Joe’s story

My husband, Joe, was a force of nature. To our young daughters, he was their funny daddy – always happy to make up stories and play games. Eryn and Felicity thought Daddy was magic: he loved performing the trick of pulling chocolate coins from behind their ears, and I was always finding chocolates in his pockets, or around the house.

That was Joe all over – he had a talent for finding the magic in the everyday.

Image above: Joe, Tania, and daughters Eryn and Felicity, pictured at Joe’s birthday celebration shortly before he died

When he was diagnosed with melanoma, he was incredibly brave and strong. He was still doing triathlons until a few months before he died – at the age of just 34.

Joe wasn’t afraid of dying, but he was frightened that his daughters wouldn’t remember him. I was never going to let that happen.

We tried to be straightforward and honest with the girls about what was happening, but when our St Barnabas House social worker first came to meet them, she saw that they didn’t understand the reality of the situation. She helped us explain everything and prepare them as best we could. She is still supporting them now, nearly five years later.

Love for life

Joe and I met when we were both teaching at a primary school in Crawley. We got together in 2010, had our first daughter – Eryn – in 2014, and got married in 2015, on the bandstand in Brighton. Two years later, Felicity was born and we became a family of four.

Joe was an extremely active person. He’d been into sailing when he was younger and when we first got together, he was very much into wind surfing.

Later, he got into triathlons. He was a member of the Tuff Fitty Triathlon Club in Littlehampton and he absolutely loved it. It was a sport at which he excelled – to the extent that he qualified for the world championships in 2020. Sadly, he never made it.

Joe was diagnosed with melanoma in 2019, but the journey really began in 2017, when he had a mole removed from the back of his head. Everything looked okay, but that summer, he came off his bike and scraped his leg badly. It seemed to take a very long time to heal, but eventually it did. Then, a lump appeared in his neck. I had to force him to go to the doctor, and when the tests came back, they showed that he had cancer, which had spread to his lymph nodes.

Initially, the prognosis was quite positive, and he was having immunotherapy. Around Christmas 2020, he was feeling more tired and unwell, as well as suffering from back pain. We discovered the cancer had gone to his liver, and that’s when we were referred for palliative care at St Barnabas House. The girls were still so young – Felicity was just three, and hadn’t even started nursery yet.

Image: Joe cycling past Arundel Castle while competing in a triathlon

Making memories

As soon as we found out Joe’s cancer was terminal, we booked in lots of fun activities to do as a family. Life was about making memories, and we did as much of it as we could. We went and stayed in a treehouse, which was something he’d always wanted to do, and it was amazing. Joe and Eryn fed the penguins at the zoo, and he and I managed a couple of stays at the hotel in Brighton Marina where he proposed.

We had always planned to have a big party and a second honeymoon for his 40th and my 50th, which would have been this year. When we found out he wasn’t going to be around for that, he decided he wanted a party right away. Fortunately, Covid restrictions had lifted by then and we had a huge celebration with family and close friends. It was incredible, but exhausting.

Care and support from our local hospice

When St Barnabas came into our lives, the nurse came for a chat to see what we needed. One night, Joe had been paddle-boarding with the girls during the day and it had obviously been too much for him. A nurse came out to give him morphine because he couldn’t get off the sofa.

A few weeks later, she asked where Joe wanted to spend his final days. Initially, he wanted to go into the hospice because he didn’t want the girls to see him so ill. He thought I would stay with them at home. We actually ended up having an argument in front of the nurse when I said I wouldn’t be leaving his side. The nurse told us that they could bring everything we needed and support us at home. He had a hospital bed in the living room, and the team managed to source a bed from one of their charity shops so I could sleep next to him.

While Joe was able to sit up in his chair, the girls would play board games with him. And even in his last couple of days, when he was in bed, he was still doing his coin trick with them. On the Monday and Tuesday evening, I did the girls’ bedtime stories on the bed next to him and, late on Tuesday evening, he died.

Image: Joe playing with his daughters at home

The gift of love

It might go some way towards explaining how amazing Joe was when I tell you that, despite everything he was facing himself, Joe created memory boxes for both of the girls and me. He wrote birthday cards for them going up to their 21st birthdays and bought special presents for their 13th, 18th and 21st birthdays. It was unbelievably painful watching him write the cards. There were lots of times he just had to stop writing and he was just saying, “I can’t do this, it’s so hard.” He was crying, but he made himself do it. He was just incredible.

I didn’t know he’d made a memory box for me until a couple of days before he died. He’d bought me a bracelet with a row of stars – he wanted us to think of him being in the stars, like in The Lion King – and written a beautiful letter about our lives together and what he wanted me to do next. I’m ignoring some of that at the moment. He didn’t want me to be lonely and hoped I would find someone else, but I could never bear the thought of being with anyone but him.

Joe had arranged for me to receive a bouquet of flowers every month for a year after he died, and he’d written all the cards himself. Every birthday, the girls are excited to open their card from Daddy. But they dread it too. I know how they feel – it’s so lovely and wonderful because in that moment, Joe’s still here. You hear him in the words he’s written, but at the same time he’s not here with us and that is deeply painful.

Continuing bereavement support

My advice to other families facing what we did would be to keep talking to each other. We found it so helpful to have our St Barnabas social worker to help us discuss difficult subjects with the girls. She took them aside and – using stories and games – helped them understand the treatment, the process and what was happening. They are still so young – Eryn just started secondary school – so it’s been invaluable to have that support continue after Joe died.

Last summer, I asked for help myself and started bereavement counselling at the hospice. When Joe died, I tried to juggle everything and stay strong for everyone else. I went back to work but really struggled to keep everything going, so when my contract ran out, I decided to take a break and try to face my grief head on.

This year is difficult – it would have been Joe’s 40th birthday and it’s my 50th. We had so many plans, including going on a second honeymoon, but life looks very different now. Joe was such a kind, loving person and we miss him every day. For our girls, he’s in the stars – but he’s definitely left some of his magic behind.