In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Jay was diagnosed with a glioblastoma (GBM) in October 2011, aged 25 and was given six months to live. Three years after his diagnosis he met Becky and they soon knew they were destined to be together, even though Jay’s future was very uncertain. In the event, the devoted couple had 10 years together, living their lives to the full, and were blessed with two beautiful children, despite Jay being told his treatment would make him infertile.
Jay’s wife Becky tells his story…
When we met at a networking event in July 2014, I already knew about Jay and that he had a brain tumour. In fact, at the time he was about to have a reservoir fitted into his brain to collect fluid which built up in the void created after his first surgery. Jay was well-known in our local community having set up a charity known as Inbetweenears to support young adults diagnosed with brain tumours.
For us both it was pretty much love at first sight, although Jay was worried about me getting involved with someone who had a terminal diagnosis hanging over him.
“However, we couldn’t help the feelings we had for each other and I was adamant that it didn’t matter if I loved him for one day, a year or 10 years, my love was so strong and Jay deserved that love.”
We fitted a lifetime of loving and experiences into the short time we had. We went abroad on holidays together as much as we could, despite all the worry of getting letters from doctors, all the necessary medication, sending letters to the nearest hospital to where we were staying in case Jay had a big seizure and, of course, organising travel insurance.
It felt like us against the world. I went to every appointment with him, supported him through every treatment and through every seizure.
We also did everything a regular young couple would do, like going out for meals and to the cinema.
We had been together for a year, when Jay said he wanted to take me away to the Lake District for my birthday on 30 November. He’d planned to propose to me on the day, but suffered a seizure in the restaurant and we had to leave our meal. A day or two later, we were on the pier in Windermere, when he popped the question. I must have cried for about 15 minutes but the answer was most definitely YES! There was nothing I wanted to do more than marry Jay.
Our wedding took place on 14 November 2015 at Stanley House in Blackburn. It was the most beautiful day with so much love in the room from friends and family, not to mention us! It’s a memory which will always stay deep in my heart.
Jay had been told that in all likelihood he couldn’t have children as his sperm count was practically zero following his brain tumour treatment, so it was a big surprise when we went for our first appointment ahead of IVF to be told that I was already pregnant!
Our miracle baby Teddy was born on 8 January 2017. Jay was absolutely smitten with him and went everywhere with Teddy who was a real Daddy’s boy. Jay doted on us both.
Our life as a happy little family continued, interspersed with Jay having seizures. He would have maybe two a month, but sometimes they would completely floor him for a week and sometimes he ended up in hospital, which could also include aspirations to remove excess fluid.
Every three months, Jay had a scan which would at times indicate that the tumour had grown or reduced. Against this background, he had various different rounds of radiotherapy and chemotherapy as required.
In the autumn of 2019, we were over the moon to find I had conceived naturally again. Orla was born on 15 May 2020 and Jay was overjoyed that he had: “a blue one and a pink one”.
By this time Jay’s treatment had become quite relentless and he often felt extremely fatigued. Having a new-born meant that on top of his feelings of exhaustion as a result of the brain tumour, Jay’s sleep was also being disrupted.
“On 30 June 2021, Jay underwent an awake craniotomy at the Royal Preston Hospital and, because of the COVID pandemic, wasn’t allowed visitors. It was really distressing to have to drop him off at the door and watch him walking in alone to face surgery on his own.”
As the hours ticked by, I kept ringing the hospital to find out how the surgery had gone, only to be told he was still in surgery or later, still in recovery. Three hours into his recovery period, I had a call to say they suspected Jay had suffered a stroke on the operating table but they couldn’t be sure. An hour later, a stroke was confirmed and I learnt that Jay had right-side paralysis and dysphasia. No one knew if he would walk again or would be able to communicate properly.
Jay had walked into the hospital unaided, but then spent nearly seven months in hospital, fighting one infection after another – sometimes in intensive care.
I had to fight to see him and appealed to PALS (the Patient Advice and Liaison Service) for help. Finally, after Jay had been in hospital for three weeks without a visitor, I was allowed to go and see him. From then on, I went in every day while the kids were at school or nursery. I would then leave the hospital to collect the kids, take them home for tea, bath and bed and then return to sit with Jay, often staying until 4am. Jay couldn’t feed himself so I was there to feed him, talk to him and keep him company.
It wasn’t until Jay had been in hospital for six months that he first got to see the children again. It had such a positive effect on him, really spurring him on to want to recover. Just a month later, he was discharged to a rehabilitation centre in Burnley where he worked hard on his mobility and had speech and language therapy.
“Then Jay had a big fall at the centre which prompted another MRI scan. It was a big shock to learn that the tumour had grown back with a vengeance and, worst of all, that nothing more could be done. Within 24 hours Jay was discharged from rehab and we had to adapt our home to accommodate him and also sort carers to help with his personal care.”
The carers we had from Home Instead were absolutely unbelievable and made everything so wonderful for him. They really made such a difficult time bearable.
We tried to keep things as normal as we could so Jay would come upstairs using a chair lift when it was the children’s bath time. And the two of us would go to bed together when he would always hold my hand.
His speech gradually became non-existent and he couldn’t talk to the children. Ever since his stroke he had become quite distant and unable to show his feelings – so unlike Jay.
Towards the end of February 2022, Jay went into our local hospice for some respite care. Sadly he never came home.
Jay was really calm towards the end and his death was very peaceful. He had already told me long before: “I’ve made my peace with death”.
“Throughout all our time together – a lifetime in 10 short years – we tried to live every day as if it could be our last, with a new task, a new idea or new experience, but sadly, towards the end, Jay became too poorly to continue this. Although I know nothing is for ever, I am comforted that we certainly got it right. I have never loved anyone like I loved Jay and I never will do again.”
Jay was such a practical, yet loving man. He left lovely notes everywhere around the house before he went into hospital and made lots of videos explaining how to do technical things. He also made the house really safe for me and our babies. I can’t believe how valiantly he fought.
“Teddy and Orla are helping me carry on. I always knew my life with Jay wouldn’t be for ever and I want our children to know about their amazing daddy. Teddy is the spitting image of Jay and has the same personality – he is inquisitive, scientific, loves cars and building things.”
Soon after Jay passed on 7 March, we had Orla’s second birthday. It was such a tough day and it was extremely difficult having a cake without Daddy – Jay was always the one to bring the birthday cake in.
We go to Daddy’s graveside, which the kids call “Daddy’s garden”, and they show him their certificates, trophies and pictures. They are very comfortable talking to Daddy.
I have to take one day at a time and, as well as support from my family and Jay’s, I have also had great support from the charity WAY Widowed & Young – Bereavement support UK, for those under the age of 50 who have lost a partner.
I am a beauty therapist and have had to reduce my work hours to just school hours, but luckily my clients have been fantastic and so supportive.
“Jay was perfect in every way. Even if I could have, I wouldn’t have changed one thing about him. It was so unfair I had to lose him, but we always knew that day would come. We were true soulmates and had so much more to give each other. Now I have to carry on with Jay’s legacy: Teddy and Orla.”
We are also grateful to Jay's mother, Sharon, who previously worked with us in March 2017 to share his story.
Here is Jay’s story as told by his mother, Sharon…
In October 2011, aged 25, Jay was diagnosed with a grade 4 glioblastoma multiforme brain tumour (GBM4). He was given a prognosis of six months. More than six years on, while still on three-monthly scans, Jay is a devoted husband to Becky and dedicated father to Teddy, born in January 2017. He has a job he enjoys, working part-time as a graphic designer.
“Two weeks later we were given the histology results. Jay had a grade 4 glioblastoma multiforme. We went home in an agonising whirl to do our own research. It was not good reading. I quickly realised that the best way to cope was to look for the positives. I voraciously read the stories of patients who had good outcomes and ignored the negative ones. Regrettably, these were far and few between.”
Jay was a senior mechanic, doing the job he had always wanted to do. I can clearly remember his first word was “car” and from a very young age he couldn’t wait to learn to drive. It was all he ever wanted to do – be associated with motorsports.
Jay was doing really well and on a really good salary, working with top of the range, super sports cars. The only downside was that he and his girlfriend had split up, although looking back it was probably because he underwent various personality changes brought about by his condition.
He had become aware that he was starting to struggle with reading numbers or words, but had learnt coping techniques like asking people to read things to him. He also started to have little epileptic fits and had to pull over one time when he was driving.
Jay went to see the GP. As he was never ill, and then suddenly visited the doctor twice in six months, it should have signalled to the GP that something was wrong. However, Jay was told that he was depressed and recommended to go for counselling.
It was very worrying – Jay was becoming quite reclusive and shutting himself away in his bedroom. I couldn’t seem to get him to talk even though I kept on trying.
I have a number of rented properties and one day, Jay was at one of my houses with my daughter Jo. He was painting in a different room and suddenly my daughter received a one word text which just read “Jo” from him. Being a coronary care nurse, her sixth sense kicked in and she knew something was wrong. She rushed to him and instantly thought he was having a mini-stroke (or TIA) so took him straight to hospital. The first I knew about it was when she rang me from the hospital to say something was wrong.
Very perceptively, Jo had realised that the consultant had seen something which gave him concerns, so she put up a fight when medical staff tried to discharge Jay. She insisted he should stay and have more tests and not come home to wait six weeks for a scan.
Her insistence paid off and Jay was booked to have a CT scan on the Monday. He was sent home for the weekend.
The scan revealed a small mass on the brain. It was the last thing I expected – maybe I was being very naïve. We were given the devastating news that he would need an operation and that they would keep him in hospital and transfer him to the neurological unit at the Royal Preston Hospital. He had an MRI scan, followed the very next day by brain surgery. A registrar told us to prepare for the worst – Jay had a serious brain tumour.
The craniotomy was successful in removing around 60% of the tumour. Two weeks later we were given the histology results. Jay had a GBM4. We went home in an agonising whirl to do our own research. It was not good reading. I quickly realised that the best way to cope was to look for the positives. I voraciously read the stories of patients who had good outcomes and ignored the negative ones. Regrettably, these were far and few between.
On the other hand, Jay didn’t seem to appreciate how bad he was. He didn’t appear to be aware what a terminal prognosis meant – they told us it could be as little as six months.
Jay was put on steroids and started a course of radiotherapy and chemotherapy treatment.
He gained five stone while on the steroids – they made him very hungry. In hindsight I would have tried to control his diet. He was on a lot of different medications, but after a few months he decided to stop taking the steroids and also the chemotherapy.
Jay did eventually go back to chemotherapy, but after 10 cycles he was forced to stop because his body could no longer tolerate the treatment. He was so tired and stayed in bed for days, if not weeks. He also had to stop driving due to the brain surgery and the seizures he was having, which was incredibly hard on him as driving had been such a big part of his life. It really restricted his independence.
The sad thing was that there just weren’t any support groups around for people Jay’s age – they were all either for children or for old people. Jay decided to set up a charity to support adults between the ages of 18 and 40 and encourage them to have an active social community. At the same time, it gave Jay something to focus on. The charity, which he named “Inbetweenears” became Jay’s life – he embraced it with 100% of his energy and passion. As it was aimed at young people, Jay wanted to be more in touch with social media and so he started a Facebook page and Twitter site.
Since setting up the charity, Jay has met and married a lovely lady called Becky and 13 months ago, they had a baby son, who they named Teddy. When he first met Becky, Jay was very reluctant to start a relationship, but Jo and I both encouraged him, as long as he was honest with Becky about his condition.
Jay still goes for MRI scans every three months which throws us straight back to the dark place we were in when he was first diagnosed. He suffers regular seizures as the cavity left following his surgery fills up with fluid. He has had a reservoir fitted and this has to be drained every so often. We know when the time for this has arrived because it triggers a bigger seizure.
My worries about what might happen in the future never go away but I try to stay positive.
Jay couldn’t go back to the job he adored because he can’t drive, but happily the skills he developed when setting up Inbetweenears led to him being offered a job in graphic design. He works three days a week for a company in Clitheroe, which is perfect for him as he gets tired very easily.
The Royal Preston call Jay their “little miracle”. He was given six months, but he is still very much alive more than six years on. His oncologist and surgeon have both retired and I worry that there may not be the same talent coming up behind them or whether they will have the same depth of experience and passion.
I would like to see GPs becoming much more aware of the early signs of brain tumours and not, like in Jay’s case, dismiss his health concerns as depression. Early diagnosis gives patients a little more of a fighting chance.
I wish the government would put more funding into research. Brain tumours are killing too many people, particularly those under the age of 40 where it kills more than any other cancer. For this reason, Inbetweenears is funding a researcher at UCLAN within Preston University. These research centres shouldn’t have to be so reliant on charities.
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.
If you have been touched by Jay’s story you may like to make a donation via www.braintumourresearch.org/donate 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.