(Photo: Graham Prentice via PA, Getting Images, The Harkness Rose Company via PA)
“I find myself living in limbo land, not really knowing what the future holds and for how long,” writes Dame Deborah James. “It’s a very stressful, uncertain place to be.”
The prolific campaigner, 40, who was diagnosed with bowel cancer in 2016, has been documenting her end of life on Instagram, after she was discharged from hospital and given “just days” to live over a month ago.
Her life – and charity fundraising – has extended far beyond expectations, not least her own. The Bowelbabe Fund that she launched for Cancer Research UK in May has reached a staggering £6.7m, while her capsule clothing collection with In The Style, has contributed an additional £650,000 to date, much of it from the sale of T-shirts featuring her favourite mantra, Rebellious Hope.
In this time, James – a writer, podcaster and mum to Hugo, 14, and Eloise, 12 – has been using her platform to speak openly about death, in a way we so rarely hear.
Her snaps show her smiling at Glyndebourne, donning her trademark lippy for the races at Ascot and enjoying some well-deserved champers when Prince William visited her at her parents’ home to bestow her damehood.
“Still living whilst dying,” as she put it.
But James also captions each post candidly, detailing tiredness, pain, anger, confusion and fear, admitting one of the hardest parts about facing the end of your life is “the pressure of making memories”.
Emma Clare, 31, an end-of-life doula based in York, thinks it’s “refreshing” to see frank conversations about death in the public eye.
“I see things about death and dying all the time, but it’s partly because I’m in a bubble of other people who talk about it all the time. So this feels like it’s popped that bubble a little bit,” she says.
An end-of-life doula – sometimes called a death doula – works to support those diagnosed with a terminal illness, as well as their families. Part of the role is to help people prepare for death, but also to support families making the most out of their time together, whatever that means to them.
Aly Dickinson, director of End of Life Doula UK, says James has demonstrated how that’s possible.
“Dying does not have to be a miserable, hushed-up thing,” she says. “You know, she’s showing that you can carry on living, and that you can carry on having purpose until the very end.”
One of the most common questions people have for death doulas is what will happen when they die. Of course, nobody living can answer this exactly – regardless of your beliefs – but doulas help inform clients about the possible physical stages leading up to death.
“I always liken it a bit to a midwife having a birth plan, with someone saying before the event ‘we might expect to see this’, and then when it is actually happening to the person, you can help them by saying, ’oh, you know, we talked about this, this was expected and this is part of the natural process of dying,’” Clare explains.
“I just really believe in giving people the information, so that they can know what to expect, because I think all of it being unsaid and unknown, it makes it even more frightening to people.”
End of life doula Emma Clare thinks Deborah's posts have been "refreshing". (Photo: End Of Life Doula UK)
James has also been helping to lift the veil on death. She hasn’t shied away from speaking about her physical decline on social media, revealing she’s now sleeping for most of the day, is wearing a nappy, and can’t face much food.
For Dickinson, who’s 69 and still works as a practising doula in Devon, speaking about the realities of death on social media like this just makes sense.
“We put so much else on there – weddings, births, anniversaries – and death and dying is a life event,” she says. “I really love the fact that the so-called taboo of dying – and also poo! – is out there. It could be a wonderful way of showing that we can talk about these things, and modelling that.”
Dickinson believes James is “opening the gate” for other people to speak about end of life care on social media, in the same way that some people find comfort in sharing their grief online. But this won’t be for everyone, she notes. In fact, most of her clients want to keep the end of their lives private, with a small circle present during their final days.
“There’s not a ‘one size fits all,’” she says. “There’s no right way to approach it.”
Aly Dickinson says there's no 'one size fits all' approach to death. (Photo: Aly Dickinson)
Dying is not linear
James has also taught us that death is not a steady or predictable decline. She has good days and bad days – physically and emotionally – which is to be expected.
“People fluctuate all the way through,” says Dickinson of the people she works with. “Some days they may be quite calm and quite accepting. And then other days, they’re angry because of the life that they’re losing – seeing children growing up, or if they had a very full life, that life is gone. There is anger and resentment about that, which is completely understandable.”
In an interview with the Sun, James spoke about being “consumed by anger” herself. “In all honesty, I’ve been a real bitch,” she said. “I keep shouting at people and pushing them away. I’m angry at what’s happening to me. I don’t want to die.”
For doulas like Clare, who support people to talk about the whole range of emotions they’re experiencing at the end of their life, an interview like this in mainstream media is pretty game-changing.
“It almost feels to me like sadness is what we as a society expect grief to be about. And of course, not just grief after a person’s died, but anticipatory grief for the person that’s dying and those around them,” she says.
“Grief is such a full spectrum of emotions and I think anger is a huge part of them; the thoughts of ‘why is this happening to me,’ ‘this is so unfair’. And I think we need to be better at giving people the space to express those emotions, not just the sadness.”
She also wants to normalise the full range of emotions that loved ones can experience when somebody dies.
“Of course, when somebody dies you want to cry and you feel very sad. But there’s all sorts of other things you feel, especially for informal carers,” she says.
“It’s okay to say ‘I feel really sad, but a bit of me also feels relief that they’re not in pain anymore’, for example. I think it’s important that we help people to express all of those things to make their grief as easy as possible.”
There’s choice in death
As she nears death, James has made the hard decision not to see close friends, and only spend time with family. But she’s determined to raise awareness of bowel cancer and fundraise for as long as she can. She’s acknowledged that not everyone will understand her choices, but crucially, she’s pointed out they’re hers to make.
“People might look at me and think, ‘Just spend time with your family.’ “They might question why I’m doing all this — the book launch, the T-shirts, raising money for my BowelBabe Fund. The truth is, it’s giving me purpose in my final days,” she told the Sun.
“It’s amazing what you can do with a deadline — the ultimate one. And my family are all a part of this with me. We’re doing it our way.”
It’s powerful to remember that there’s choice in death, says Clare, who was pleased to see James speaking openly about the decision to end her treatment and move to palliative care.
“I think that’s so needed to counter a lot of the things that you see in the media about ‘so and so has lost their battle with cancer’, or whatever it is. And what she’s done is say that, obviously, death is inevitable, but there are still choices that you can make about what works best for you.”
Dying teaches you a lot about living
You’d be mistaken for thinking that talking about death is depressing. What James and doulas like Clare and Dickinson can teach us, is that confronting death can empower you to make the most of life.
“Part of the reason I love working in this field is because it just gives you a constant reminder about everything being finite,” says Clare. “And that gives you the freedom to focus on really what matters to you.
“From what I’ve seen, that’s what Deborah is doing. I think that’s great.”
This article originally appeared on HuffPost UK and has been updated.