“You can’t change the past – it’s already happened. So why dwell on it? Instead, you move forward, live your life, and make the most of every moment. This charity is helping me do just that.”
These powerful words come from Alison Byrne-Paul, who is facing life with a serious brain tumour. For the past two years, our team at Jubilee House, our centre in Cumbria, has been a source of strength and support for her.
Married to Cheshire firefighter Steve, Alison is now bravely sharing her journey in the hope that other partners of Fire and Rescue Service personnel will feel empowered to seek help when they need it.
“In 2022 I started to notice a bit of an issue with my right hand,” says Alison. “I couldn’t write properly, but I thought it was from using computers a lot. Around the same time, I noticed my right leg and foot was scuffing on the floor. I didn’t really put two and two together at the time.”
Alison began seeing two physios for each of the issues, who fortunately worked for the same company. As they began to notice patterns, they were able to link the two issues together.
“They both advised that I go to see a neurologist… I assumed it was a trapped nerve or something to be honest,” Alison adds. “They did tests and it came back that I had a severe tumour. When you think it’s just a trapped nerve and then you’re told you have a large brain tumour, it’s a big shock.”
Alison was referred to specialists and found out in January 2023 that it was the highest grade brain tumour – glioblastoma.
“They initially told me I had a month to live, because it was spreading quickly. It took me a while to process that to be honest,” Alison recalls.
“At that point, Steve and I decided to get married. We’d only been together about seven months, but it felt right. We got married that February and during that time, I started radiotherapy… they told me it would buy me some time, but I may not get to the end of it.
“I defied that and did six weeks, Monday to Friday, and when I finished that I went on to chemotherapy. I did two rounds of that and it made me really ill, but it meant they could stabilise the tumour.”
Around this time, Steve – who knew about the support we offer – got in touch to see if we could offer him any support as he came to terms with his wife’s diagnosis. It’s then that he discovered we could also help her.
“I was invited to Jubilee House for a rehabilitation retreat, with Steve,” says Alison. “It was so nice to get away from home and the near-constant hospital appointments to be honest…
“Because I have weakness round my right side, I started falling over a lot. I had multiple falls and eventually discovered I’d fractured my spine, the pain was awful. The visit to Jubilee House couldn’t have come at a better time. That was towards the end of 2023.
“We didn’t quite know what to expect, but I was amazed that the charity funded the cost of accommodation and all meals for five days, including for my husband too.
“I’ve always been a keen swimmer but didn’t think I’d ever be able to do it again. With the team’s help, they have taught me how to swim again, as well as giving me exercises to use at home. I now regularly go swimming at home and I genuinely can’t thank them enough. It’s been truly life-changing… a game-changer for me, mentally too. It’s just been incredible.”
Alison has since been back to Jubilee House and, with the help of our nursing team as well as our physiotherapists and exercise therapists, she’s continued to build up her strength and find ways of coping with her mobility challenges.
“All of the staff are so friendly and they are like family to me now,” she adds. “It’s also a break for Steve or my mum – who has also been with me – and they trust the team completely, so they can relax and have some time for themselves while there.”
Alison’s tumour is currently stable and she’s focused on enjoying her life.
“Move forward, live your life, and make the most of every moment”
Alison Byrne-Paul
“Nobody knows when they’re going to die, so I’m going off what I feel,” she says. “I don’t feel any worse than I did then, if anything I feel better thanks to the swimming and strength exercises, so I’m carrying on living my life.
“You can’t change the past – it’s already happened. So why dwell on it? Instead, you move forward, live your life, and make the most of every moment. This charity is helping me do just that.
“Don’t get me wrong, I have days where I think, ‘why did this happen to me’, but I try to get on with it in those moments. There’s no point wasting time and being stuck in the past.”
As a thank you for our support, Alison’s mum organised a sponsored swim in aid of us and said: “Amazing staff and an amazing place! They feel like extended family to us. I just want to give something back to this amazing place and charity. We wouldn’t be where we are now without them.”
If you feel you’d benefit from our health and wellbeing support, you can call our Support Line on 0800 389 8820, make an enquiry online or visit the ‘Access Support’ tab in My Fire Fighters Charity.