Rebellious Hope: Deborah James, Bowelbabe

I’ve followed London-based Deborah James, aka Bowelbabe, on Instagram for years now. I don’t know her personally, but if I recall correctly, I found her through the account of my late friend Chiara D’Agostino. You know how it is on social media: Cat people find each other, cosplay people find each other, and people with cancer find each other too. Unfortunately, the latter is how Deborah and Chiara intersected.

For five years, Deborah has endured treatment for terminal bowel cancer that was diagnosed when she was just 35. During this time, she poured her effervescent personality and what she calls her “rebellious hope” into raising awareness about bowel cancer symptoms (“Check your poo!” as she says).

CLICK FOR ONE OF DEBORAH’S DYNAMIC VIDEOS.

Like Chiara, Deborah was a brilliant advocate for herself, pursuing clinical and experimental trials, and outliving her early prognosis. But there’s only so much a body can take, and in recent days Deborah has had to stop active treatment and switch to end-of-life care. Now at home with her family, Deborah has used some of her remaining time to set up the Bowelbabe Fund for Cancer Research UK to fund clinical trials; research into personalized medicine; and awareness-raising. She wrote on Instagram: “All I ask if you ever read a column, followed my Instagram, listened to the podcast or saw me dressed as a poo for no reason, please buy me a drink to see me out this world” by donating the drink’s cost to the fund. (I donated the cost of a bottle of Chateau D’Esclans Cotes de Provence Rose Whispering Angel 2021.) The original fund goal was £250,000. In 24 hours, it had raised £1 million, and as of this writing, the fund has raised £3.3 million and counting. It’s an extraordinary legacy, and one that, thankfully, Deborah has been able to see for herself — making her feel, in her words, “utterly loved.”

DONATE TO THE BOWELBABE FUND.

I wasn’t planning to post about Deborah here, until I read her last interview with Alice Thomson for the Times of London. It starts:

“The sun is shining, the lawn is mown, the wood pigeons are cooing in the oaks and Deborah James is dying. She sips a glass of champagne and lies on a bed of cushions made by her 14-year-old son. ‘I’m going to try not to sob, I am only just getting my head round my situation,” she says. “I just want to do one last interview.”

I was so moved by the writing, as well as Deborah’s mix of honesty, practicality, and whimsy — she doesn’t want her ashes to be scattered, saying, “I’m the kind of person that wouldn’t mind staying in the top drawer in the kitchen for a while” — that I had to share. A link to the article in Deborah’s Instagram stories got me past the Times of London’s paywall. Hopefully, going that route or clicking the photo below will work for you. (If not, you can at least read Deborah’s own column in The Sun here.)

I 100% credit Deborah with getting me to the doctor this year for a colonoscopy (an exam used to detect changes or abnormalities in the bowel/colon and rectum.) I was running years late. Colonoscopies used to be recommended starting at age 50 in the U.S., but due to a surge in bowel/colon cancer in younger people, the recommendation was recently changed to age 45. I had figured 50 was fine, and, hey, a couple of years after 50 seemed like no big deal either, because I had no symptoms. Then … whoa! A pandemic! A good reason to keep avoiding a colonoscopy. And I doubt I would have gone this year, age 54 and post-COVID-vaccine, because I still had no alarming symptoms, except that I thought, “Bowelbabe would be disappointed in me.”

Everything turned out fine, healthwise. Like everyone else who has had the procedure, I’ll tell you the colonoscopy itself was nothing because you’re under the best anesthesia, but the prep is gross. The good news is that if you’re like me and prefer multiple ginormous prep pills to bad-tasting prep liquids, you’ve got that option now. Tip: The pills might not be offered to you when you make your appointment because they’re still pretty new, so don’t be shy about asking for them. Another tip: I’m not sure my insurance would have covered the pills, but my doctor had samples from the drug company and gave them to me, so ask for that too. And, please, no matter what your age, if you have these symptoms, especially multiple symptoms …

• Bleeding
• Obvious change in bathroom habits (going a lot more or a lot less for three weeks or longer)
• Weight loss (when you’re not trying)
• Extreme tiredness (anemia from internal bleeding causes profound fatigue)
• Lump or pain (in your abdomen or backside)

… you must go to the doctor and insist on a colonoscopy. Don’t be fobbed off by a diagnosis of irritable bowel syndrome from someone who hasn’t even looked at your insides because “you’re too young for cancer.” I know this is asking for a lot in the U.S. where health care costs a fortune even if you’re lucky enough to have insurance that covers preventative screenings. That’s why medical bankruptcy is a thing here. And that’s why we should always be fighting for an expansion of health-care coverage, instead of voting for Republicans who spent years trying to repeal the Affordable Care Act and who would love for you to rely on employer-provided health care so you can never leave your shitty (no pun intended) job. The thing is, cancer treatment in the U.S. can cost — literally — a thousand times more than the screening does. “An ounce of prevention is worth a pound of cure” is not just a quaint saying. So do what you need to do: Get checked out and make Bowelbabe proud.