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With love from Daisy

Patient story

At 28 years old and with a non-cancer diagnosis, Daisy Murfin knew she broke the stereotype of a hospice patient.

There can be a perception among people who have not experienced it, that a hospice is a sad building where everyone looks desperately ill and where people go to die. That had been Daisy’s reaction too when a short spell staying at the hospice to manage her medication was suggested by her hospice in the home team, but the smiles from the nurses, the friendly volunteers and the homemade food was enough to convince Daisy and her family and friends, that it was to be embraced.

Having stayed at the hospice twice and then back home again with expert support from her hospice clinical nurse specialist, Daisy is testament to the fact that more than 90% of the support provided by St Helena is in people's own homes, so they receive the care they need where they want it, and with SinglePoint on the end of the phone 24/7, when they need it.

Daisy died at home in March, surrounded by the people she loved. She wanted to dispel the myths about hospice care and to raise awareness about the difference St Helena Hospice made to her and her family at home and at the hospice. This is Daisy’s story…

The support from St Helena Hospice, it’s just been life changing and I am so grateful that I am where I am, and I'm able to enjoy what I can for as long as I can.

It's all we can do because you don't know how good the hospice is until you need it, and I think that's a shame. So I want to do what I can to make sure that people know how amazing the people are that work there and what it's all about. They are helping me have a better quality of life and to enjoy my life.

The thing is, the hospice, everyone thinks it's an elderly thing so I'm really thrilled that my picture can be used because it might cause people to stop and click a bit more because they're like this a young person, what's this about?

And the hospice is not about just going somewhere to die. It's so much more than that. That's the message that I'm really excited to get across, that it's really not just an end of life place, it's so much more than that.

The decision

I had many, many complications with my health my whole life and it was diagnosis of diagnosis of diagnosis. I have renal failure and so many different problems along the way; things like diabetes, lupus, celiac disease, thyroid problems, just anything that you could think of came my way.

I've had really good support my whole life and people teaching me to keep positive, keep moving forward and I can get through anything; and up to last year, I could. I did everything I could possibly do.

But then I was told that I'll never walk again, I would be blind mostly, because I only have 6% vision. Then on the day of the operation, and when I made my decision, they made a diagnosis and the outcome ended up that I would never be able to eat food again. I'd have to have a line in and be fed through a tube, which if you know me, I love food! So I made the decision to not continue because I was supposed to have six more operations as well as not being able to eat which, I mean, if you were in my position…

Because of all of my comorbidities, nobody could guarantee me that if I did dialysis and the transplant that I would end up having a longer life. It might just be that I have these operations and I live for all of that pain, to have to go to the hospice and die out my last days anyway. So, I just said, you know what, I'm going to let my body do what it's naturally meant to do and I'm going to have palliative care for as long as possible and have quality of life at the end of my life, and not have to go through lots more procedures and operations, because I've done a lifetime of that. My life has been a lot of hospital visits, operations and I'm just… I'm tired now and I just want to let my body do its natural thing and be as natural as possible, and it will happen when it's supposed to.

The gift of time is the gift that keeps on giving at the moment. All my friends just give me their time and that's all I can ask for, because it's memories and time spent with people I love, and it's really helping me stay positive, being surrounded by positivity.

Before I needed the hospice, my view was, you probably only went in for four days and you were dead at the end, so I didn't realise that they did the rehabilitation and support along the way for you and your family. I think that it's really important that my family are getting supported because they're going through this just as much as me. I am confident to know that I am very supported, and it's all about the quality of life. It's about how much I can enjoy life, which is really positive.

At home

So I made my decision. I now have a hospice clinical nurse specialist, a CNS, Di Turner, who is my queen! She manages everything and has taken the health management and stress completely out of my family's hands so they have time to spend with me. That is a gift I'll never be able to repay, that they've freed up the people I love to be able to spend time with me.

It's now nice that I'm free to just live my life and spend quality time with my family and I can eat myself to death! I can eat what I want and make the absolute most of the time that I've got, because you never really know how long you've got. Now the hospice are involved and helping with my care, it's just easier to focus on the positive things and carry on moving as forward as I can.

When I first met Di she came round with a doctor, who was also lovely. I'd spoken to Di on the phone and she explained the situation that she'd be popping around to the house and she explained what a CNS was. At that point, I wasn't overwhelmed but I was like ohh, I feel OK, I don't need a support nurse, like what you talking about? I'm 27, I've got enough friends, I don't need another one. That was my attitude before meeting her.

It was quite a sore subject for my mum at the beginning; she couldn't say my name without crying. Di picked up on that and what affected me was that Di straight away went and supported my mum as well, and I'd never had that. Somebody from a professional medical point of view be in the house to support me, but also actually support my mum. Di checked my mum's OK, chatted to me about my medication and what my future looks like, what my goals are, and just didn't faff. She was straight to the point, really clear and everything that she said she was going to do, she did within a couple of days.

So I completely changed my mind and was so comfortable when I'd met Di. She is so just like a fairy godmother that just comes in, listens, makes it all OK, tells you to get over yourself when you're stressing about things that you don't need to stress about, which I do. She is straight to the point and honest and the most important thing is, she does what she says, and she communicates to say that she's done things and organised things that you need. That takes it away from me and my family and just makes it easier to just breathe and just be a family.

It's the same with SinglePoint. It’s the same people that usually come and you get to know them, which is nice because you have that continuation.

At the hospice

When they suggested I go into the hospice for a bit, I was terrified. I kind of thought that they would come in, tell me, I don't know, you've got like four weeks to live and we're going to give you this medication and that's that. I thought it was going to be not very personal. I thought it was going to be quite clinical, but the hospice are a bit like a family.

I had visited the hospice for work before but never thought about myself needing the hospice. When I was first told that I needed to be a user, it did upset me because I had the views that you go there to die and you don't come out. So it was quite a big decision for me to even agree to go into the hospice, but once I did, I knew it was the right one because I made so many friends in the hospice. I love them all.

Everyone that visited me said they're surprised how light and airy and kind it is, and all left feeling… not happy that I was there, but feeling OK that I was in a safe place. I think people do need to know that you can come in and go out again.

It's just all about what's best for you and you kind of steer the train. I think that's important because everyone will get to know me and how I am before I get to my expiry. They’ll know what I like and then I know that we'll be as comfortable as possible for as long as possible.

The complementary therapies are amazing. At the moment, my favourite is reflexology because I've got fluid retention in my feet so I can visibly see it's working. There's actually a difference when the massage is done because my feet get quite tight and sore and once my feet are massaged, I can go for a little walk and not feel any pain. I've been living like this for two years, so it's nice to have those moments of pain free because you forget what it's like.

And the food… it's like last week, I had cravings and I was really craving fish and chips so of course they made fish and chips happen! To eat the food that you've craved and to have that satisfaction again was amazing.

You have a choice of food to eat and it's all freshly prepared and it's so nice to have a choice because I'm gluten free. I can wake up and decide to have dippy eggs and toast or scrambled eggs or anything, and the kitchen makes it happen. It's amazing. And the ice cream machine…!

Just how seamless my transition was from not being a patient at the hospice to being welcomed in and feeling like one of the family within 24 hours. I’d been home for a couple of days and went back and nurses who have been working really hard all day with other patients took time out of their day to come in and have a chat with me and tell me how nice it is to see me. It makes you feel so valued and cared for and you don't feel like a loose piece of furniture.

My brother Freddie, he is 23 so he is 4 years younger than me but he is a whole foot taller than me, he spent 10 hours with me one Sunday. We watched a lot of films and just had some quality chats and time together, which was really nice. We went into the kitchen and had a roast dinner together. And then we went back in my room and we watched films together.

It was a real change for my mum because my mum was able to actually relax. At the hospice we could have dinner together and be my mum. She's just my mum now; she doesn't have to be the nurse, the cook, the carer. She's just mum and that's really the best thing.

Image: Daisy with nurse Beth at the hospice

Image: Daisy in the Hospice having reflexology

Image: Daisy in the Hospice eating chips

Thoughts on death and dying

St Helena as a whole makes you feel like you are part of the family and it's really comforting because I feel like my mum will be left and Ade and Freddie will be left, in a family unit, and have all the support they need when it happens, which is really comforting to me because that was one of my stresses about when I go, how bad is it going to be?

It makes me know that when it does eventually happen, my mum, Freddie and Ade will be taken care of as well. I think nobody ever realises that when you are the one dying, you worry a lot about what you're going to leave behind and you worry about upsetting everyone. Obviously you're going to leave a hole that's never going to be filled, but it's nice to know that there's bereavement counselling, I'm happy to know that people will be taking care of my family even after I can't. That's quite a big thing because I don't have to have that stress.

I've never planned for a mortgage or anything like that. I have a pension but I wasn't that bothered about it because I realistically knew I wouldn't need it. Because I have lots of conditions, I've always been prepared for what’s to happen and I think at the moment, because of the hardships that I've been through in the recent two years, I'm more just needing a rest. I think I see death as a long sleep and I think the only thing that would scare me, is that it will hurt. I spoke to the nurses about that and they have said pretty much that they will do everything that they can possibly do to make sure that doesn't happen. So I feel quite confident in that and there is a lot of pain medication, and even the reflexology and things like that relaxes you so you can be calm.

But as far as actually dying, I'm not actually worried because it's always been on the cards. I've had a lot of history with medical things. I think my mum’s had to plan two funerals potentially for me, so it's never been like, what do you mean I'm going to die? It's always like, OK, here's the next date to outlive!

St Helena has helped me along my way in supporting me and also things like providing counselling. It's little things like that, that go such a long way, because if you change your mindset around these things, you become open to talking to your family more and doing more. You hear about the hospice and you throw it away, get nervous and think it's just about dying, and it's actually not.

They're really good at having difficult conversations, because I have to talk about dying, I have to talk about death and I need to have those conversations. But they make it easy because they're so caring and it makes it comfortable so that when I talk to my mum or my brother or anyone about it, it's kind of opening the door to make that conversation OK.

I am a cold person and I'm obsessed with fire, always touching fire, always getting burnt, always covered in burns. So I would like to be cremated and the song that is my funeral song is Burning Love, Elvis Presley, but it's the Royal Symphany Harmonic orchestra version, with all the violins, and then his voice on top, Burning Love.

Life changing difference

My mum was working full time and nursing me and we didn't have any support before I switched to palliative care, and now we have loads of support. It's nice that my mum can be my mum again and not be a carer. I got to the point where she'd walk in the room and I'd be like, are you Lynda the carer or are you coming in as mum the mummy? Lynda the carer was clearing up after me, having to do all these injections, and wake me up and force me to take medications; she was a great career because she's a very caring person but it was stressful. Now she's back to being mummy all the time and she comes in and does the mum stuff. She can have that break where she can go and have a long hot bath and not feel guilty, and know that I'm OK because we've got all the support in place that we need.

My mum's birthday is going to be her last birthday with me and I'm going to miss all the milestones so my goal is to celebrate everything I possibly can as big as I can. The hospice are very encouraging and are there to support me and help with what I need and source things that I could never even imagine. They make miracles happen and they are making it so easy to have magical memories with my mum, with my dad Ade, with Freddie my brother, and just really keep me positive.

It's just little things like that make a huge difference and are so needed because, yes, you're tired towards the end of life, yes you're worn out, but you're fired because you know that you've only got a limited amount of time, so you do make decisions a little bit differently. It's amazing that the hospice understand and know that, listen, guide as much as they can, and lastly are always, always there. I have never, ever not been answered or helped by the hospice or SinglePoint when I need it, and that is amazing.

It's amazing the hospice have taken the management off my mum and she can be my mum again. She's not my nurse, she's not my carer, she's not doing anything apart from loving me, enjoying my time, and just being with me, and you just can't put a price on that. It's amazing.

The hospice can do so much for so many people. They are just so good at what they do. they know what they doing, and you don't have to ask for much, it's just there. I for one am just so happy that the hospice is still here today and I really do hope that people in the future do see it as a place to go to for help, peace, serenity, support, not just end of life, because it's so much more than that.

Daisy's mum, Lynda, shares her story

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

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With love from Daisy