he would get Jason booked in for his surgery as soon as possible.

A week later and Jason was having awake surgery, which took around six hours. The recovery went well and he was allowed to go home the next day. Professor Smith said he was pleased with how it had gone and he had managed to remove everything he could see.

Life had to return to some type of normal and I went back to work. Jason was still going back and forth to the John Radcliffe for tests, when a different consultant shocked Jason and said that he would likely only have 12-14 months left to live. I felt awful that I wasn’t there with him.

Jason was put on a course of radiation and chemotherapy but was about halfway through the radiation when the wound on his head became infected. He had to be admitted for surgery to remove the cap on his brain as the bone was infected. Sadly, this didn’t help, and the infection remained. He had a third surgery but this didn’t fix the issue either. The fourth operation was finally a success and he could carry on with the chemotherapy.

Life felt good again as Jason was having regular MRIs which were showing that the tumour was gone. We knew we had to make the most of every moment so in 2019, we planned a trip of a lifetime to visit my daughter in Australia. We went for a month and it was absolutely marvellous to go away and spend quality time together. We got back to the UK at the start of 2020, just before the pandemic hit.

This was when everything went downhill. At one of Jason’s three-monthly MRI scans it showed a regrowth – the tumour was back and Jason was put on another course of chemotherapy. Just ahead of a fifth surgery, the MRI came back and said the tumour was shrinking, however the chemotherapy had been so stop-start that eventually it stopped working. There was nothing they could do and the only option now was radiotherapy.

In early 2022 Jason was put on his final course of radiation, but we’re not sure whether this helped or hindered him. The seizures slowly started again and it became clear that he would need palliative care. The Macmillan nurses handed us over to Sobell House Hospice.

I already knew Sobell House as they cared for my sister and my niece used to work there – I knew I would be in safe hands with them.

Jason wanted to be at home and the community team gave us all of the support and care we needed to fulfil Jason’s wish and allow us to spend every minute possible together. Lots of equipment arrived for Jason – a walker, hoist, frame, and bed – to ensure he could stay at home and remain a part of family life.

Cancer is a wicked illness and gradually Jason’s mobility went and he became bedbound. We had carers four times a day and for five nights a week they would sit with him all night. On the two nights they didn’t, I slept on the sofa right next to him.

Sobell House were there through it all giving us advice and support at all hours – I couldn’t have managed without them. Whenever we needed something, they were there by our sides every single step of the way.

Jason died on 27 March 2023. He was only 50 years old. Jason’s mum and brother and Terry and I were all with him when he died.

At Jason’s funeral we asked his friends and family to make donations to Sobell House and Macmillan so that they could continue to provide their wonderful care. Jason’s ashes are now with me at home and we will be buried together when the time comes.

One thing I find remarkable is that Jason kept his sense of humour throughout his illness. He took one day at a time and continued to plan for the future. About 14 months after Jason was told he would have 14 months to live, the whole family went out to dinner to celebrate him beating his ‘death day’! We even moved house about a year into his illness as Jason wanted me to be able to cope with a smaller place when he was gone. He was halfway through redesigning our pond when he died.

It’s really hard for me to adjust to life without Jason – I’ve lost my best friend, my soulmate, and my rock. But I wonder where I would be now if I hadn’t had the support from Sobell House in Jason’s final year of life – it would have been impossible to cope. I know that Jason appreciated their help and we couldn’t have asked for more.

*Name changed for confidentiality.

Thank you so much to Rosalie for kindly sharing her family’s experience of Sobell House.

If your loved one was cared for by our team and you would be comfortable to share your story with our supporters, please fill out our story form.