How To Live When You Could Be Dead extract: Dame Deborah James reflects on life

The late Dame Deborah James, known to millions as Bowelbabe, isn’t here to celebrate the publication of her book, How To Live When You Could Be Dead.

But it was a source of comfort for the campaigner to know she might be helping people ‘long after I’m flying high’.

Diagnosed with terminal bowel cancer in 2016, and given less than an eight per cent chance of surviving more than five years, the former deputy headteacher made the decision early on to educate the public any way she could, for however long she had left.

With tenacity and determination, she set about sharing her cancer journey on social media, TV and the podcast You, Me And The Big C.

Brushing aside prudishness in favour of candour, she got the nation talking about bums, bowels and toilet habits. And by doing so saved lives.

One of the people that knew her best during that tumultuous time was the editor of her book, Sam Jackson.

‘Deborah became super clear about the message she wanted to get out into the world, summarised in her mantra “rebellious hope”,’ says Sam.

A fan of Deborah’s Instagram account (@bowelbabe), it was Sam who had initially reached out to ask if she’d like to write a book.

‘It was an immediate “yes”, and her energy and enthusiasm were inspiring,’ says Sam, who is editorial director at Ebury.

‘The title and direction for her first book, F*** You Cancer [published in 2018], came from her content online and the hashtag she used. With How To Live, I felt her unique mindset could help absolutely anyone facing life’s challenges and knew she could write a brilliant and far-reaching book for everyone.

‘No matter what was going on for Deborah, she always wanted to help other people. She would always want to hear about my life and try and help me however she could. She was selfless, kind and so generous with her time.

‘And when we discussed her work, unlike most authors, she loved feedback, and this meant that working with her was an absolute joy, with a lot of laughter along the way.

‘It was Deborah’s hope that people reading How To Live would know it is possible to find light in the darkest of places and that, if we set our mind to it, we can achieve anything we want.’

The cruel irony was that Deborah was so full of life, her vivaciousness so infectious, that when she announced in May that there was nothing more that could be done and that she’d moved to hospice at home care, it blindsided everyone.

But, even in her last few weeks, the mum-of-two continued to campaign and inspire, and despite her growing frailty, always looked characteristically fabulous.

Bowel cancer: vital details

  • How common is it? It is the fourth-most common cancer in the UK and the second-biggest cancer killer. Around 43,000 men and women are diagnosed with it each year.
  • What are the main symptoms? Changes in your bowel habits, such as pooing more frequently or looser stools. Blood in your poo or coming from your bottom. Unexplained weight loss, extreme tiredness and pain or a lump in your tummy.
  • Could the symptoms be something else? Yes, but it is important to check. They can also point to irritable bowel syndrome, inflammatory bowel diseases or an infection.
  • What will happen at the GP appointment? Your GP may want to check your tummy and bottom for lumps and give you a blood test. You may have to do a faecal test at home or have a colonoscopy at hospital.
  • How treatable is it? It is treatable, especially if diagnosed early. Survival rates fall the later it’s found.
  • What treatment is there? Surgery, chemotherapy, radiotherapy or biological treatments. A colostomy or stoma may be needed.

She established the Bowelbabe Fund for Cancer Research UK and raised millions of pounds (it currently stands at over £7.4million), had a rose named in her honour, received a damehood and hosted Prince William at her parents’ home in Woking where she was receiving end-of-life care.

In typical taboo-breaking style, she also talked candidly about facing her own death, as she does in How To Live When You Could Be Dead.

It’s a book she started to write two years ago when, as she remarks in the author’s note, 
she was ‘still feeling relatively healthy and 
the cancer was progressing slowly’.

As it dawned on Deborah that she wouldn’t be around to see its publication, ‘it sharpened the focus and purpose of the book,’ reveals Sam. Deborah passed away at the age of 40 on June 28, surrounded by her loved ones.

How To Live is part of her legacy, a collection of lessons she learned in fronting her terminal illness head on, from facing fears and valuing time to embracing positivity and harnessing the power of hope.

Not only does it serve as a guide to facing our own mortality, it also reminds us how to live.

Here, in an extract of the book, Deborah shares her thoughts as she neared the end, and what she wants us all to remember when it’s too easy to take life for granted…

An extract from Deborah’s book How To Live When You Could Be Dead

‘Every day, I stand at a crossroads: down one path is depression, mind-f***ery, fear of the unknown, heartbreak and mourning – all out of my control; down the other, the one I choose to travel the most (though not always), is positivity and agency. I can’t change what’s happened or what will happen, but what I am in control of is how I react to my circumstances – that’s 100 per cent in my control.

Like all of us, I have the ability to make my feelings about my situation, right now, today, anything I want them to be, regardless of the final outcome. The way I approach adversity is my greatest weapon. It’s a game changer, and it’s all
I need – it’s all any of us really need.

To begin with, we need to stop focusing on “Why me?” and realise that “Why not me?” is just as valid a question. How we learn to respond to any given situation empowers us or destroys us – it’s how we react to the things on our journey that makes us or breaks us.

That’s why I want to encourage you to question your life as if you didn’t have tomorrow and live it in the way you want today. Being positive isn’t keeping me alive, but it’s helping me to pick myself up and put myself back together over and over and over again.

When I was diagnosed, I looked at my husband [Sebastien] and kids [Hugo, 14, and Eloise, 12] and thought, “I can’t die now”. I felt unsatisfied and thought, “If I die now, there are too many things left hanging”. I don’t feel like that anymore. I’ve got to the end, and I regret I won’t be able to watch my wonderful children grow up, of course, but that’s it.

I don’t feel bitter; I feel proud. I don’t have any regrets about the people I’ve loved, or about unfinished business, or about the things I’ve done with my kids, or about the memories I’ve made.

People have said that I am showing how it’s possible to have a good death, but the reality is I’m petrified. Inside I am so scared. I hate that it all has to end and that I have to leave behind the peopleI love so much. There’s no amount of positivity that can overcome that. All I can do is remind myself that my loved ones will be looked after once I’m gone, that they’ll be OK. They’re proud of me, and they love me, and they’ll remember me in lots of different ways. And they’ll always have a bit of my rebellious hope inside them.

You have to savour life and enjoy the little things. Be grateful that you can simply move around. Take pleasure in being with your family. Enjoy your body. When all is said and done, these are what give me the most happiness.’

How To Live When You Could Be Dead by Deborah James is out now.

Ebury, a division of Penguin Random House, will pay £3 from the sale of the book in the UK to Bowelbabe Fund for Cancer Research UK.

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