Death…and why we have to talk about it

Why are we so bad, in our society, at dealing with death – in all its forms?

Because we don’t know how to confront it, and British nature isn’t set up for confronting challenging topics head-on, so we try to shy away, change the subject, or gloss over the matter with flowery language.

Obviously I blog primarily about our experience as bereaved parents and our journey parenting a child that doesn’t live here with us. And yet death and bereavement is all around us in many aspects of our lives, but we’re terrible at dealing with it.

My great friend David, whose precious daughter Grace was born dead the same night as Henry in May 2014, is absolutely adamant about the importance of language. In his truly breathtaking poem, I Pause, he says:

“Grace, I will say it, that’s my daughter’s name and I’ll own it and shout it out loud. And I need you to know I have said to my friends that my girl wasn’t stillborn – she DIED. And I’m sorry if talking like this ain’t a hit, but I’m not gonna sugar coat it.”

David I Pause

At our charity’s conference on bereavement care at the University of York in February of this year, my friend Kirsty, Holly’s mum, spoke to an auditorium full of midwives and student midwives. Kirsty is Holly’s mum, so she spoke to them as a bereaved parent, but she’s also a qualified midwife, so she spoke to the audience as one of THEM as well as one of US, bridging the gap between maternity professionals and the parents and families they’re supporting.

Kirsty also spoke on this subject in similarly forthright fashion:

“I share openly and honestly, because things will never change if we skirt over the subject of death because it makes us feel uncomfortable. I promise you, however uncomfortable the subject of death makes you feel, its ten times worse for the parent who has to live with it stamped into their lives.

Things will never change if we keep sugar-coating death as a baby “born sleeping” in a bid to make it less traumatic. And things will never change if we don’t speak up, and STAND UP, for those births to be given as much importance as any live birth.

So that’s why I’m here. Because Holly’s life and death hasn’t ended. She has shown me how important it is to get bereavement care right. We as bereaved parents only have one chance of making memories with our babies. But WE as midwives have that chance to help assist those parents, and give them the best experience possible.

Life matters…but so does death.”

Kirsty was talking about bereavement care for parents whose babies have died, but she could just as easily have been talking about bereavement care for families whose loved ones have died suddenly, or about palliative care and providing dignity and decency in death as well as life.

Kirsty and Holly

Last week, I wrote about Briony’s journey through cancer treatment within a year of Henry’s death, and my own emotional turmoil at the possibility of her dying too. I also talked about others in Cancer Land (as my incredible friend Heidi describes it – like Disneyland, only more deaths) who’ve inspired me and given me strength over the last three and a half years since Briony’s diagnosis.

Heidi was the first. Heidi stands like an impossibly optimistic colossus across the fields of baby loss (child death) and cancer, having delivered her daughter Ally healthy and well at 28 weeks in order to start aggressive chemotherapy for Inflammatory Breast Cancer, only to tragically see Ally contract an infection and die in NICU aged 8 days, before she received a terminal cancer diagnosis.

Pete was the second. Pete runs Mummy’s Star, the only charity in the UK dedicated to supporting women who receive a cancer diagnosis during pregnancy or within a year of giving birth, a charity he set up following the death of his wife Mair from cancer two months after their son Merlin was born in September 2012.

A cancer diagnosis during pregnancy is something that affects between 600 and 800 women a year in the UK – two women EVERY DAY in the UK are diagnosed with cancer whilst pregnant.

That’s frightening – and that’s the crux of it. Cancer is frightening at the best of times, let alone during pregnancy.

Death is frightening.

But like Kirsty said “things will never change if we skirt over the subject of death because it makes us feel uncomfortable”.

The last person I talked about in my blog last week was the inspirational BBC Radio Five Live presenter Rachael Bland, who was diagnosed with triple-negative breast cancer in November 2016, (like Briony, Heidi, and Pete’s wife Mair during pregnancy or within around a year of giving birth).

I talked about her incredible positivity, her award winning blog Big C Little Me (“Putting the CAN in cancer”), and the amazing podcast she’s been doing in recent months, You Me and the Big C, with Deborah James (@bowelbabe) and Lauren Mahon (@girlstolelondon).

What the three of them have achieved with this podcast (top of the iTunes podcast charts) is staggering on one level, yet on another pretty predictable for anyone who’s faced these sorts of battles. They’ve changed the entire landscape about how society discusses cancer, and also how society faces death. They’ve made it socially acceptable to talk about cancer, and on a wider level, to talk about death.

Because the truth is, the people fighting these battles (whether it’s cancer, the death of a child or a partner, or anything else) don’t want to be swept under carpets, whispered about around the water cooler, or see people cross the road to avoid these conversations. They want, more often than not, to talk openly and honestly and to tackle the challenges they face head on. Because it’s their reality – whether it’s the death of their baby or their battle with cancer – and they’re going to have to face it whether everyone else faces up to it or not. People want to give something back, they want to make a difference to others through their suffering, to stop it from being in vain. Heidi said this when she spoke in York:

Heidi what you leave behind

But it’s easier to face these incredible challenges with people around you than it is to face them alone. Often people have not been able to talk about them because of the social stigmas and taboos that surround them. People facing up to their impending death often aren’t scared about dying – I’ve seen both Heidi Loughlin and Rachael Bland talk about their fear being not for them, but for the people they leave behind. Similarly, when facing the possibility of death from cancer, Briony was pretty philosophical – “if I die, I get to be with Henry”. We’re the lucky ones though, Briony survived.

This morning, Rachael Bland died after announcing two days ago that she’d been given days to live. Tributes have, quite rightly, been pouring in all day on the radio, on the TV, and on social media.

I listened to the actor Greg Wise, who’d been on their #YouMeandtheBigC podcast recently, on Radio Five this afternoon paying tribute to Rachael, and he talked about a psychologist who’d said that there are only two days in our lives that last less than 24 hours, the first and the last, and we focus enormously on the first and pretend the last isn’t going to happen, when it’s arguably more important than the first. He then said:

“One of the things we all have to keep doing, we all have to keep the conversation going. Deborah and Lauren were extraordinary as well, because they’re both in a very similar position to where Rachael found herself, and the bravery of that. But we have to make it not seem brave, we have to make it seem everyday, we have to be able to have these conversations in the pub, over the dinner table, at the hairdressers, whatever, because it’s the only thing we know is going to happen to us.”

And that’s it really. Death’s coming to us all. So while it might not be in the natural order of things for a baby to die before birth, or for a supercharged forty year old woman to die in the prime of her life, actually it’s going to get us all in the end. We need to stop pretending that it won’t, and we need to stop avoiding the situations when it has. We need to stop talking about babies “born sleeping” or young adults that “pass away” rather than “die”.

These social conventions that say we shouldn’t talk about child death, or death from cancer, or whatever else it might be, are (quite frankly) bullshit. Society has created these conventions to help and protect itself, not the people who are dealing with these things. It’s utterly counter-productive.

Deborah James posted this underground board tribute to Rachael yesterday with the caption “When you start to realise the difference talking makes…”

Rachael underground board

Bob Hoskins told us over twenty years ago that “it’s good to talk”, but society hasn’t kept up. Yet, when inspirational people like Rachael, Deborah, Lauren, Kirsty, and Heidi break with convention and DO talk about death, everyone responds in kind, because (as individuals) we’ve been wanting to talk about this stuff forever, but we’ve all simply followed the conventions.

If we want to ensure that David’s daughter Grace, Kirsty’s daughter Holly, Henry, Heidi’s daughter Ally, Pete’s wife Mair, and Rachael Bland leave a legacy, then we all need to change how we see death. It’s something we need to recognise, tackle head on, and talk about. It’s not about what we have, it’s about what we give. Life matters, but so does death.

Winnie the pooh 1

Rest in peace Rachael, you leave behind you a truly incredible legacy that means that, almost overnight, society is talking about death better than it’s ever done before.

I’ll finish this with one of your hashtags.

#fucancer

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