Bowelbabe: Dame Deborah James, in her own words

In the last few months of her life, Dame Deborah James - known to many as Bowelbabe - helped make a moving documentary about the reality of living with bowel cancer. The film features her voice notes, TikTok, Instagram posts, plus interviews for the You, Me and the Big C podcast, as well as never before seen mobile phone footage and home videos shared by her family and friends.

Below is a selection of some of her personal thoughts which will feature in the programme, available on iPlayer from Monday 17 April.

'I have the glam cancer'

Hello, I am Deborah, otherwise known as Bowelbabe, and I live with stage 4 bowel cancer. I was diagnosed at the age of 35. So the thing that you need to know about any types of cancer is that you are never too young, and you don't really know how to get through each day. You don't really know how you're going to put one foot in front of the other, and somehow you do.

I have the glam cancer. There's nothing pink about my cancer, it's just brown. I was diagnosed after six months of a change of bowel habits, basically where I was pooing blood. I'm going to be very frank, because I think one of the biggest problems is that people are not frank enough about the symptoms that led to their diagnosis, and then as a result it holds up their diagnosis.

I have two children [Hugo and Eloise]… I'm probably an advocate of being very open with your children, but I have nightmares just re-enacting what I had to say to them.

'Breaking down perceptions'

The reason I created [Bowelbabe] is because I felt that she was the polar opposite to the perception of somebody with bowel cancer.

I have the old man's cancer, but I like high heels and glitter skirts as well as the next 35 year old, so it's breaking down those perceptions of what cancer looks like.

My statistics are hideous. [Fewer] than one in 10 people survive what I have for more than five years. So I know what I'm faced against, but I have hope. To be honest with you, I feel that if you don't have hope, then what have you got?

Don't get me wrong, we all agree that the physical challenge is there, but the mental challenge, that's just as much in itself.

'I'm doing the Macarena at 3am'

I would say do whatever you need to do to get through [chemo]. So I've done dancing during chemo, fancy dress during chemo. I juggle, I do spinning plates. It's total distraction, whatever it takes, do it, and then I have to say I was surprised by how floored I actually got.

I was surprised at how many days I spent horizontal, and nobody ever tells you that they give you steroids to counteract the side effects of chemo and it means that you can't sleep.

Every single cycle, at three o'clock in the morning, I'm doing the Macarena in my sitting room. The funny thing is that I'm posting it at 3am and I'm getting 50 responses going, "Me too".

'I had my priorities wrong'

I was a very career-driven workaholic. Would leave my house at 6:30am, come back at 7.30pm. I was never there at any sports days, plays, whatever it was. I had my priorities wrong, but I didn't know it at the time, but suddenly I was forced to give that up and I actually had to learn to become a mum.

I'm not a natural earth mother, I might do it with a glass of wine, but I've now got a much better relationship with my kids as a result of my cancer. I think it changes you. I wish something else had changed me.

'I upped my lipstick game'

The mask that makeup can give you very much hides the insecurity, the scared, the feeling of uncertainty that lies very much behind that mask.

I was determined that I didn't want to look ill at all costs, so I upped my lipstick game, I upped my nail game. Even my husband was like, "Deborah you take better care of yourself now that you have cancer than you ever did," and actually it becomes like a self-fulfilling thing. So if I look in the mirror and I look like crap, I feel like crap, then if I suddenly put a face on, I suddenly feel a little bit better, and I think it's part of my coping strategy.

'You find your voice'

I probably have always been an exhibitionist, but I've done things that I never thought I could do, and it is because of cancer. I'm dyslexic and I've just written a book. I'm not saying dyslexia stops you, but I never thought I was a writer.

It's so funny isn't it, when you suddenly have something to write about you find your voice, and it's amazing the opportunities. I'm petrified of flying, but I actually flew a plane myself.

'I've done so much living'

I was given this lifeline of targeted therapy and it put my cancer to sleep, but what people don't get about it is that on average people get about six months extra life and I got two and a half years.

I knew the drugs were stopping working and everyone's like, "Oh no, that's a disaster", and I'm like, "It's not." My story's a really positive story, because I've done so much living in that two and a half years, it's quite phenomenal.

'Appreciate the rain'

A friend of mine, who sadly isn't here, he made me appreciate the rain. He was dying, not from cancer, from cystic fibrosis, and I saw him the week before he died. He was like, "Deborah, I want to feel the rain on my face for the last time," and so I took him out and we wheeled him round the hospital and he said, "It's amazing." Now every single time it rains, all I can think about is the fact that actually for some people it's the last time that they will ever feel rain on their face.

So when my body is strong enough, the thing that I love to do the most is to go and run in the rain, because it reminds me of all the people who actually would give anything to feel the rain on their face. It is those tiny things that make me feel really privileged in quite dark situations.

'My husband will be a very eligible bachelor'

I've already told all my death confessions to my husband [Sebastien], who will be a very eligible bachelor. Clearly it's been playing on my mind. I had a list of girls that I was like, right, they're going to pounce on my husband. And so I listed off a couple of names that I said that I would do my damned hardest to come and haunt him if he hooked up with those people, which I thought was absolutely hilarious.

I want to have a bench where I live, because I don't like the idea of ever being lonely in death. I like the idea of being somewhere where my kids can sit and contemplate and read a poem.

'Don't leave things unsaid'

It's this incredible rollercoaster that I'm still riding, and facing life-limiting cancer is one thing, and then realising that your life could end in the next minute is something else utterly different and I hope that I will see myself just being able to do the things that I love in life again.

I think it's a really stark reminder of don't leave things unsaid on a daily basis. It's quite amazing how much you wish just for another sunset or another cuddle or whatever it is. You can't leave things until tomorrow, because there just might not be a tomorrow.

'We'll see each other again'

I'm getting so weak and my body just can't do it anymore. I've tried so hard for five years, and I'm still trying really hard, but my body just doesn't want to play ball anymore and that's what's really scary about it. I've gone from somebody who used to run 5km a day to somebody who needs her husband to pick her up.

I've decided that I want to be at my parents' [house] because I can see greenery and the whole family can come here and it's where I've always wanted to die, weirdly.

We'll see each other again somewhere, somehow, dancing, and until then please, please just enjoy life because it is so precious. All I want right now is more time and more life.

Also check your poo. Come on, I can't leave on any other word apart from check your poo.

Dame Deborah James died on 28 June 2022, aged 40. The Bowelbabe Fund she created has raised £11.3m.

• Dame Deborah's cancer fund raises £11.3m

If you are affected by any of the issues raised in this story, support and advice is available via the BBC Action Line.

Watch Storyville - Deborah James: Bowelbabe In Her Own Words - on Monday 17 April, 21:00 BST on BBC Two or on BBC iPlayer.

Listen to a special edition of You, Me and the Big C podcast on Monday 17 April on BBC Sounds.