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Karen, Scott and Charles

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 also had a friend whose mum had died of cancer, and I went to visit the hospice where she was cared for, and 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. The nurses knew we were on our way. 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 very 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, and he was a very proud man but he let them do that. 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. The calmness that I felt was unbelievable.”  

We came in on 22nd December. It was a huge deal. His doctor had said that Scott wouldn’t make Christmas, so we had been having daily celebrations at home. We had these mini Christmas dinners - which Scott couldn’t eat, but he would sit with us – and we were giving our nine year old son Charles presents every day. Scott said to me I’m going to try and make Christmas Day, and I said you’d better, I want a present, you’d better.”  

When Scott was admitted to the Hospice, the doctors there told Karen that they didn’t think he would make it through the night. “I went off and picked up Charles from school,” she says. “I explained it to him there, and all the teachers were in tears.”  

Scott hadn’t been able to eat or drink properly and so was very dehydrated, but when Karen returned with Charles, his condition had improved. “As soon as he got in here he picked up,” she says. “When I got back from picking up Charles, Scott was a completely different person. He had needed the hydration to perk him up and he looked completely different. You start thinking ‘is this a false alarm, have I got more months of this now?’ In your heart you want the suffering to stop for them, and for yourself. You want it to be over, but you don’t want them to go. 

Relieved and calmed at Scott’s improvement, Karen and Charles returned home to collect some clothes so that they could spend the night at the Hospice with him. “I was adamant that we weren’t going to stay,” she says, “but one of the nurses explained that it was best to stay when he was so close to the end, so we did.”  

The next day Scott had completely perked up. That was 23rd December, and 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. Even though it was our last Christmas, and even though he died a few days later, it was the most amazing Christmas ever. Charles and I still say it was like being on holiday. To have had that in my husband’s last week of his life is totally amazing. 

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. You need Lukes everywhere in life. 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, all by the tree.”  

We woke up the next morning at about six o’clock. In the mornings here you just run around in your pyjamas, it doesn’t matter - pyjamas and slippers in a hospice, it’s unbelievable. We went 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, even though we’d left a key for him. The mince pie had been eaten, the reindeer food was all over the floor, the carrot had been eaten, 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.”  

It was quite a long process opening the presents, because there were so many of them, but every time Scott nodded off I would say to Charles to stop, and he would stop and wait until Scott was awake again before he carried on. Charles had an amazing Christmas morning, and he wouldn’t have got that at home. Had we been at home, Charles would have got a very poorly man sitting on the sofa, not this huge Christmas atmosphere which we had at the Hospice. 

Charles opening presents

Christmas lunch here was one of the best Christmas lunches I’ve ever had. All the other patients’ families were there and the staff sat with us – it makes you feel so much happier, having the staff around you. We had crackers and the full Christmas dinner. The food was amazing – I’d have eaten two or three! To think what’s going through your mind at that time, and then to find that you’re sitting in front of a Christmas dinner, in a hospice, on Christmas Day, with that wonderful Christmas atmosphere, it was just amazing. I couldn’t get over the food, it was better than most home-cooked meals. We had an hour or two away from Scott, and he had a sleep during that time. He didn’t have any Christmas dinner but he was pleased that we’d had ours. He said ‘I didn’t stop you from getting your Christmas dinner did I?’ and I said ‘you’d never stop me from getting food!’ Christmas Day here was perfect. 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. And I know if we’d been at home we wouldn’t have had that. It was more that I could have expected; it was a lovely Christmas Day. 

Later on a couple of friends visited, and they brought even more food! 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 presents 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, I got a massage from one of the therapists too, which was lovely. It’s not what you’d expect. So much effort goes into Christmas here. There’s so much going on, 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 one day 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. I said ‘I totally understand’. There were no tears, because my husband was tough, very tough. He got through that day and I started thinking maybe he’s going to make his birthday, because it was his 50th on 30th December, but then on the morning of the 28th I knew he wasn’t right. He got through the day, but 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. “It was a calming feeling,” she says. “Although it was devastating, my whole thought process was that he wasn’t suffering anymore. 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. But we had to go home. We could have stayed that night, but I thought no, let’s get this next hurdle done with, so we went home. I can’t believe it but I missed the Hospice. 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, and that’s the biggest thing. 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 talk to someone, you don’t have to. It was amazing for a young family to come in here and for my nine year old son to say he felt like he had the best holiday with his dad. He talks so fondly of the Hospice; he doesn’t have any negative memories. The Hospice takes all that negativity away from you. We’re always getting offered things still – 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.”  

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