“The respect for his wishes was incredible all the way along.”

I met James when I was 16, so we were together for a very long time.

He became ill in 2023. It turned out that he had cholangiocarcinoma, cancer of the bile duct, and we found out that it was stage four.

James was such a determined person. He was so determined to find a cure, or at least a way to extend his life. He spent all of his time researching and looking at treatments and different options. It was nearly like my job as well. It was a team effort.

All along, he had been reluctant to have much to do with the hospice because he thought, “No, I’m going to get better. I don’t need the hospice.”

When we were at home and James was quite ill, he had palliative care nurses come out to him. They were a real lifeline for us because I felt that when they weren’t there, I was in charge of his care, so I was really glad to see them come. I could bring up any issues I had with them, and they were very caring, in an emotional sense as well as a physical one.

When his illness progressed and we had explored all options, James reluctantly agreed to come to the hospice by ambulance.

“This is the right place to be”

When I got to the hospice, I came separately because I had to drive. James was in bed and the patio doors were open in the room he was in. The sun was streaming in and I could see the flowers outside the door. It was just beautiful.

I walked in and I thought, “Oh, okay, this is the right place to be.”

James was wrapped in blankets and he looked so much more at home than he would have in hospital sheets. They were proper furry blankets and it looked lovely, I instantly felt he was being “minded”.

He said to me, “I went for a walk around the grounds.” I didn’t believe him at first, but then I spoke to one of the nurses later and she said she had brought him for a walk around. He was curious about the place, and that helped him with his fears as well. He could see what it was like.

That really touched me.

I was told to put up whatever pictures I wanted, so I got my mum to bring in a huge photo of us as a family. It was right in front of his bed, so that when he opened his eyes, that was the first thing he would see.

We have three boys. They would come in and do pictures with Kathy, the art therapist, in the art room. Our middle guy loves art, so he got so much out of that and found a lot of comfort in it.

They all just loved coming in to see us, which you wouldn’t really expect with a hospice. You’d think, “Oh, it’s somewhere you have to be quiet and good,” but it wasn’t like that at all.

Everybody here kind of made it special when they came in. They would bring in this big TV and we’d have a movie day. The first day that we did that, they brought in a trolley full of snacks and sweets and things, and my boys just couldn’t believe how lucky they were.

They discovered that Mary in the kitchen makes really nice milkshakes. They still talk about it. Anytime we have a milkshake now, they’ll say, “It’s not as good as Mary’s.” Every single time, everywhere we go, we rate it now, and Mary’s is the top level.

It was a really, really special time, it wasn’t a sad place for us to be. We had some special moments here as a family, of course there were sad times, but the hospice had space for all of our emotions.

There was plenty of sunshine and laughter, and we had great craic with the nurses when they came into our room. They had time for a chat as well as doing what they needed to do, it felt so warm compared to what we had been used to.

While we were here, summer turned to autumn. We loved being able to see nature from our bedroom. We could bring our boys outside and they could run through the leaves. They loved that.

We were here for three months altogether.

Those small, small things

What stood out to me on my first day here was the respect they showed James. They cared for me so well, but they always respected him as a patient and listened to his wishes.

As he became more ill, they were so dedicated to making him feel better. He was very nauseous, and they were determined to get on top of the nausea and pain. They were always trying to balance it. He wanted to be awake enough to see the kids, and they really respected that.

That level of care and consideration for his wishes was so important all the way along.

Those kind of small, small things that let the patient just feel that they are still in charge here.

When he died, we all got little crocheted hearts to put in with him. We kept one each and placed one with him as well. I thought that was such a lovely touch. It gave us a lasting connection, and the children could see that they had something of their own to keep while also sending one with him.

What a lovely thought. It’s really, really special.

Always a connection

There has always been a connection. There’s never been a time where I’ve been out of contact with the hospice since James passed away.

I greatly value the counselling that I have with one of the Bereavement social workers. The first day that I met her, she started off by asking me how we had met, and I thought that was so nice. It took me out of my darkness and grief and let me speak about better times and come into it that way.

We were such a unit that it’s still shocking to me that he’s not here, to be honest. I was 16, so from 16 to 40, that’s when your whole self is formed. We felt inseparable.

One day I said to my mum, “I don’t feel him around. Like, where is he?” And that night I was looking through paperwork from the hospice and I found a letter that he had written to me with help from Christina, another social worker. I had thought he was writing his life story with her. I hadn’t realised he was doing a letter to me, it must have been so difficult, but he had her support.

It was exactly what I needed in that moment.

It’s such a precious, lovely letter. Christina spent hours with him, and I would go off for walks and things, and she would take down the things that he wanted to say. She made these really lovely letters, and we did cards and letters for the kids.

What a special thing to have now.

I feel good here, I feel close to him. When I drive in, I get this sense of peace because we spent so much time here.

Losing someone you have such a strong connection with can feel very lonely, but I don’t feel as though I’ve been cut loose from the hospice service.

I’ve been told that I can come in here for as long as I want to and need to, and to have that facility is really important to me. I feel that I can call on them if I get worried about the boys down the line.

To still have this connection is really important to all of us.

Marian Hastings
James’s wife