Sean had never wanted to know what type of illness he had or what the outcome was going be, he just wanted to know what was next treatment-wise. The stress of it all… you're trying to deal with it and my daughter Katie was only 14 at the time, and then you've got so many friends and family contacting you and everyone wanting to know what the next thing is, which is lovely. You're just constantly on the go but this adrenaline keeps you going. 

By about February 2019, we did start to talk to the Hospice because we were struggling a bit. A nurse came out to the house and we were talking about having Hospice in the Home and they were starting to deliver bits and pieces to the house. But then Sean took a turn for the worse. He went into hospital for a couple of days and when he came out, the doctors said actually, you need to go on the list for going into the Hospice, and within about 24 hours we were here, so that was very good. We came here at the beginning of May 2019 and that was the first time we'd really had a lot to do with the Hospice. 

He was on the ward for a couple of weeks and then the remaining six weeks he was in a single room looking out onto the garden and that was really nice. The Hospice nurses were fantastic and he did have a really good laugh with them at the beginning when he was feeling more well; he was a cheeky Irish man and he did have a really good laugh with everyone, especially when having a bath!

Sean and Sue when they met in Brisbane 1998

He was here for about eight weeks, which is actually quite a long time because I realise now that some people come and go a lot quicker than that for one reason or another. Because he was young and the rest of his organs were fighting fit, it seemed like a long time; now I think two months flies past but while you're in this situation, it's a bit different. 

I don't think you're ever in a place to be ready to lose somebody, especially not when they're young. I think coming into Hospice was nice for me in that I was struggling at home a bit, so it took that pressure away from us. I'd said to Katie, do you want care at home or do you want Dad to be in the Hospice? She said she thought it would be nice to be in the Hospice because then home was still home. 

It is really tough because you know that eventually you're going to be on your own and you're still going to be a parent to a young person and then it's going be difficult for you to manage your own loss and then you’ve also got someone else's loss. 

And then you have the ripple effect of everybody's loss; I can appreciate that he's a son and a brother and he's an uncle and he's a friend. So you know everyone was obviously worried about me but you know that everybody else is feeling it as well. 

Sue and Sean with their daughter Katie in 2006

Here they help make your nice memories. The bath is brilliant, very calming. He was allowed to have a drink if he wanted, like a beer or Guinness. If you suggest something they do listen and try to take that on board, which I think is really nice. 

One of the main things is that on the 1st of June, and he died on the 18th, it was our wedding anniversary. Would have been 17 years we'd have been married, although we'd been together longer than that. It was a sunny day and they suggested why don't we bring Sean into the garden in the bed, and loads of our friends and family came over that day and we spent a couple of hours out there, put up umbrellas over Sean, and the family chatted. 

Sean wasn't really talking then but he was able to see everybody and he realised who was who, so that was really nice. It takes a little bit of work for the staff to get a patient out into the garden and set up but they encouraged it and were really good. They were happy for us to decorate the room with bits and I think that they do go above and beyond.

There's just so many different points within that journey of the patient being ill and then coming into here and the care from the different people, it's not just nursing care, it's all to do with the mental health side too for the patient and for the family. 

Sean with his siblings on his 40th birthday

We raised about £8000, Katie and I, so we were really chuffed. I definitely want to do something else. That was only eight months after Sean died but it was really good.

I think you can only lead by example; Katie has seen me get up and get on with it, and she has seen me sad, and we talk about Sean a lot and everybody does, and that's a good thing. Katie has done really well. 

It's been really tough and I've been very worried about her over these last years because teenagers at the best of times are scary creatures. They worry about all sorts of things and you don't know whether they're telling you everything, but I hope that what's happened to her makes her stronger. 

I think she'll be a good friend to people down the line because she's experienced loss so early, whereas some find it difficult to understand as they've not experienced even the death of their grandparents which is usually the way things go, so she's found it lonely in that respect. 

Even I've found that bit a bit lonely but at least there are groups for widows, there's not so much for children. 

Katie, Sean and Sue in Cambridge 2018, the year before Sean died

I feel quite comfortable going onto the ward and to the rooms, taking the families through to see their loved ones, because I've been on that other side. I think I understand how they feel and also when they're rushing to come through or they're trying to get through on the phone or they need a call back, that I know exactly where they're at with that. 

Of course, it's very sad when people die, and I've been here when that's happened a couple of times and that's tough, but I do see lots of people go home too.

I’m not working at the moment and as long as I can afford to, it’s my choice what I do. I like that I can come here and volunteer and I like being about to see my parents and spend time with them. And I’ve got my daughter and she’s only got me now. Because of Sean, I’m much more in the present so I think everything else becomes less important.  

Sue on reception at the Hospice

Sean with newborn Katie

Sean celebrating his dad's 80th birthday