Karen P's Story

Karen’s husband Scott was 49 when he was diagnosed with pancreatic cancer. “He had chemotherapy,” says Karen, “but it didn’t do anything for him.” As his condition worsened, Karen found it increasingly difficult to care for him at home.

“We were referred to Phyllis Tuckwell and their nurses came round to look after him, but a couple of weeks before Christmas we realised that he couldn’t stay at home anymore. Sophie, one of the nurses, said it was time to come to the Hospice, and that’s when we came here.”

“Hospice equals old people, that’s what you think,” Karen says. “But then I went online and did some reading. I began to realise that that hospices aren’t just for old people.”

“I was still very scared though,” she continues. “I drove Scott here myself, and I felt as though I was driving him to his death. When I came in, I was flapping. I said ‘I’m bringing my husband here, he’s being admitted’. I was very abrupt. But the people on reception were calm and that helped me to calm down too. The nurses came up and Scott let them take him out of the car and put him into a wheelchair. As we walked through the door I felt a sense of relief. I wanted him to be here; I didn’t want the responsibility anymore. Although I knew that this was the end for him, I felt an overwhelming sense that they were going to look after him.”

Scott was admitted to the Hospice on 22nd December. The doctors told Karen that they didn’t think he would make it through the night. “I went and picked up Charles, our nine year-old son, from school,” she says. Scott hadn’t been able to eat or drink properly and was very dehydrated, but when Karen returned with Charles, his condition had improved. Relieved, Karen and Charles went home to collect some clothes so that they could spend the night at the Hospice with him. “The next day he had completely perked up,” says Karen. “I knew then that he was going to make Christmas Day. And that’s when all the Christmas arrangements here began, and it became the most amazing Christmas that we have ever had.”

One of the nurses who cared for Scott and his family was Luke. “Ah Luke,” smiles Karen. “He’s the sort of person you want to bag up and take home, because he is totally amazing. We had brought with us all of Charles’ Christmas presents, and all of the presents that Father Christmas had delivered early to our house, and we put them into a room here. I decorated Scott’s room with Christmas lights and a mini tree, and Luke and a couple of other nurses helped us to lay out mince pies and a glass of milk for Father Christmas. We put out a carrot and some reindeer food too.”

“We woke up at about six o’clock the next morning. We went straight into Scott’s room and Charles just stood there with his mouth wide open – he didn’t know what to say, because he’d assumed that Father Christmas wouldn’t find him here. The mince pie and carrot had been eaten, the reindeer food was all over the floor and the milk was gone too. I turned round and looked at the nurses, and there were tears, everyone had tears. I looked at Scott and he had the most beaming smile, and it was one of those smiles that will stick in my mind forever. He looked so ill but he was smiling, and that was what he wanted in his last days. He’d made Christmas Day, and just to see our son open his presents, that’s what he wanted.”

“Christmas dinner here was one of the best I’ve ever had – the food was amazing!. All the other patients’ families were there and the staff sat with us. We had an hour or two away from Scott, and he had a sleep. He didn’t have any dinner but he was pleased that we’d had ours. Even though we were going through a horrible situation, we didn’t feel it. We were with other families who were also in that situation and we were all trying to make best of it, and we did, for that one day, we were all happy. It was more that I could have expected; it was perfect.”

“Later on a couple of friends visited, so we had a mini Christmas with them in the evening, and then the next day it snowed. Charles and Scott sat making Lego and going through the presents. There were so many presents everywhere! It wasn’t just the ones we had brought with us and that Father Christmas had left for Charles – Father Christmas himself also came here just before Christmas and gave out presents to all the patients. I got presents, Charles got presents, and I got a massage from one of the therapists too, which was lovely. So much effort goes into Christmas here. It takes your mind off everything and it gives you a clear head to be that loving wife, that loving mother, on Christmas Day.”

“On 27th December Scott started to deteriorate,” says Karen. “I was holding his hand and he said to me ‘I don’t want to do this for much longer, I just want it over now’. He couldn’t eat and he was sleeping a lot of the time. There were no tears, because my husband was tough, very tough. He got through that day, but the next day I knew he wasn’t right. He was sleeping a lot and he was in a lot of pain. He couldn’t talk, but he could see me and he knew I was there. Luke and the other nurses went in to try and make him comfortable, and then they called me in. They said ‘his breathing’s changed, you need to come in’, and that’s the sign that it’s near the end. That was about half past seven in the evening, and he died at ten past eight. He died holding my hand. It was just me and him in the room and that’s how he wanted it. Two last breaths and he was gone. He was very calm, and so was I. The nurses had prepared me for it. He died sleeping, which was perfect.”

Karen went to get Charles so that he could say goodbye to his dad. “Although it was devastating, he wasn’t suffering any more. The staff were amazing, they just leave you for as long as you want. Afterwards, I really didn’t want to go home. I felt as though the Hospice had protected me; I felt like I was wrapped in bubble wrap and I didn’t want to go out into the big wide world. We could have stayed that night, but I thought ‘no, let’s get this next hurdle done with’, so we went home. I missed the Hospice, though. I missed all the staff, and the doctors pulling you to one side just to see how you are. I got help from elsewhere, from friends, but I didn’t want to let go of the Hospice. This was his last place, and we all got looked after – it wasn’t just Scott they looked after, it was all of us.”

“If I could scream out how good this place is, I would,” smiles Karen. “I came here at the most depressing time of my life – and at Christmas – and it was the most special time that I can remember as a family. They make it amazing for you. The whole stress of dealing with cancer is taken away from you. At home I was constantly making sure there were enough tablets, calling doctors, calling nurses, making sure that Scott was as happy as he could be, but when you come into the Hospice that’s done for you. A hospice isn’t death – it’s help. It’s calming, it’s peaceful, and everyone who’s here is here for the same reason, so if you want to sit in a corner and cry your eyes out, you can. There are people here who you can talk to, but if you don’t want to, you don’t have to. Charles talks so fondly of the Hospice; he doesn’t have any negative memories. The Hospice takes all that negativity away. We’re still getting offered things – counselling for us both, the Little Rays support group for Charles, phone calls from the nurses to check I’m OK. Hospices are a backbone. You realise that they are there to help you to the very end, and onwards.”