Text Size

a a

Living in the moment

Lynda Conway, mum of 28 year old Daisy, shares what hospice care means to her family...

I don't think about what life will be like without Daisy because I know it would be unbearable. So I don't think about it. I will deal with that when that comes along. Right now, we're just enjoying the time that we have and I think if I worry about what my life's going to look like and her brother's life's going to look like and her dad's life… if I think about that, then I wouldn't be able to enjoy the moment. I'd be worrying all of the time. So I don't. I'll deal with it on the other side. And that's the best I can do.

That's all we can do. It makes our time happier and I think if I've learned nothing else, it's living in the moment makes things so much more bearable, less anxiety inducing and just pleasant, so I don't go too far forward.

The decision

My daughter made a decision last year that she wanted to go down the palliative care route rather than have the numerous surgeries that she was facing to prolong her life for a short time. She thought she'd rather not go through all of that and have quality rather than quantity of life. And it was a huge shock… but we support her decision because it's her life and she's had quite a difficult time.

She has so many different comorbidities, which individually would be OK, but because she has so many, that's what's ending her life because one battles the other.

She made the decision and then she was referred to the hospice. For us I didn't realise what a gift that would be to us, that Daisy almost gave us, because things just became a lot more easier. Before she was under the hospice team, under palliative care we had to organise everything, we would be almost like chickens with no heads running here, there and everywhere. There was one month where she had 30 hospital appointments and they were in Ipswich, Cambridge, London, Colchester, and me and my husband both work, her brother works. It was very, very difficult to manage and understand what was going on because the communication between everybody wasn't there. 

As soon as we were with the hospice, our hospice nurse, Di, took over all of that. She coordinates everything. She's the link between all of the consultants and the specialists and we don't have to do that. So the time that we spent running around is now free time to spend with our child while we have her. 

Image: Daisy and Lynda

So for us, that choice that Daisy made, although it's a devastating choice and it's really hard, it was the right choice for her, and the knock on effect is that it was definitely the right choice for our family. Now the time we spend is peaceful and it's calm and it's not stressful and we haven't got that anxiety or worry about how are we going to get her here and how can we move her there? She was blind at the time and she was terrified and we'd be waiting for hours in very busy corridors, and she couldn't see what was going on but she could hear and the noise for her was deafening. And she was so frightened. She's such a little thing, a big brave thing, but a little thing. 

I look back and I think I really understand why she made that decision. I hate it, because I want her to be in my life forever. I wanted to see her get married and have children and do all the things that you expect to do with your daughter.

When Daisy first made her decision I was obviously devastated and I kept thinking, oh is this going to be our last this? Will she be here at Christmas? It's really hard and I was just running ahead all the time in my mind. Now I've kind of learned to live in the moment, I don't think too far ahead. We have each day and we live it as we live it. We don't really make any plans anymore. We just wake up and then we do our day and then we go to bed and we do the same the next day. 

Hospice at home

Di Turner is our clinical nurse specialist and when she first turned up at our house, she turned up with a doctor, and she came in and Daisy was saying ‘it's a really unfortunate name, isn't it, that you've got there Di, because I'm dying and you’re called Di!’ And it just made us all laugh. 

I couldn't quite believe that one person was going to take everything that we've been trying to manage and understand. She just took it all and she will talk it back to you. So for example, Daisy’s on a syringe driver and Di arranged for us to get a month supply at a time instead of the 10 days’ worth of medication we had before. It's just those little things that make a huge, huge difference, because that for me means in my lunch hour I can sit with my daughter and have lunch with her. I'm not queuing up in the pharmacy or waiting to get her medication every week, so it just gives us time back. 

Di is she's so nice. She's so funny. She's so caring. But more importantly, she gets Daisy. She really understands where she comes from. She really is a gift. I can't express it any other way. She is an amazing woman and she does exactly what she says she's going to do and that's what we need. Di just goes off and does it, and it’s golden. Unless you're living it, you'll never understand the difference that makes, and it really makes a huge difference, massive.

When we had to move her downstairs, I hated it. I absolutely hated it, and I wouldn't let anybody close the doors because I thought we were locking her away, it was really difficult. When they get to that stage where they can no longer go up the stairs, it is heartbreaking. When we moved her downstairs, in my head I thought we're not going to come back from this this time. This time she's not going back upstairs again. Things will not go back to normal. She won't go back to work. She won't go out partying with her friends. She won't finish taking her driving lessons or pass a test. She won't. It was all those won'ts.

Image: Daisy and Lynda

It was really difficult, but now I quite like having her in there. I keep the door open and I can sit and chat to her, and if I'm reading or watching some rubbish on the telly, generally it just makes her more accessible now. If we've got friends over and we're having dinner, they'll pop in and see her, and then we'll sit with the doors open so she feels that she's a part of the conversation. 

We’ve used SinglePoint service quite a few times when we first came under the hospice, Daisy was sick often and she wasn't on a syringe driver then she was having injections and medication. Ross, we love him, Ross would come out and inject her, and there was a couple of others that came out, but Ross really sticks in my head because I think he was the one that convinced Daisy that she needed to actually go into the hospice. Daisy didn't want to go into the hospice because she thought she was going in there to die and it took quite a lot for her to give in and say yes, OK, but he convinced her to go in and obviously she's home now. 

I have called SinglePoint a couple of times, it's never a faff, it's never a big deal, they just crack on and do it. Again, they do what they say they're going to do and they're always there, it doesn't matter when you phone them. They're knowledgeable, they know what they're talking about and it's just nice that you feel safe. SinglePoint just seem to know what they need to know and if they don't know, they'll toddle off and then they'll call you back. And they always call you back. So it's great. I really like it. I can make a phone call and someone will come, it's life changing.


When Daisy first went to stay at the hospice I think I was relieved. I worried obviously because I like to be with her. I didn't like the idea of her being somewhere on her own. And I think because her vision was so poor at the time and it worried me because she couldn't see who was coming into the room. I was quite worried about that, how she would cope. But they gave her a lovely little room and people always knocked and introduced themselves, so she would know who was there. 

I think the first time she went into the hospice, she was there for maybe a week or so. The second time she was in for about 10 weeks, quite a long time. The first time I wasn't like Daisy thinking she's not coming home because I knew she would be coming home. I was happy in a way, because Ross had said what we want to do is get in front of this and the only way we can do it is to try out different things and monitor it in the hospice and then she can come home. So I was quite like, yeah, this is really good. 

There were things like I could sleep there if I wanted to, and I'd leave work at lunchtime and go and have lunch with her every day. She got along with everybody that was there. Harry in the kitchen, she really liked him and he's quite young so they'd have like, chats together. And then she had the cat and lots of dogs came to visit her and it was really nice. 

When they first put her on the syringe driver, she had a real burst of energy and her friends would come to visit and that hadn't happened for a long time because she was just sick continually so she couldn't really have conversations with her friends or catch up, so for her that was brilliant. She saw quite a lot of her friends in the hospice, and it was really nice. I was anxious, obviously, because of her sight, but I wasn't at any point thinking she's not coming home. It's like a very quiet hospital ward with individual rooms and it's lovely.

The biggest thing for me, is that fear had gone. It’s so impactful, it's just made such a difference to all of our lives. Everyone's available all of the time. It's just so different, so very, very different. Nobody, and I know that they're all busy there, but nobody makes you feel that they're too busy for you. It's an incredible setup.

I think for me when she was in the hospice, I've never felt so peaceful and certain that she's in safe hands. When we went there and I felt that we had the space to be. I wasn’t scared of leaving her there. I know that when I walked out that door, she was completely in safe hands. I had no worries whatsoever. The nurses, the whole staff team actually, are just amazing. I just feel they're so resilient as a group of people anyway, but the way they connected with Daisy, the way they spoke to Daisy, the way they give you their time. They just seem to understand what living grief is and they give you the space to manage it, but they're there if you need someone to talk to. I just think that place is golden. 

The difference

I just can't express enough what a difference to our lives the hospice team have made as a whole. I couldn't even put it into words how different our lives are now to where they were before she made the decision. It's like peace. Peace. And that's what we needed because it was chaos, it was absolute chaos, and now it's calm and that's what we all need.

I used to cry about 30 times a day. I used to wake up crying. I used to go to bed crying. I used to cry driving the car. I've just been the biggest crier on Earth. I'm surprised I don't look like a prune with all the water that's leaked out of my eyes. But I don't cry so much now because it's all just a bit more organised. It was a combination of the chaos of it trying to organise everything and trying to keep her safe. Doing all of the everything and working. 

And then the hospice came in, smoothed all that over, got careers in so we have carers coming in four times a day, the district nurses come in every day, so it kind of takes the pressure off. Before I wasn't very good. I’d keep smiling at everybody and go yeah, I'm fine, and inside I'd be shattered, break into a million pieces. 

I think sometimes you get so caught up in what's happening and the fear of it, you don't get the opportunity to pause and think. We were just running, and now we've slowed down and it's just nice because we're on this journey, and it's a hideous journey but we are supported on that journey. There's an awful lot to be said for that. 

Image: Daisy and Lynda

We’re not trying to fight our way through anymore. It's like we've left the raging sea and we're on a very serendipitous, lovely, stream that's bubbling away; we're on a lazy river now.

I would do anything for St Helena Hospice. They have changed my life. Completely.

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


Related news and stories


I would bubble up without counselling

After her dad died earlier this year, 12 year old Grace and her younger sister Rose continued counselling with St Helena so they could talk about how they feel.

View more

We just clicked

Naomi and Georgina met in a nightclub and hit it off straight away, falling in love and announcing their engagement a year later. Then a month before their planned wedding, Naomi was diagnosed with incurable bowel cancer, and then the country went into lockdown.

View more

Untold help and advice

After we supported ‘A’, his wife wanted to help reassure people who may be in need of support from St Helena too.

View more

Running for Mandy

Anna is training to run the Chelmsford marathon proudly wearing a St Helena vest embellished with the name of her friend Mandy who is receiving treatment for cancer. Anna’s own condition, functional neurological disorder, makes it an extra personal challenge.

View more

We listened to mum's wishes

Josephine Gunnee made sure she grasped every opportunity, and being diagnosed with a rare cancer didn’t stop her from going out with friends and spending time with her family

View more

He held mum's hand all night

Charlotte was delighted when she was told her mum, Marina, was going to be moved to the hospice. Despite having never been to a hospice before, she knew her mum was going to be cared for in a relaxed and homely environment

View more

Virtual Ward was invaluable

Christmas ended abruptly for Hazel Forster last year when her husband of 46 years was rushed to hospital after collapsing with a suspected stroke on Christmas Day.

View more

I have never felt so much love and compassion from complete strangers

In May, Louise Lovesey had to say goodbye to her sister, Claire Appleby, who had been living with cancer. A keen cyclist and runner, Louise was training for the Prudential Ride London 100 mile cycle to raise money for St Helena Hospice.

View more
Go to basket

Go to basket