Charlotte explains how our Hospice at Home nurses helped to care for her husband, Glen. In 2021, Glen was diagnosed with an extremely rare cancer, an embryonal sarcoma, on his liver. The cancer had not been seen in an adult for over 15 years.
“I found out I was pregnant with our daughter, Aurora, in February that year. We were just loving life and getting everything ready for her.
Then in May, Glen got a pain in his stomach. We thought he’d just pulled a muscle, but he was still in pain three weeks later. A scan showed a large mass on his liver. His stomach just kept growing and growing and he was in a lot of pain with it. He was a really fit and healthy guy but at eight months pregnant, his stomach was bigger than mine because the mass was so big.
The operation was fraught with risks
He needed an operation to remove the mass but because it was growing so much the hospital said it would be too dangerous. We couldn’t just take that as an answer. So I rang around and we managed to find a surgeon in Cambridge who operated in late August.The operation was fraught with risks. It was life or death really, but Glen wanted to see Aurora, and we had everything to live for. They removed a mass the size of a watermelon. It was 17lbs (8kg), the same weight that Aurora was when he passed away.
He made it through the operation and had the biggest scar you would have ever seen on his stomach. He was in ICU and then he was focused on getting home as by then he’d spent several weeks in hospital.
He wanted to be at home
All he wanted to do was be at home in Derbyshire and start nesting down for Aurora who was due at the end of September.
Because the cancer was so rare, they didn’t really know how to tackle it. So he had a really extreme chemotherapy routine. Every three weeks, he had to go into hospital and be hooked up to a drip for about 48 hours. He’d have a whole weekend in hospital having chemo, then three weeks off. He had ten rounds of it.
Glen was given the all-clear in May 2022 and we said this was going to be the start of our future together.
We were told the cancer was back
But then in August, just three months later, we were told the cancer was back.
This time, it wasn’t just a mass. It was taking up the whole of his insides, in every nook and cranny you can imagine. They said there was nothing that they could do, but we couldn’t take ‘no’ as an answer. I went to all the specialists with his scans, but they all said the same.So, then we had a hard decision. Do you take the chemo and potentially be really poorly, or do you go for end-of-life care? Glen took the very hard decision to go for end-of-life care.
He’d spent weeks in hospital, and didn’t want to be there again. His priority was to be at home and be with Aurora, and his family as much as possible. Being a Dad was the world to him. We’d longed for Aurora for a long time, and he just doted on her.
Hospice at Home end-of-life nursing care
We got all the equipment at home and that’s when we started talking about Treetops Hospice at Home care.
We didn’t know anything about end of life care. You never dream it’s going to happen to you. You never dream it’s going to happen to somebody so young as well.
All we wanted to do was keep Glen at home, keep him comfortable. But because of the extreme nature of his cancer, the pain was excruciating. It wasn’t easily manageable. Every day we were upping the pain relief and trying to get on top of it. The Hospice at Home nurses were like rays of sunshine. They would ring us up as soon as they started their shift and ask if we needed any help because they knew how much pain he was in. They would come straight away and sort him out. We had that reassurance that if the pain did get bad or we had any issues, they were on hand for us.
The nurses were so kind and thoughtful, and mindful about our situation. Aurora was only 11 months old, and your brain doesn’t function as much as it normally does. They got to know us so well and would ask about her. They spoke in really simple terms so we could understand and would answer any questions that we had. They gave us the knowledge that we needed in a language that we needed, which was simple to understand. It was important because you’ve got so much whizzing through your head.
The nurses were lifesavers
Me and Glen’s Dad were sleeping downstairs in the living room with him. Having the nurses meant that all of us could sleep for a few hours, and it gave us peace of mind. They were lifesavers for us in those moments.
We found out about Glen’s diagnosis on the 8th August and he passed away 20 days later.Without the Hospice at Home care, there’s no way we could have kept Glen at home, purely for the pain management side of it. He would have had to be in hospital with 24 hour care. Home was the priority for him. It meant that he got to experience things, people got to see him and he didn’t feel like he was in a clinical environment.
He got to see that Aurora had started to walk, He got to see her bedroom and play with her toys with her. He got to be with Herbie, our dog. Anybody could just come and see us. He could have all his favorite food, not that he was eating much. He was requesting McFlurrys because he loved ice cream.
We were able to fulfill his final wishes
One night, we sat down and read through all the letters that we wrote to each other when we first started dating. We got all the photos up from our holidays together and reminisced. We’d made mix tapes for each other, so we had them on in the background which was lovely.Without Treetops help we wouldn’t have been able to make that horrific part of our lives manageable and we wouldn’t have been able to fulfill his last wishes.”
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