As my magical Debs was dying this was the one thing I needed to say, reveals Dame Deborah James husband Sebastien
AS DAME Deborah James took her last breath, it was her ‘rock’ and husband Sebastien’s voice she heard.
Holding her hand, he told his wife how proud he was of her.
“I kissed her on the head,” he tells me, in his first interview since her death.
“I told her how much I loved her, that I would look after the kids and the last thing I said to her was that I was so proud of her. Then she slipped away.
“She had an incredibly peaceful death, if there was a way to die well, then she managed it.
“At the very end, it was quite spiritual.”
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It wasn’t hard to be proud of Dame Debs.
In the last seven weeks of her life alone the 40-year-old achieved more than most of us will in a lifetime, capturing the hearts of the nation in the process.
The fierce campaigner raised a staggering £7.4million to fund cancer research, she was made a Dame and had Prince William over for tea.
Despite being unable to walk without help, Deborah found the strength to launch a clothing line, she designed charity T-shirts to raise another £1million for her BowelBabe Fund and managed to complete her second book, How To Live When You Should Be Dead.
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All that after five-and-a-half years of telling anyone who would listen: “Check your poo!”
From the moment the ex-deputy head teacher was diagnosed with incurable bowel cancer in December 2016, to her death on June 28, Debs raised awareness, campaigned and used every ounce of her energy to try and leave the world a better place.
There’s no doubt that in talking so openly and honestly about her experience of living with bowel cancer, that Debs has saved – and will go on to save – many lives.
It’s these achievements among many others that leave Seb, 42, bursting with pride.
“But it’s more than that”, he tells me. “I’m in total awe of Debs, I’m in awe of what she did and how she went about it.”
When I ask what he loved most about his wife of 14 years, Seb tells me it’s the same thing he will miss the most.
Fighting back tears, he says: “It’s her magic, her way of finding joy in every moment – even in the darkest of times. That’s what I’ll miss most, it’s quite a rare thing.
“It was at the very core of what made her unique.”
It was a spark that never left the mum-of-two, and even now just weeks after her death, Seb says he’s still comforted by her magic and feels a responsibility to carry it on, for the sake of their kids, Hugo, 14, and Eloise, 12.
On May 9, Deborah shared a heartbreaking post, revealing that she had left hospital and was no longer having treatment for her cancer.
She was given just days to live. But in true Deborah style, she refused to give into her inevitable fate.
As at every step of her cancer journey, Debs defied the odds again, living for just over seven weeks.
And those weeks gave Seb some of the most precious memories of their lives together.
“People who didn’t know Debs saw her getting weaker and weaker in those final weeks,” he says.
“But mentally it was the opposite.
“Through battling the fires of adversity she got stronger and in my eyes, it made her more and more radiant with every passing day.
“I’ve never loved her more.
“She knew what was happening to her, yet she was able to still find those magical moments.”
One stand out memory is when the couple visited the RHS gardens at Wisley, near Deborah’s parents’ home in Woking, Surrey.
“It was just beautiful, we didn’t know what we were doing, we just went out that day hoping to find a little moment of joy,” Seb says.
“We lost ourselves in each other, that is what true love is.
“We were able to forget what was happening, what was about to happen and what the next few weeks and the future would bring.
“In the last few weeks of her life, we had some of the happiest times of our lives together.”
On another trip out about a week before Debs died, Seb captured one of his favourite photos of his wife.
“The sun was shining, we had an amazing meal and she was able to put aside the cancer and the pain and just embrace the beauty and magic of the moment,” he says.
“I captured a photo of her, her eyes were shut and she was smiling. She didn’t know I’d taken it, but it’s one of my favourite photos of her.”
“It was the little moments, it really surprised us but it was the smallest things that became the most important to us all as a family,” he adds.
The couple met on a night out at Cafe de Paris in London in 2005, and three years later they married in France.
“She always had this crazy energy,” Seb recalls. “But, her spark evolved.
“We met when we were really quite young, and we both evolved as people – especially after becoming parents.
“It was in the last five years that she really found her magic.
“Cancer just opened her up, it laid bare to her the preciousness of life in a way she hadn’t felt before.
“Believe it or not, lockdown was magical for our family.
“I would be working upstairs and Debs and the kids would be creating incredible outdoor cinema experiences and parties for us.
“Throughout our time together she threw the most incredible off-the-cuff parties for our friends.
“She was ill at the time of her 40th so didn’t want to plan anything but three days beforehand she decided she wanted to celebrate.
“She managed to create the most beautiful evening for us all.
“And in the end, during those final weeks, that magic was magnified a thousand times.”
PERCEPTION SHIFT
It was cancer that transformed Deborah’s perception of the future, Seb recalls.
Before she was diagnosed the 40-year-old used to panic about getting on a plane, or getting in a lift.
She was terrified of peacocks, after being chased by one as a child. But cancer made her confront her biggest fear of all, death.
“When she got her diagnosis something just changed,” Seb says. “It went from being a hypothetical fear to being her reality.
“And from that moment on she decided she couldn’t let that fear determine or take over the life she had left.
“I would regularly look at Debs and think, ‘how do you do this, how do you get through these dark times?’.
“In the last few weeks I’ve spent a lot of time thinking about that mental resilience.
“They were moments none of us can begin to imagine.”
Never was that more true than in the last seven months of Dame Debs’ life.
She spent the majority of that time in hospital, drains protruding from her liver and stomach, taking seven different antibiotics and feeling sick all the time – only able to see her mum, Heather and Seb.
“In January she suffered a horrendous internal bleed, and was inches away from dying.
“I don’t think I’ve ever experienced trauma like that,” he says.
“She was bleeding out, throwing up huge amounts of blood on the floor at home.
“She had a very short period of time to save her own life.
“Yet even in that terrifying moment, she managed to stay so strong, she found this incredible inner strength to survive.”
For the last five-and-a-half years, Seb admits he hasn’t been able to think about the future.
At the beginning they lived life day by day, towards the end of Deborah’s life it was hour by hour.
But in doing so, Debs taught them all how to live in the moment and make the best of the smallest of things.
It’s the one life lesson Seb hopes their children will hold on to – and it’s one he hopes anyone reading her new book will remember.
“The book isn’t her inner ramblings, it’s a really honest account of how she dealt with living life while facing her own death,” Seb, who works in finance, says.
“It’s influenced by her growth mindset and her teaching roots – it’s all backed by her scientific research.
“It’s been really emotional re-reading it. We wrote the last chapter together, in her parent’s garden.
“There’s a piece she wrote for the kids, I was crying as she dictated it to me and I read it at her funeral.”
Dame Debs shared her journey with the world, in her Sun column Things Cancer Made Me Say, on social media and on her BBC podcast.
“The bit many people didn’t see as much was Debs’ absolute determination and mental struggle to find the energy and positivity that she shared, it was just amazing,” Seb tells me.
‘DETERMINED’
“She had her flaws like anybody but she was determined, she knew what she wanted and in her darkest times she held onto her rebellious hope and she kept going.
“When you read the book, you will see how that came about.
“Last week, I was having a really tough day and I re-read the chapter on resilience and it helped me.
“She didn’t want the book to be about cancer, she wanted it to be relevant to people facing their own biggest fears – she wanted to help them embrace life.”
With that in mind, as he looks to their family’s immediate future, Seb says his priority is continuing what Debs started.
“I don’t want us to go, ‘she’s not here, let’s be miserable’,” he says. “That’s not the legacy she wanted to leave behind.
“That’s why I decided to take August off and plan an adventure for the kids.
“I wanted us all to just get away, and go in search of more joy and magic in her special place – a little village in the South of France.
“It’s bittersweet, it’s a magical place for us but it’s full of memories of Deborah.
“It’s good to talk about her with the kids, I think it’s important that I’m open with them about how I feel, and what I’m thinking about.
“It’s important to feel, even if what you’re feeling is hard. Deborah felt life, she truly loved life.
“Human beings instinctively plan for the future but that can get in the way of living in the present.
“Hopefully Debs’ ability to live in the now is something that our kids now have.
“It’s a hugely valuable lesson they have learned from their mum, and one they’ll always carry.
“That ability to have a longer term vision of how life might go, but understand that life is full of hiccups and sometimes things go off plan – and in lots of cases, that is exciting.”
“There was a line in the poem that Deborah’s sister, Sarah, read at her funeral, it said ‘keep talking my name as if I’m next door’,” Seb adds.
“We will always talk about her, she would hate it if we just stopped.”
Deborah loved life, says heartbroken mum Heather
EVEN as a little girl, Deborah loved life, her mum Heather, tells me.
“When she was eight I remember her telling me, ‘Mummy, there are just not enough hours in the day to do everything I want to do’,” she recalls.
“She loved life and she had the most amazing imagination.
“When she was three, I found her in the lounge – she had torn up sheets of paper and thrown it all around the room.
“When I asked her what she had done, she just replied ‘I’ve made snow, mummy. We’re having a snow day’.
“Another time she emptied an entire wheelbarrow of dirt in the lounge because she wanted us to have an inside garden.”
“We will miss her forever,” Heather adds. “She was the one who instigated our next adventure, and brought the sparkle to our lives.
“She had this incredible ability to make something out of nothing.
“As a teenager the best present she ever got was a bag of scrap material from the local fancy dress shop, she turned it into incredible costumes.
“Even as a grown up her favourite shop was Hobbycraft, and Eloise is exactly the same.”
One of the things Heather says she admired most about her eldest was the way she brought up her own children, Hugo and Eloise.
“She was a very different mum to me and I really respected her for it,” she admits. “I was more of a perfectionist – I refused to let her leave the house with odd socks.
“But Deborah would let the kids go out in fancy dress. I’d warn her they would get cold, and she would tell me, ‘they’ll learn’.
“She brought the kids up to learn from their mistakes, I just tried to protect her from making mistakes.”
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“I was given this child, and I believe all children are gifts,” she adds. “I’ve always known she was a bit different, and we are so proud of her and what she achieved in her short life.
“Part of me thinks she knew she would only be in this world for a limited time, and so made the most of every second.”
- To donate to Deborah’s BowelBabe fund visit bowelbabe.org
Ebury, a division of Penguin Random House, will pay £3 from the sale of ‘How To Live When You Could Be Dead’ by Deborah James in the UK to Bowelbabe Fund for Cancer Research UK. Cancer Research UK is a charity registered in England and Wales (1089464), Scotland (SC041666), Isle of Man (1103) and Jersey (247).
