When Lord Sumption told Deborah James (@bowelbabe), a teacher turned presenter with stage four bowel cancer, that her life was ‘less valuable’ than others in a TV debate, all hell let loose. Arguing we must not lose our moral compass in the pandemic, Deborah is also determined to change the way we talk about the disease

A deeper rage

Over the last 24 hours James admits she has reached an understanding with Sumption. “We exchanged amicable emails,” she revealed in her The Sun column. “And while we agree to disagree on certain aspects, including the use of the word ‘value’, I believe we agree on two key points. The first is that cancer services should not be compromised, and secondly, that life is indeed precious.

“In the heat of the moment yesterday, I felt a spark of anger deep inside me, and so I challenged him asking who he is to put a value on life? Then in the aftermath, I was inundated with a barrage of requests from people asking me how I felt as a cancer “sufferer”. From there, the small spark of anger became a deeper rage. I am cancer patient, I’m not a sufferer.

“With cancer, early diagnosis really does save lives. Catch the disease early enough and in lots of cases it can be treated. But wait and catch it after it’s already spread and the delay can prove deadly. I have read many messages recently from strangers telling me they are now facing a late-stage cancer that wasn’t detected early enough, because of delays due to Covid.

All of this only serves to make cancer patients, and those treating cancer patients, feel like actually what Lord Sumption said might be true, maybe our lives aren’t as valuable. Since Covid arrived on our shores a year ago, cancer has taken a backseat. Where once cancer was the ‘Big C’, now it feels more like the ‘Forgotten C’.

Diagnosed with incurable bowel cancer in 2016, James always lives her life to the utmost and says she feels more alive now than at times before her diagnosis. Incredibly, early last year, the BBC Radio 5 Live podcast presenter was told a scan showed no evidence of the disease. On paper, that meant she was cancer-free, but her cancer returned late last year.

Over the last four years, Deborah has been in remission following vigorous treatments including radiotherapy, chemotherapy and surgery (she had tumours of the stage 4 cancer removed from her liver). ‘I’m still scared about the future,’ Deborah tells us.

Deborah has made no secret about how her love of exercise helps her keep a positive mindset, so much so that she hopes to one day run in the London Marathon. “I’m rebuilding myself, and part of that is having a goal to work towards. It’s important. And I’ve always wanted to complete the London Marathon. I have so many side effects from my treatment – like coping with painful scar tissue – so training can be a struggle, but mentally, it helps me deal with uncertainty.” Deborah adds, “It’s now or never. I’m raising money for London’s Royal Marsden Hospital, which is where I’m treated. I’ve not diary dated anything, because I shouldn’t be here. I planned for my funeral, not the future.”

Over 42,000 people are diagnosed with bowel cancer in the UK every year, making it the fourth most common cancer in the UK. In 2018, @bowelbabe wrote down her thoughts on reframing the narrative of ‘beating’ cancer, and this is what she had to say:

“By the time I had turned 35, I found myself  part of a club I never wanted to join: The Cancer Club – a seemingly indiscriminate gathering which one in two of us, at some stage in our lives, will inevitably join. Following my diagnosis, I unexpectedly found myself attacked by a sub-section of the wellness industry, which was designed to sell me the idea that my cancer was somehow my fault. The view, expressed through targeted adverts on an array of social-media platforms, was that not only was my cancer the result of something I’d done wrong, but that it was something I could overcome if I only tried hard enough – a dangerous message at a deeply vulnerable time in my life.

My appalled reaction was shared by my good friend Rachael Bland, a BBC Radio 5 live newsreader and presenter, who died in September 2018. She had been blogging about her experience of cancer, and wrote that she found, the endless ‘have you tried…’ messages frustrating.  What she said then is now more poignant than ever.

I find it insulting that people are basically saying, ‘You’re not doing enough to save yourself.’ I thought, ‘If I die from cancer, if anyone writes that I’ve ‘lost my battle’ with the disease I’ll be furious from beyond the grave – because I’ve fought just as hard as everyone who’s survived, it’s just my cancer might be too aggressive to fix.’

Cancer, as the figures show, can be as indiscriminate as it is pervasive. Cancer Research UK states that four in ten strains are from ‘preventable causes’ – most overwhelmingly, smoking, which can account for up to 86 per cent of cases of lung cancer and the majority of the ‘preventable’ bracket. While that means six in ten cancers are deemed unpreventable, the truth is that most of us, when faced with the words ‘you have cancer’, are left feeling like we did something wrong. And yet, I know I didn’t. I’m the vegetarian who got bowel cancer. Despite the fact that I work out four times a week, haven’t eaten meat for 25 years and tick every low-risk box, in December 2016 my world came crashing down.

This fight language is an unwelcome pressure

A busy mum-of-two, I’d been feeling tired, holding down a full-time job as a deputy head teacher in the months leading up to my diagnosis, and hardly noticed the change in my bowel habits until I started passing blood. Six months later, my worst fears were confirmed when doctors found a 6.5cm bowel tumour and seven lung tumours, too. Mine was a cancer diagnosis that the statistics say only eight per cent of people will survive. I was blind-sided and everything I knew changed. But what I hadn’t expected – while working with my medical team to fight my multiple cancers and strive to retain a degree of normal life as a parent, employee and friend – was to be further goaded by an industry that was telling me it was up to me to do ‘more’.

I couldn’t have foreseen the onslaught of directly targeted adverts saying, ‘I cured my cancer, and you can too’, or the ‘I know you can beat this’ messages that ring through social media, plus a wave of wellness writing that is, at best, misconceived. As well-meaning as this fight language might be, it’s an unwelcome pressure – as research proves.

A report by Macmillan states, ‘The perceived need to “fight” cancer and remain positive is having a negative effect on people living with the disease.’ Separate research by YouGov found that one in four people (28 per cent) said they found it difficult to talk honestly about their feelings around the disease, and a further 28 per cent said they felt guilty if they couldn’t remain positive. With the global wellness industry worth an estimated $3.7 trillion [about £2.8 trillion], and preventative and personalised medicine being the most rapidly growing sector within it, no wonder everyone is trying to cash in on convincing us they have the solution. Direct messages and adverts on social media, often accompanied by sales pitches of various products, sent in reaction to the use of the word ‘cancer’ on my platforms, have included claims that ingesting apricot kernels and turmeric produce better survival rates than conventionally researched proven routes, like chemotherapy.

Messages like these are upsetting, but also dangerous. Martin Ledwick, head information nurse at Cancer Research UK, says, ‘We often hear from people who’ve been told by well-meaning friends and relatives that they have to “fight” or must “stay positive”. When a cancer patient is feeling ill and distressed, comments like these can be unhelpful. More often than not, what they need is for those around them to hear their distress and concerns. Feeling the need to try to take control of the situation can lead some patients to consider alternative therapies, especially when these are sold as “miracle cures”.’

Ledwick adds, ‘There’s no evidence that a change in diet or alternative therapies can treat cancer. In fact, in some situations, the latter could be very harmful. Acupuncture or massage alongside conventional treatment might improve general well-being – but anyone receiving cancer treatment should always check with their doctor before using complementary medicines, as some may have an adverse effect. It’s really important that patients speak to their doctor before making any decisions.’

The truth is, fighting cancer isn’t an exact science – and sometimes, no matter how much you want to beat it, you can’t. By no means am I dismissing the guidance that exercise and a well-balanced diet can in fact reduce your cancer risk, or improve your mental well-being, but we also have to acknowledge that, sadly, we can’t totally cancer-proof our lives. We need to remember that those who don’t ‘beat cancer’ haven’t lost. We must read behind the headlines of the ‘magic cures’ and realise that sometimes we are doing our best; but we can’t all be the lucky ones. Whatever the future holds for me, all lives are valuable, including mine and yours.”

World Cancer Day on February 4 raises awareness of cancer and encourages its prevention, detection, and treatment. For more information or to make a donation, see cancerresearchuk.org

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