‘Shine like the stars’: Jo and Jay’s story

“We had a very happy life”, says Jo, describing what life was like before the symptoms started. In a fairytale romance, Jo and Jay met in 2007 and they immediately clicked.

“It was kind of love at first sight, I guess – we started going out and by December 2008 we were married. My two boys were about 6 and 4. Jay didn't have children, but he took them on and treated them like his own. 

“He was an avid footballer and loved Man United. He also played in Sunday league teams. He was a very active person, very fit. He was just so likeable: everybody that met him, loved him. I’ve never met someone who had so many amazing friends!"

At first, Jay’s cancer symptoms seemed so insignificant that they were all but brushed off.

“In January 2018 he'd had a company private health check. They said he was absolutely fine, but then in the May, he started having difficulty swallowing. Food got stuck in his throat so he had to either be sick or choke it back up to clear it. 

"What made it cruel was that on 1st June we'd moved into our first house together. By the end of that month, we’d been told that there was a very invasive stage four malignant tumour at the junction of his oesophagus and stomach."

Jo says that from that moment on, it was ‘scary’:

“You suddenly find yourself on the cancer pathway and within a month he was undergoing chemotherapy. The consultant tried to be hopeful and told us, "people do recover from stage four gastro oesophageal cancer...but it's going to be a journey.

"We knew it would be an uphill struggle. But we never once gave up hope."

Despite the treatment, the cancer didn’t respond well, and Jay had to endure bigger and more invasive procedures. Essentially, the treatment wasn’t working.

“By the September the cancer wasn't getting worse, but it certainly wasn't getting better. In the October he underwent a total gastrectomy (removal of the whole stomach). It was a very complicated, life-changing operation.

Despite Jay’s initial optimism, there were times when, in private with Jo, he started to feel that he might not recover.

“You don't want to prepare for something like that [death], do you? Because you always have hope. But in the January after his surgery, his stoicism faltered. 

"He used to say, 'Jo, I can't do this... I'm dying, aren't I?' 

"We both knew that something wasn't right. We were reading stories of previous patients that had had a total gastrectomy – mostly they’d recovered. But Jay hadn’t.

"Over the next two or three months, he couldn't keep any food down. He had multiple infections and his nasal feeding system failed because he was being sick so often. We were always back and forth to the hospital.

"He just never got better."

"We started having conversations in the April, however I just couldn't accept it – you could call it denial – I think I'd already started thinking about the future, like an anticipatory grief. 

"It's really hard to say that out loud as a carer and as a loved one, because I needed to be hopeful for him. I needed to be his strength when he didn't have any. I took on that role for quite a long time."

Jo goes on to describe Jay’s terminal diagnosis, and the difficult thoughts and feelings they experienced:

“At the end of June 2019 the consultant agreed that something wasn’t right. After further investigations, they found that the cancer had metastasized pretty much everywhere in the stomach cavity.

"I remember that journey home. We just couldn't talk, it was too hard. We were faced with not just the possibility, but the reality of it. I remember thinking, 'how do I tell the boys?'"

“After a day, it was like a full circle. We thought, “let's just live for however long we've got.”

"On 14th July, five days after the terminal diagnosis, we renewed our wedding vows. It was a very emotional day because we knew what it signalled. It was almost the beginning of life, but an end of life as well. We knew it was the last time he would see many of his friends and family.

"Just a couple of days later, Jay couldn't walk, and was finding everything difficult. That's when the hospice team stepped in."

Jay was very clear about where he wanted to be at the end of his life. Jo explains how their local hospice stepped in to coordinate everything:

“He wanted to stay at home, so we spoke to Douglas Macmillan Hospice and they were just amazing. Words can't express how grateful I am to them. 

"They said, 'the hospice has got a bed for you – if you want it, it's yours.'

"After hearing his wishes, they set it all up: they got us a hospital bed downstairs, they put everything in place. Within 48 hours, my front room had been transformed.

"We had a doctor assessing Jay’s clinical needs: making sure that he was comfortable. We had nurses for emotional health, making sure he was okay. We had people talking about advanced directives and that Jay's wishes were taken care of.

"It was absolutely phenomenal. They were just brilliant."

For Jo, it was the willingness to go the extra mile and provide holistic family support that made an incredible impact on her:

“Jay had this thing for Ice Pops because he couldn't eat and drink. I remember one of them going out to get him some because I'd run out. There was so much compassion and kindness alongside the professional work that they do.

"When they came out, it wasn't just about Jay. It was about me as well, like being asked, “How are you, Jo?” That's a very short sentence, but it meant the world to me.

"Once the doors were closed and there was nobody around, it was just me and Jay. He was so scared but we would focus on the time we had and tried to be strong. It was always incredibly difficult. 

"If I ever rang up the hospice to say that Jay looked like he was in pain, within an hour I had a nurse in my front room, making sure his pain and his syringe drivers were done. I can't put into words what that meant.

"In the last 10 days I think I cried more than I've ever cried in my life. It was incredibly upsetting, but strangely it was also the best 10 days, because I spent them purely with him. We used to lie together and just talk and watch our favourite TV shows. It was special in a really upsetting way.

"Importantly, with the support of the hospice and care teams they facilitated a ‘good death’ for him. That is what I carry with me now, that they listened to him and to me and made sure that in the saddest of times, we could treasure the memories of those days. I know Jay was grateful for all their help. 

"Even though I have written two books about it, it’s hard to put into words how grateful I was back then and still am today, to all the teams involved with Jay’s care.

Jo says that the boys developed their own special ways of coping and supported her and Jay as best they could:

“Our sons would have been 18 and 20. They didn't really know what to do, so their way of helping was to help me because they knew Jay was getting the care he needed. Simple things, like they'd make dinner, or just make sure the house was tidy. I’m so proud of them and I know Jay was too.

"They were struggling too, but the hospice team were great. They offered to speak to them and support them. It was offered to all of us. They sat down and showed us all the groups that we could go to, not just before but after as well: different types of services for individuals, families, and group therapies.

"It was tough on all of us but having that support meant we felt like we weren't on our own."

Jo says that Jay asked her to make 12 promises to him:

“One was that if I met somebody else that they’d have to love me for who I am: all my little quirks and good things and bad things.

"I now feel very blessed, as in 2022 I married Gareth. He's an amazing man who loves me unconditionally. My heart will always carry an emotional scar, because I'll always love Jay but Gareth supports that and is so understanding.

"Another promise was about my career, he said “Jo, shine like the stars – you were meant for bigger things.” He said, “shine, because it's in there, you're just not doing it.”

"I feel proud that I get to do a job that I absolutely love. It’s amazing and it is a privilege. What a legacy to leave."

After Jay’s death, Jo felt both inspired and compelled to use her experience to help others:

“The care that was shown towards me during and after Jay's illness, the compassion, kindness and the help I was offered, was inspirational. 

"I just thought, I want to do that. I want to help people like me because I saw how amazing and how life changing it can be.

"Jay's funeral was in the August and I think by the October I'd handed in my notice at work.

"Everyone thought I was crazy doing it. Nonetheless I took a leap of faith and went back to university to do a degree in psychological studies, as well as other academic courses which I've since successfully completed.  

"Four years later and I am sitting here today as a qualified grief and bereavement specialist, and I am now helping others. Jay told me to ‘shine’ so I did.

I often sit with people now and I will say, 'I cannot understand what you're going through because it's your unique individual journey, but I can relate to it.' It’s real pain both physically and emotionally, and they don’t have to describe it to me – I just get it."

Jo explains how she carries Jay’s spirit with them every day:

“We all miss him, but I think everything I do is in Jay’s memory. I look at the work I do now and I smile because I think, 'your life carries on through us, and now I'm in this place of such happiness.'

"I'm so proud of Jay, the life he had and the memories and legacy he leaves us with. He may not walk beside us anymore, but he is here, always."

Jo is an incredible example of someone who has experienced grief and trauma, and harnessed their power as tools to help others. We asked if she had any advice for people who might be going through something similar:

“I would say to people that no question is a silly question, no matter how small it is. If you don't ask questions you don't get to ask them again. The Hospice team know what they're talking about, so the truth is that it probably isn't a silly question at all: if you're thinking of something, it means you need an answer. So always ask questions!

"Also, it's okay to not be okay. It's okay to have those bad days and to feel as if the world is a dark place, because at that moment in time it is.

"But there is hope and you can have a meaningful life after bereavement which is so important, there are people out there that will help you and support you if you need it. If you can, accept the support, because it's there, and quite frankly it's phenomenal."

Thank you to Jo for sharing her story.