Luke and Karen's story - Isabel Hospice

Luke and Karen’s story

"Luke was a very well-respected man. He was straight-talking, had a genuine interest in people’s lives and was a really good laugh."

Luke and I both grew up in St Albans. I had moved away but when I returned, in 2003, he and I had lots of mutual friends. We eventually got together on Christmas Eve 2003 at the Bunch of Cherries pub. We lived in St Albans for several years, and in 2014, once we had our children, we moved to Welwyn Garden City.

Luke was a very well-respected man. He was straight-talking, had a genuine interest in people’s lives and was a really good laugh. He was a keen sportsman and played Sunday league football religiously. He played for and captained his local football team, even after he was diagnosed and during chemotherapy – he was pretty unstoppable! He was a kind and loving husband and dad, was always making us laugh and supported us in all aspects of our lives.

When we got the diagnosis, we were in disbelief. It was so surreal. The fact they diagnosed stage 4 meant we had a lot to think about as he would not be cured. How would we explain this to the children? How long would he live? It was a devastating time.

Luke tended to live in the moment whereas I looked further ahead. This was when I found the hospice. I had a lot on my mind about what was going to happen and how we would cope, and I had many counselling sessions to help me navigate that.

We began to ‘live’ with the cancer. We went to Centre Parcs and Disneyland Paris to make memories with the children and had other lovely holidays with family members. Luke had chemo every two weeks for the duration of his illness, so it was very challenging, but we made the most of the time we had and he was so incredibly brave.

Luke was stoic throughout. He did not want to die at home, but there was a stigma about hospice care and none of us really knew what he was going to be like in there. He arrived at Isabel, reluctantly, very near to the end of his life. He didn’t really want to engage with the Hospice, which may have been to do with denial about his condition, but the staff were responsive to his wishes. He didn’t want to celebrate his birthday and they understood. And that is the beauty of hospice care – they never assume they know what you need. They listen.

Despite Luke’s reluctance, I know both he and I felt extremely relieved to find ourselves in their care. Things were becoming unmanageable at home and a bit scary, and the Hospice felt like being scooped up and wrapped in a warm blanket. Initially, the nurses came to our house to set up syringe drivers and give medication etc., which enabled him to stay at home for as long as possible. I think that Hospice at Home helped to transition him mentally into accepting what was happening to him.

He was admitted to Isabel at the very start of lockdown. I told him about the madness going on outside: no toilet roll, no pasta. The staff were so respectful of how people wanted to get through this awful time. I have a huge respect for the job they do, which was made so much harder by the pandemic. They had to push themselves that extra mile to manage the disappointments that people were experiencing, at not being able to do things the way they wanted.

Luke had a really lovely private room. He commented on how much he enjoyed his first meal there, which was salmon. After that initial visit, he definitely felt more comfortable.

The stand-out moment was when they moved Luke. I was so distressed. The Hospice was closed and restrictions were brought in. I was very upset when I was told the children couldn’t visit because of Covid. But half an hour later, they called back and said, “We’re sorting it out.” They made a disused bay liveable, and allowed the children to enter using access at the back of the Hospice that no one else could use. There were four beds in there, and they had set up a table and chairs so the children could do homeschooling. It was lovely to have a space to visit safely. The staff were absolutely wonderful. The care we received was excellent.

The Hospice gave the children wooden hearts and crafts, which they hung around Luke’s bed. Under the circumstances, when they were under lots of pressure, they really went above and beyond to accommodate us at the most important time of our lives, and I’m so grateful for that.

Luke died the day after his 40th birthday, on 29 March 2020. He had been diagnosed with incurable bowel cancer in December 2017. When he died, they tied a white ribbon to the door handle. It was the little touches.

I used to love Christmas. It was my favourite time of the year. But when my mum died, I lost a bit of that Christmas sparkle, and then when Luke died, I was done with it.

Isabel Hospice’s Lights of Love campaign might be a therapeutic way to bring back a bit of what’s been lost. Our children – Freya, 12, Sam, 10 and Matilda, 8 – expect Christmas to happen. Last year, after Luke died, I didn’t want to stay at home. So, I put my big girl pants on and decided to take the children by myself to Lapland.

When it was cancelled due to lockdown, I had to put on a jolly Christmas persona for the children, which was so hard. On Christmas Day, I spent an hour in my bedroom crying. I felt like a fraud.

This year, we are going to Lapland.

When Luke was diagnosed, I started training to be a children’s nurse. I knew I’d need to support the children on my own and I really wanted a fulfilling career where there would always be work. I’m going into my final year of studies and I love it! My hospice experience inspires me to show empathy and care to families at their most difficult times.

When you are facing extreme vulnerability, hospice support is vital. Isabel Hospice deliver their care unequivocally, with passion and kindness.