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It is a myth that every patient who stays on our Inpatient Unit are at the end of their life. Patients come for various reasons including getting their medication under control.
We spent a lovely afternoon with Sarah, aged 51 years old, on our Inpatient Unit. She kindly shared her story:
How have you found the Hospice experience?
Now that we’ve got used to each other and I’ve stopped trying to push them away, it’s just all jelled really nicely.
Why did you push them away in the first place?
Well, it was like I was coming here to die and I’m nowhere near ready to die. So, two years ago I was given six months to pancreatic cancer and most patients who are given six months to pancreatic cancer are dead within six weeks. I’m still here two years later.
What do you think is the difference? Why do you think that you’re still here?
I haven’t got a clue! I really don’t know why. And they’re normally in pain as well. So, when I started to get pain six months ago, I thought, “Oh gosh, maybe I wasn’t as lucky as I thought I was” – like I said to my Pastor (because I go to church).
The other day they (friends from Church) sat there laughing at me and I said, “Why are you laughing at me?” it was because I literally turned around and said “I’m the luckiest person in the world”, and then they said, “You’re not because you’ve got cancer.” I meant I’m the luckiest person in the world still to be alive now and I don’t know why, I really don’t know why I am. But I am, so getting pain and having to come here was a bit like, “Oh god, maybe I’m not so lucky, I am dying after all”. Of course, I know I’m dying but because I have five children I want to keep going.”
How old are your children?
So, the oldest is 26, then 21, but the 26 will be 27 soon, and then I’ve got a 15 that’s turning 16, a 14 and a 12 that’s turning 13. And that’s another thing: I’m really, really lucky that I literally only live around the corner from the Hospice, so I can go home for a visit. So, this is where the difference is.
I go home every single day from 4.30pm until 10 o’clock at night-time to see my children. I’m on morphine via a syringe [which makes it possible and the dose can be controlled]. There’s me that has actually brought down [the dose] of my own medicine. I told them to reduce it because I was slipping into being asleep all day long and I didn’t like it, and medicine was making me do it, and I didn’t need that much medicine. So, I brought it down. It’s because of my kids.
So, what difference has the Hospice made to you?
So, I was fighting against it saying I didn’t want to be here because they were talking as if I would never go home which is true – I probably will never go home from here now, not to go back permanently. We’ve got a perfect harmony now where this is my second home. So, I go from one place to the other place.
Also, it’s really beneficial because my children were struggling. Of course, they’re still struggling but you can see it’s levelled out. They’ve not got the pressure of me there now, but I do go home to see them every day and they’re more grateful to see me and stuff like that.
What support are the children getting?
They get support from the school, from Young Carers and Centre 33. Centre 33 is amazing. So, they have a young carer, a lady there called Abbie. First, she was with one of them but she’s just jelled with all of them and that’s also helped them. They went down to 22% attendance, all of them. Since they’ve been back in September, they have gone to normal classes with all the children doing normal lessons and they all have 99% attendance which is absolutely amazing! And that shows how stable they’ve become.
What’s Alex, the Social Worker, been doing with you and all the family?
She’s just been supporting me. I mean, I’ve known Alex for a while, but she’s just been there looking in the avenues of things that I can’t probably access. So, going to find out what I can get, where she says things to other people for me.
Like a mediator?
Yeah, yeah, it is relaying isn’t it? Relaying information. Alex has been useful. She’s helped me get my house sorted, help me access charities. She’s helped me do a lot and she’s enabled me to do things with the kids and help the children.
So, has it given you all a bit of peace of mind and a bit of confidence in the system?
Well, she’s taking away all the stress from me as in stuff that I probably wouldn’t able to do myself and she’s fought higher up as in I’m a little person whereas everyone that works for the council, you’ve got more power when you’re talking to people in the council and things like that. So, she’s achieved more in that way than what I ever could.
So, you feel like she’s been your voice then, for certain things?
Yeah, and that has then taken that off my mind so I can breathe, and I can be focused on the children or do things that needed to be done that otherwise would’ve been pushed because I’d have to worry about these things.
So, when you heard the word ‘hospice’, was what you imagined and what is the real thing, were they different?
It is a brilliant place. All the nurses are brilliant. Once you jell we have perfect harmony. So, yeah, everyone here is absolutely amazing and absolutely brilliant. Did take a while at first I was probably fighting against everyone and then getting to know people and now they all know me. I can go and see my friends and stuff because I’m having trouble sleeping. Literally, I can do what I like. Yes, it is like a second home and we have a mutual understanding.
No, everyone thinks a hospice is where you come and die. Although, you see, maybe I didn’t because I knew it wasn’t where I was coming to die straight away but maybe I did because that’s why I was pushing them away.
Yeah, I will push and push and push and push myself until I can’t push myself anymore.
What do you like best about it?
Everyone here, probably and plus, my own little sanctuary, my own little room and my garden outside and my telly. At first, once you get to the idea that you are not abandoning your children, it’s actually quite nice. It’s quite nice to have your own space. It’s quite nice not to have to worry about them, it really, really is.
Do you think that the children seen a difference in you since you’ve been here?
Maybe, yeah, maybe. I think it’s ‘cause they haven’t got to worry about me. They know I’m here, they know they can get in touch if they need me. They know that I’m alright so now they haven’t got the stress of me being there, having to worry about me when they come home from school, having to worry if I’m okay, having to worry that they’ve got to do anything for me. They come home, they just chuck their stuff on the floor, leave it in the mess like they can and then go round and play with their friends, not that they should leave the house in a mess, they should do their chores but they’re not. But the main thing is they’re being children.
So they’re not worrying about your care because somebody else is doing that. So, they’re not having to take on that?
Yeah, they’re just being kids and I need them to be children to keep staying at school and they’re doing very well. So, their mind’s free now, basically and not stressing them. They’re pressure-free so now they can go and be children, learn their things that they’re meant to learn and let them be free. I’m letting them live, which is a good, it’s a very hard thing to do but it’s a very good motherly thing to do.
Perhaps you’re learning to rest which is not a bad thing, is it? Everybody needs some down time, don’t they?
Yes, they do.
The Charity would like to thank Sarah for sharing her honest and heartfelt story.
If you would like to find out more about the Hospice experience please find out more at our Hospice Open Days.