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The jelly and the cup of tea

Family story Hospice Hospice in the Home

Julie Lewarne had been experiencing back and stomach ache for a few weeks before she was diagnosed unexpectedly with colon cancer spreading to her liver and lung. Julie died at St Helena Hospice three weeks later.

Julie was well-known in her home seaside town of Walton on the Naze, and a respected funeral director with her family’s firm, PG Oxley. Returning for the first time to the hospice where her big sister spent two weeks before she died in May 2023, Sue Barrow sits in the garden and shares their story…

Speech mark I felt like I was swimming in mud. It was the early May bank holiday and I couldn't help her anymore. She'd been quite poorly with back ache and stomach ache and she couldn't eat. All she'd got for the pain was ibuprofen and paracetamol and a wheat thing you put in the microwave. I'd got a card from the colon nurse, who had said if we get in a muddle to phone them. That's how I knew about SinglePoint. So on the Sunday I phoned and spoke to a lovely lady and I can remember saying I don't know what to do and she said 'well, just tell me a little bit about what you think you need'. And I did and we got a phone call back, and they said if you need us again, just ring.

They're so helpful that you don't need to worry about picking up the phone to SinglePoint because you feel like as soon as you speak to them, you know they're on top of it, they make you feel that it's fine. I can remember saying, I'm really sorry to ring you, and she said 'that's what we're here for', and I thought, right, lovely, you'll do me then.

On the bank holiday Monday I phoned again and they sent a wonderful nurse to us, Andrea. As soon as she walked in the door, my brother and I, and even Jue, could see that everybody felt better just from her walking in. Andrea was so lovely. She’d got a big smile and it was the way she interacted with Jue just by saying, 'well, I think there's something we can do here, we're going to get this pain sorted out' and she immediately got some painkillers. I just thought ohh, you're like a little Angel in blue. Just her being there, my sister felt so much better.

Image: Julie who died at St Helena Hospice three weeks after colon cancer diagnosis, pictured with her dog in the garden

Julie in her garden with her niece's dog

Andrea said 'I think we need to get on top of this pain, what are you taking?' And we said ibuprofen and paracetamol and she said 'I think we can do better than that!' She got on the phone and she said the ambulance would be there tomorrow morning at 8 o’clock to take Jue to the hospice to sort out the pain, and it was. The next time I saw her, Jue was like a different lady.

We spent the rest of the day getting her ready to go in. She was frightened, but she also just wanted to get here because she knew that once she got here, she wouldn't be coming home.

It really has been a real eye opener for me how wonderful they all were at the hospice, everybody. When Jue went in, she didn't really fancy any foods, but she used to love a jelly so every day there was a jelly there for Jue; blackcurrant, orange, strawberry. It’s the little touches. The lovely lady that cooked used to come into the ward every day and say 'morning Julie, what flavour jelly would you like?' I mean that's a big deal, it might not sound much, but it’s these things that make a difference.

The other lovely thing is patients’ families can go and make tea and coffee or eat together in the dining room. Well, that's lovely too, such a little thing but you can all be together.

When we saw the consultant before the diagnosis, Jue said to me 'whatever this is, it's got a hold of me and it's not going to let go'. And I said probably not, because we never told each other fibs, and that's how it was left. I stayed with her most nights before she came into the hospice, I just looked out for her, same as she did for me. My mum died when I was 20 and I’d just had my first baby, who's now 52, and Jue was wonderful helping me as well as looking after her son Robert with her husband Jack. I've got four girls and my girls say they couldn't have had a nicer and better aunt. We included her in everything always, and she just was amazing.

Before she came in, she was in excruciating pain, it really was horrific. At the hospice Julie kept saying, just being there made her feel so much better because she wasn’t in any pain anymore, she was so comfortable there. My brother brought her out into the hospice garden in the wheelchair and they sat there together listening to the birds. I just feel that she was never let down here, ever.

All my girls and my grandchildren came up to see her and it was really lovely, just everybody's looked out for, it's not just the patient, it goes out round to the family as well. We're all included, so it's nice. It's a lovely place to be.

Sisters Julie and Sue

Then I got the phone call to say Julie's breathing has changed. So I shot out and came straight up to the hospice. I knew this was it. There was this lovely, lovely nurse who was sitting there holding her hand. The first thing she said was 'would you like a cup of tea?' In my eye, it never has been the big things with me, it's those little ridiculous things that people would really not notice, like the jelly and the cup of tea.

My brother and I sat with her and it was so lovely. She was in a garden room and because the doors were open into the garden, we could hear the birds and that's the last thing she heard; she loved the birds.

After she'd died, a nurse said what would happen and what they would do while we went and had a cup of tea. Then I went back in to say goodbye to her, and this is something else, they'd laid her down in the bed with a pillow under her head and she looked lovely. She had a crocheted blanket over her and she looked like she was asleep, it was brilliant. So my last vision of her is asleep with her lovely crochet blanket, and it was blue and she loved blue, although I don’t think they knew that. It was wonderful. It was the loveliest death anybody could ever have.

Eight weeks start to finish, I think that's the thing, it was too quick to take in really. I don't get upset as such, I do if I talk about her a lot, but I don't get upset in that sense, I just feel cheated because she was fitter than me, she could walk further than me, she was suppler than me, she did yoga. She really was something else, and it just took her so quickly.

It's actually lovely coming back here to the hospice. I wasn't dreading it, that's not the right word; I’d wondered how I'd react being back, but it's been lovely. Julie was really happy here, she even petted a donkey at one point, which I never thought would happen!

For a lot of people it can be quite disconcerting to come here, but I suppose because I've always been around death because of the family funeral directors firm, so for me it wasn't so bad. There's nothing actually scary about the hospice because everybody's so friendly. It's not that they're not busy, but they always seem to have time for you. Coming back today has actually been quite cathartic. Even the nice ladies on the reception, it’s just having somebody nice to greet you. Everything about this place, although it's incredibly professional and beautifully done, you just get the feeling of being enveloped, even just walking in the front door.

I’m happy to say what it was like for us at the hospice because Julie was a real person. I don't want her to be just somebody, because she was my sister.

Image: Julie with a visiting donkey at St Helena Hospice

Julie with donkey at St Helena Hospice

Image: Sue and family walking St Helena Hospice Pier to Pier in memory of Julie

Family walked Pier to Pier for Julie

Sue in the garden at St Helena Hospice

Julie, Sue and family

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

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The jelly and the cup of tea