Tom is being supported by St Helena Hospice through counselling and by our hospice in the home team. He shares why talking about ‘dying matters’, matters:

For me, it’s important to have conversations with my close family - my wife and children who I love dearly - it’s important that I understand what their needs are, I want to help them. It is a very difficult situation for anybody going through this; as their father and as their husband, I want it to be as helpful as I can and I don’t think that’s unusual.

From the practical, obviously I want to make sure that when I’m gone my family are as secure as they can be financially, which is important, and I don’t want them to be stressed any more than they will be in a difficult circumstance. So it makes me feel more comfortable and less anxious if I know those things are in place. 

Emotionally, it’s important I understand what their emotions are and I try and help them with those by having conversations which they want to have, having prepared things which they want prepared. I’m no saint and I’m not an expert at this but I suppose those are the things I found to be foremost in my mind. 

I have completed a My Care Choices record. Well, I say completed, it is a bit of a work in progress, but I’ve got the things that are essential down there and I plan to add to it as things might occur to me. I initially filled it out with somebody from the hospice who helped to do that and it was really helpful because they raised things which don’t even occur perhaps to you.

I think as time goes on new thoughts occur to me, but I would say I’m in a reasonably good place to die, if you can be in that place. I think last time I received news of my cancer coming back it did give me another opportunity to think about those things. I did make some positive changes, I clarified a few things, and I opened up new conversations again with my close family about the details around this, which again was helpful. So yes, I am maybe not as prepared as I could be, but prepared for that eventuality, I suppose.

Generally it’s been a very positive experience of those conversations; they’re not always easy especially at the beginning. As time goes on we get more used to having those conversations but generally I have found them to be very positive.

I want my family to be… I mean we use the word happy and I’m not sure that’s the right word, but obviously I want them to be fulfilled. I want them to be content, happy. I want them to live the kind of lives they want to lead. That’s what I try to do as a father and as a husband to some degree is kind of facilitate that; what I try to do with my daughters is to try to facilitate and make them think about what is going to make them happy and fulfilled in the future. We talk about it quite regularly.

I think one of the things this has done, although we’ve always been a very open family, is we do have good conversations about the future and the present, and the past.

I would certainly encourage everybody, and not just people with life limiting conditions, to have a think about the future. It’s important you try and communicate and have those conversations and if you need help, you reach out for help. St Helena Hospice is a wonderful institution that obviously provides help to people in difficult situations and helps them to have those conversations. 

These conversations are not always easy and they don’t always run to plan. I have made mistakes myself, things that I’ve said especially with children and relatives, you have to make judgements and they’re not always right. I’m no paragon of virtue, I’ve made mistakes but you know we all do make mistakes in life and I suppose the conclusion should be it’s better to try and have these conversations and if mistakes are made, all you can do is apologise. But not doing them because of fear of making a mistake or upsetting somebody is really not – it shouldn’t be a barrier. You don’t always get things right and that’s why having conversations is even more important so you can find out hopefully what people need from you especially your close family. 

So I would really encourage people to speak to their close family and friends to reach out to them, get through the discomfort, the initial discomfort, that they might feel that they might have. Discomfort is a passing thing and it’s something we’ve all got to get through but it’s never as bad as you think it’s going to be. Embarrassment, how bad can it be? 

As far as getting help goes, if you need it, reach out and get it, it’s important. It’s really important that people try to have those conversations with their loved ones because if you think about what is your legacy, what are you going to leave behind? You don’t want to leave people behind wishing they’d spoken to you about something. We have it within our powers to have those conversations and I think we’ll all feel better for having them. 

This story may not be published elsewhere without express permission from St Helena Hospice.