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Lizzie’s story – Let’s talk about death

After being diagnosed with stage 4 breast cancer, Lizzie Gleaves wanted to open up the conversation around death and dying

“I only have a few months left to live, which means I’m dying. Surprisingly, I’m pretty okay with that.”

After being diagnosed with stage 4 breast cancer in 2020, 44 year-old Lizzie Gleaves wanted to open up the conversation around death and dying. Lizzie began filming a video journal – ‘Let’s Talk about Death’ – to share her experience of facing a terminal illness and encourage others to talk about death.

“One of the things I find most challenging is how difficult other people find it to talk about death. I’ve realised that it’s something that’s going to happen to all of us and I feel that it’s best to be prepared for it.”

With the End in Mind

A woman wearing a pink headscarf holding a book

Lizzie began her series of videos by offering her tips for talking about death and preparing yourself and your loved ones.

“My first tip is this book: With the End in Mind by Kathryn Mannix. She’s a palliative care doctor and she’s absolutely fabulous. It’s a wonderful book – very gentle, very humane – a real ‘how-to’ book about dying. The book talks about communication with relatives and friends, about hopes and aspirations and tying up loose ends.

“I have been complimented a few times on how willing I am to talk about death and I know that this is usually not very easy. However, there’s a really good reason to talk about this in advance: unfortunately, bad things happen. We always think that they’re going to happen to someone else, but sometimes, they happen to us.

“If you should be involved in some sort of major incident or you get very sick and die, your nearest and dearest are going to be in a state of shock. And yet, within a relatively short space of time, they are going to have to make some very important decisions and take care of a lot of paperwork. This is not an ideal situation and you can easily relieve a lot of suffering for those closest to you by simply making a few decisions in advance.

“I want you to think of one particular question that will arise, it’s simple, but quite deep: do you want to be buried or do you want to be cremated?

“In certain countries, the rules are already decided for you and little details following on from that, like where you can scatter ashes, are decided too so you will need to take that into consideration.

“It’s really great if that’s a starting point to talk about what you want after you die. If you can’t make a decision, look into the economics – how much does it cost? Or look into the environmental impact – which has a lower carbon footprint?

“You have a choice, so choose one of them and tell people. Then you can write it down and, even better than that, talk to a legal professional and they’ll write it down.

“So, please, just try in the next few days to think ‘in the sky, or in the ground’. Simple decision? Not really. But at least there are only two options.”

Keeping a Control Journal

Two journals and two coloured pencils

After sharing her first two videos on social media, Lizzie received a comment from a viewer saying “My dad has a death file” and Lizzie decided to create a third video about this.

“My dad has a death file too and I have a death file, although it’s not called a death file – it’s called ‘The End’ and it’s at the end of my Control Journal. It’s important to let somebody know that this file exists and you can slot into this file anything that comes to mind before you die; any song you would like at your funeral, any poem that has a deep significance to you, any prayers or bible readings, anything that you would like to be used in the ceremony when you are remembered.

“Don’t worry about the format, just slot in things as you think of them. This is not a finite project, it’s just something that can keep doing and every now and then, take a look through and rip out what you don’t want.

“It’s very important that people know what you want and how you feel about things. Sometimes we just don’t have those discussions so, write it down. You could include things like who you would want to receive a necklace or a collection of books. It would be great if this was in a Will, but second best, stick it in your death file.

“My death file is at the end of my Control Journal and a Control Journal is basically a ‘how-to’ file of the house. I have a section for medical and for school but it’s not for bills and things like that. It’s like a reference manual and that’s also a good point – if you need to hand over the responsibility of your home to someone else, make sure that you and your significant other or your children or your parents know where to find things that are important for your home.

“At the moment, my husband John and I are in a period of transition. I was very responsible for household tasks and now John is learning to do some of the things I did. It’s really handy to be able to say ‘that’s in the school section of the Control Journal’.

“So, start a death file, or call it something more cheerful! I know administration is not the most fun thing in the world, but I use lots of stickers and things to cheer me up!”

Bucket List vs. Life List

A woman wearing a pink headscarf and glasses smiling

In her final video of the series, Lizzie shared the importance of making a Life List.

“Let’s talk about death, or rather, today I’d like to talk a bit more about life. I have a bucket list and I’m sure a lot of you will know what that is: a list of things you want to do before you die.

“Some of those things, I have achieved, and some I haven’t. One thing I did recently from my bucket list was to go to Scotland and it was amazing. I’m so glad I went. My family and I had a really special time there so it was really important for us to go.

“I won’t get to achieve everything. I’m realistic – along with the pandemic making things difficult, I’m running out of steam so some things just won’t be done. I have to come to terms with that.

“I think I should have changed the name – bucket list has quite negative connotations of doing things before you ‘kick the bucket’. Personally, I think it should have a more positive name, such as a ‘life list’ or a ‘wish list’, something that’s more positive about the future.

“Today, I’m going to ask you to look at your life and see if there’s any unfinished business and consider your own life list. What is it that you want to do with your life before you die? Are there unfulfilled ambitions or destinations? Are there things that went wrong in the past that you want to put right? Are there relationships you want to mend?

“These are all really important. Sometimes it can be overwhelming – what do we try and achieve?

“For those less tangible things, like wanting to go to Jamaica or getting in touch with an old friend, we can decide whether to do it – make a fund for it, look them up on Facebook – or we can abandon it and say I really don’t think that’s achievable. You have to be at peace with that. Or, you can break it up a bit and that’s where you have to think: ‘Why do I want to go? Why do I want to get in touch with this person?’

“By breaking apart these desires that we have, we’ll have a clearer picture of why they’re so important to us and then we can prioritise better. We may find other ways to satisfy that need or wish.

“I would encourage you to look at your lives. Today is about life. It’s about what you want to achieve and what is important to you. If you have no worries about doing anything in the future and you’re totally at peace with everything, then well done. It’s not something I’ve managed myself. I am more at peace with some of the things I’ve pushed aside on my bucket list but I’m also absolutely thrilled to bits that I made it to Scotland.”

More of the ‘Good Stuff’

Raspberry, oats and cream in Kilner jar jugs

As Lizzie’s illness progressed, she did not feel well enough to make any further videos. Lizzie told us:

“My core reason for doing these videos and for talking about death is my family. I want to reduce their distress by talking about everything with them.

“It doesn’t have to be sad – there is so much ‘good stuff’ to focus on. I recently spent some time with my sister and she encouraged me to do more of that ‘good stuff’ and do some of the things on my life list.

“I made a new recipe for cheese scones and I also made cranachan for the first time. I never had it when I went to Scotland and I was so happy to make and eat it.

“These simple things brought me immense joy. It doesn’t all have to be gloomy. Instead, you can focus on the positives and how you want to be remembered.”

In Memory

Lizzie died on our ward on 4 April 2021. We would like to pay tribute to Lizzie for her openness and bravery in starting this conversation. It was her wish to share this in the hope that we will all talk about death.

To watch Lizzie’s video series, click here.