St Helena has made me feel that I'm still worth something. I might be towards the end of my life, but I'm still worth something, and I'm still me and I'm still worth 100% of what I was before. Knowing that they're there and they want to be there, makes you feel special. It is as if they want to be there for you. The hospice may be full, but when they're with you, they're there just for you and you alone. And that's worth everything to think you are the most special person in their life at that precise moment.

To begin with I was referred through to the hospice by my GP and they came out to me, a lovely community nurse; they have nurses in the community that can come out and support people at home. They needed to get my pain under control to begin with and they managed to get me a bed in St Helena Hospice in Colchester and I went in for ten days originally but I liked it so much I stayed for five weeks!

Hospice

They did get my pain under control and managed to help me accept what was happening to me and spoke to me very openly. A lot of people think hospices are horrible places, they’re not. They speak openly about what is going to happen to you so you do know what to expect when it happens, and that's been invaluable to me that as things happen, if I get little pain, I know I'm going to get a little pain, but I know there's someone at the end of the phone that I can talk to and they can say, it’s alright, you can have another pain tablet.

The kitchen staff are lovely. The food is tremendous. I remember waking up one morning and I was talking to the woman in the opposite bed and I said oh what shall we have for breakfast this morning? Cornflakes, Weetabix, what shall we have? Bacon sandwiches? I tell you what, I really fancy a pancake. And they made us both pancakes, that was just completely ad hoc, off the menu, but nothing was too much trouble and we had beautiful pancakes. And the pinkies coming in to do the cleaning, they're lovely as well. They try not to disrupt you, but they come round and they say good morning and chat if you want to have a chat. But the same time if you're not in the mood for a chat, they don't push you, as they all are like that, it's at your pace, everything is at your pace. 

Nothing like I expected at all. I thought it would be more hospital like than it was. Because people are going in there and they know they may never get better, but they can always get better than what they are because the hospice is there to give you life for as long as life is there, and as long as you have life in your body. It's not like give it up or anything. It's very positive that life goes on. 

When I was coming home after my first visit to the hospice, I came home to a bed and commode, everything had been put in place. They had arranged a care package for me as well. They worked very hard with my family to make sure that everything they were doing would be what I want doing, would be how I'd like it, not just ‘good enough’ but something that would suit me. Bringing my family into the equation as well, including them in the bigger picture as well. It's not just about me, it’s about everyone that it affects around me as well.

I was home for about three or four weeks and then for some reason, and we still don't know to this day, I took a bit of a downturn for about a week before I was readmitted into the hospice, I was completely just receiving my care and there was no response from me at all, I can't remember anything about it at all. But they took me back into the hospice, I believe on a Saturday, and they were told we do think this could be end of life. But then on the Sunday, I wasn't as drowsy and they changed the medication. And then by the Tuesday I was sitting out in the garden drinking pina colada! 

So that's when I decided to name it, and some of the nurses had said it as well, that’s the hospice magic. To be in on a Saturday not knowing where you are or what you're doing, to on the Tuesday sitting out in the sunshine drinking a pina colada. Life doesn't get much better than that, I'll tell you!

When I came home from the hospice the second time, I was bedbound by then. I did ask if I could get up in a chair and because of the nature of my disease and the way the cancer has attacked my bones, I didn't think it was possible. But Laura the occupational therapist and Nicola the physiotherapy got me a hoist, they got me a chair just to see how I would manage in a chair. They got me into the chair and I had no pain at all so they were pleased with that.

So they said I could start getting out into the chair, but not to overdo it. You wouldn't think it would be so tiring getting out of a bed into a chair, but believe me, it is. And then from there I then asked, what do you think the chances are of getting in a wheelchair and maybe going out to fresh air, as I hadn’t had any fresh air since June.

Choices and plans for the future

With regards to the future, I have thought about it so much so that when I went into the hospice the first time like everybody else, I thought, this is the end. So I rung my sister up the next day planning my funeral, that was because I thought I was going to die in three days.

I don't know how long my prognosis is, but in a way it's given me a chance because I'm quite open about fact that. Yes, I know what the outcome is going to be. I have had the wonderful opportunity to organise my funeral; I wanted to make sure they played the right music and have my after show party somewhere nice that I would have liked it, even though I'm not going to be there. I’m not having a wake, I’m having an after show party. I decided I wasn't going to have a wake, I'm having an after show party where music that I like will be played and it'll be as if I'm there, and I will be in spirit, I tell you, with a pina colada in my hand! 

So with regard to my future, don’t know how long it is, but it's made more bearable knowing that I've got the hospice. I know plans don't always go the way that you want, but my plan is to go back to the hospice when the end is near because I don't want to die home. I want to actually die in the hospice because it's such a lovely place. 

I think it's nice that everybody, and I know a lot of people don't get the chance, but for me personally, having that chance to actually have a think about the future and what little future I've got and what I can do about the future that's still going to involve me, that I've still got control over. I'm happy about that and I talk quite openly about it with my family. Some accept it sometime, some don’t. 

St Helena supports me, but they've also been a good support to my family. Some have taken up the counselling, some have decided not to. I've recently taken up counselling because I felt it was something I wanted to do now, it may still not work for me, but it's something I feel I've got to bring into me at the moment. I talk to my family openly but there's only so much you can say to them and vice versa. They all know that the hospice is there for them as well, so that sometimes they might need a bit of respite, not just from me, but from each other otherwise all they want to talk about is me. And as much as it is a wonderful subject, they need to talk to other people, talk to their siblings and nephews and nieces about other things as well. So if they've got someone that they can talk to, who can listen to all their scares, their fears, then that's nice as well. And they've got that at the hospice and they have been supporting them.

Every decision that's made, although it's ultimately mine, I know the hospice do include my family with it because that's what I want.

Am I scared? No. If I think about it too long, I can make myself scared. But I think everyone would be like that because you’re going into the unknown. As long as you're honest with yourself and I'm under no illusions that probably this time next year, I won’t be here. I give myself little time goals, so I had my birthday, then had Christmas, then the King's coronation, then after that, it'll probably be the Clacton airshow, which I think I'll be able to go down the beach in my new wheelchair and watch it. 

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