Writing your own ending – Julia’s story

What comes to mind when you think of ‘end of life planning?’ It could be finances, family, medical care, or funeral wishes. However, what many don’t consider is that end of life planning can also be thinking about how we want to be remembered, and more importantly, what matters most in our final days.

We recently chatted to Julia during her stay on the Inpatient Unit (IPU), where she shared the incredible plans she’s made, her experience with Dorothy House, and how she’s making the most out of the time she has left.

Eight years ago, Julia was diagnosed with breast cancer after a growth was found during a benign cyst removal. After several treatments including chemotherapy, radiotherapy and removal of her lymph nodes, Julia had what she described as a ‘very healthy, un-cancer life for about six years.’ Around 18 months ago, she found herself experiencing abdominal pain and it was discovered that her cancer was terminal, having spread to other areas of her body. Referred by her GP to Dorothy House, Julia came to stay on our Inpatient Unit to have her needs and pain levels assessed.

Coming to Dorothy House

It’s not uncommon for people to see hospices as sad, or even scary places, and Julia’s views were similar before she came to Dorothy House. Her first visit to the Hospice wasn’t as a patient, but as a visitor to a close friend who was receiving end of life care with us.

“I was very afraid of the idea of a hospice. I thought it would be a very scary place, full of lots of people who were upset. I thought there would be a smell, a look and feel, a building that’s bit old and run down. The idea of Dorothy House was frightening. Sadly, a very good friend of ours, Bernie, died here in November. I was privileged enough to come and see him here a few times. I was amazed when I came to the building, I just thought “Oh my god, it’s not even like a hospital.”

Julia spoke of the ‘amazing’ nurses who cared for Bernie, in particular Innes and Heidi, and how witnessing it all changed her view of the Hospice.

“The level of attention and care that they gave him was outstanding. I came home after just half an hour of being here and thought ‘I’d be really lucky to end up here.’”

Little things that make a big difference

One of the main differences that hospices have in comparison to hospitals is that patients can add their own touches to their rooms during their stay. During her time on the IPU, Julia’s friends and family brought in plenty of homey touches, from fairy lights to colourful flowers. She told us “I love scents and colour – my friend brought in some twinkly lights and LED candles, and they twinkle as I go to sleep.” Julia also spoke fondly of the beautiful grounds here at Winsley House, including the Fireflies, which she could see every evening from her room as the sun went down.

It wasn’t just visits from friends that Julia was able to enjoy, either. Her dog, Ruby, also came for a visit.

“The fact I’ve been able to have Ruby come and see me has been amazing – I remember asking the question and they just said ‘yes, you can do most things!”

“One of the best days”

During her stay on the IPU, there was one day that stood out for Julia, which she told us was “perfect:”

“I asked for a bath – when I went into the bathroom there was some classical music playing and they’d lit candles all around. There was even a bottle of prosecco and a glass which one of the nurses had popped out to get me. I laid back, had my washed, and afterwards I put on fresh pyjamas – it was one of my most wonderful days.”

On the same day, our Day Patients were busy meeting some tropical animals brought in by Kris, who runs a Tropical Discovery Workshop. Knowing Julia is an animal lover, it was arranged by the team for Aurelia the corn-snake and Spyro the bearded dragon to pay her a visit – but there was even more to come later that day!

While she was disappointed to miss out on a trip to The Rec with her dad and husband, Richard, to watch Bath Rugby play the Harlequins, rugby fan Julia was delighted to receive video messages from members of the team, including our very own Dorothy House Ambassador, Tom Dunn: “I was disappointed not to be there and not be able to go back, but it was a very special thing to get messages from them.” Her day was then topped off with a movie night alongside her two nieces.

“That has got to go down as one of the best days of my life, which I’ve had right at the end. Just as a memory for me to have, it was perfect.”

After a few days receiving care and support from our teams, combined with visits from friends and family, Julia getting was ready to go home, where she had a whole host of plans with her loved ones.

Planning for what matters

When it comes to writing your own ending, Julia has been doing exactly that, writing and planning every detail in her notebook, with the help of her two nieces. Among her plans are a trip to Longleat with her family, and even a tattoo party with her friends.

“I’ve always wanted a tattoo, and my husband hates them so much, but this is the one time he can’t argue with me! I just reached out to all my friends and said, “this is an itch I need to scratch, does anyone want to come with me? A lot of my friends are having my handwriting with messages I’ve written for them. I’ve even got my nieces writing things that they want to keep and have done in the future.”

Instead of a traditional funeral, Julia has also opted for a celebration at her local pub in Corsham, where she’s planned for it to be decorated with her favourite yellow flowers, photos of her and her loved ones, and a perfectly curated playlist.

The joy of giving

Julia has already gone through her jewellery and decided what she’s leaving to her loved ones. But she has special plans for her clothes too – including her six pairs of cowboy boots! Knowing that certain pieces will bring them comfort after her death, she’s inviting her friends to go through her wardrobe while she’s still here, complete with a few glasses of fizz to make an evening out of it.

“I’ve gone through my jewellery and what I want people to have, but I’ve not gone through my clothes, and I think that will be a bit of relief for Richard. I’m not leaving the cupboards bare, but there’s some lovely things that I know people would really like. I’m having a bit of an open house for my friends with some fizz – you’ve got to make the best of it! The rest of it will go to Dorothy House, but there are some things I know people would really love and they’d get some comfort out of it. Everyone loves to give – all of that would have happened when I’m not here, but it’s quite nice that it’s happening now. If you’re strong enough, it’s nice to do it when you’re still here.”

End of life care

At the time we chatted to Julia, she was preparing to go home and enjoy the plans she had made with her friends and family, but when the time comes, she intends to come back to the Hospice and spend her final days on the Inpatient Unit.

“I’m going to go home until its necessary for me to come back, because that’s what I want to do. I want to come back here, and I want to die here.”

Julia’s advice to anyone in a similar situation who may be scared to reach out to Dorothy House was simple: “just do it!”

“It will be the best thing you can do to ease your way into the next stage. You will be constantly enveloped in knowledge, in genuine care, in understanding of your situation – not just for you but your family as well – and you’re in an environment which is immediate to your needs, which you don’t have access to at home. My shoulders dropped significantly the moment I walked in here. You’ve got nothing to lose at this stage, and I feel privileged to have found this place thanks to Bernie. Just come, even if it’s for a visit, even if it’s just to see the beautiful grounds. It’s a stunning place to be.”

Thank you to Julia for sharing her story with us. To find out more information about our end of life planning resources, visit our Information Hub. You can also download our free Peace of Mind Planner here, where you can record everything from practical information to your end of life wishes.