You Will Eventually Be on Your Own

Sue Quinn, who volunteers as a receptionist at St Helena Hospice, was motivated to donate her time and skills after her husband Sean died there age 48.

Taking a coffee break from reception in the Hospice lounge, Sue shares that difficult time and how the experience drives her to welcome and support other families arriving at St Helena Hospice.

Giving Back Your Own Time

“It’s a really friendly place to volunteer and I feel as though I’m giving back. I was at the Hospice with Sean so it feels familiar, which some people might think would be a bit difficult to come back to somewhere like this, but I actually find it quite peaceful.

Sean was diagnosed with a brain tumour and in October 2017, he had an awake craniotomy, followed by radiotherapy in February 2018 and chemotherapy in December that year. He became quite unwell. I went into fight mode really because that’s just my way and you have so much adrenaline in your body that you seem to be able to manage, so I think I took over in a way; I was on top of all the appointments, I was chasing up if we were due to have something or if something wasn’t going quite right. You want your person to get the best of care.

Sean had never wanted to know what type of illness he had or what the outcome was going to be, he just wanted to know what was his 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.

Help From The Hospice

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!

It’s amazing what all of a sudden you’re thrown into. He had to have a lot of hands on care and I felt I was looked after too; people made sure I was eating and taking some time away for things like reflexology with one of the volunteers. Thankfully there was no Covid, so friends and family could come as and when they wanted, and they were very welcome. Because we were a young couple, we did have a lot of people come. Sean’s family came from Ireland, his friends were popping in and out, my friends, my family.

My daughter Katie was just about to take her GCSEs while Sean was here, so would come here and see Sean and then she’d study over in the little hut the other side of the pond, so it was quite peaceful for her.

Just Like Home

I think because we were very friendly, the nurses felt they could come and go and people would come and talk to us, so we got to know everybody quite well, which was good for all of us. It was good for Katie to just feel as though she could wander around and go into the kitchen and get some food. I’d always have my dinner here and then if Sean went to sleep, I’d go home.

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 the 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.

Being Left on Your Own

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 to 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.

I don’t think you ever recover from these things. As they say, you sort of manage to build some strength, and then you kind of grow around it. So it’s always there, loss is always there and that’s really sad. I think I’m more sad that he’s not here to see all the things that are going on, what his daughter’s doing, and what his friends and family are doing. I kind of feel that sadness because I’m still here and I still get to see Katie doing all these amazing things. It’s tough. That’s probably why I volunteer. I love it.

Making Every Moment Matter

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.

Making a Difference

Sean died in the June and in September they started advertising for the charity trek in Transylvania, which was going to be the following February. Katie and I talked about it and we got the last couple of places and signed up for it, and then in February half term of that year, 2020, just a month before Covid lockdown, we went in the early hours to Romania and we did snow trekking through the mountains for four days. Ohh my word, it was tough, really tough but snowshoeing was absolutely brilliant. It was very good mentally for us because it was something completely out of our comfort zone. We got to stay in different lodges and we were even up in a hotel in the snow mountains. We met some nice people and some of them had experience of the Hospice and some were just doing it, so that was really quite comforting.

We raised about £8,000, 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.

Inspired to Volunteer

I really enjoy volunteering on reception, it’s good fun. I have found it tough at times because I see some people come in who are very unwell and that’s difficult because it reminds me of Sean and I think because I know where the families are coming from, I know what’s coming their way. But then on the flip side of that I have been chatting with a few families just naturally about my experience and spent some time with them, and they seemed to have found it very helpful.

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.”

If you have been affected by the contents of Sue’s story, click here to see how St Helena Hospice can help you.