found a suspicious lump on liver
Photo by Charlie Shrager

I Thought It Was Just Rib Pain—Turns Out, It Was a Rare Cancer!

“It began with an intermittent pain under my right rib.” In 2021, at the age of 48 and too busy living life, I dismissed the discomfort. Over time, the pain intensified—especially when I drank alcohol. Despite being a social drinker, even a couple of glasses brought terrible hangovers. I never imagined these symptoms were harbingers of something far more serious.

As months passed, fatigue replaced my once-active lifestyle. Gym sessions and the vigorous demands of running my business gave way to overwhelming exhaustion. Two consecutive weekends of intense pain in early 2022 finally forced me to visit my GP. My initial consultation resulted in a diagnosis of ‘just acid reflux’ and a prescription for medication, according to Metro.co.uk.

However, once that medication ran out, the pain returned with a vengeance. A new medication was prescribed, but it turned out to be off the market. Just two days later, my condition worsened dramatically. My daughter, Issy, described the change in my eyes, saying they had turned “the color of the inside of a Cadbury’s crème egg”—a clear sign of jaundice.

A subsequent visit to A&E led to a series of blood tests and CT scans, ultimately resulting in my admission after doctors discovered a ‘suspicious lump’ on my liver. I was scheduled for an ERCP—a surgical procedure using an endoscope and X-rays to diagnose issues with the liver and bile ducts.

While waiting on the bed to be wheeled into the procedure, the doctor asked, “You do know what we’re dealing with here?” I replied, “No. No one’s told me anything,” to which he stated matter-of-factly, “Oh. You’ve got a cancer called cholangiocarcinoma.” In that moment, my life changed forever.

Cholangiocarcinoma, or bile duct cancer, was once considered rare. According to AMMF—the only UK charity dedicated to this cancer—cases are on the rise among not only older men but also younger people, particularly women aged 20 to 40. I experienced a fleeting moment of relief after an ERCP surgery, where a stent was placed to unblock my bile ducts. Yet, the stark reality set in when MacMillan nurses handed me a leaflet on cholangiocarcinoma.

Determined to learn and fight, I activated my private healthcare. In July 2022, I underwent a liver resection, which removed the tumour, part of my liver, and my gallbladder. Following chemotherapy in September, I was declared cancer-free in March 2023—a relief that was short-lived.

At a three-month monitoring scan, I was told the cancer had returned in the form of eight scattered tumours, rendering further surgery impossible. A rare gene mutation meant I would not respond to standard treatments.

Despite being placed on palliative care, I refuse to give up. I’m connected with a global forum of patients and am now working alongside fashion legends Rankin and Dame Zandra Rhodes during Cholangiocarcinoma Awareness Month. On 26 February, I will join MPs and NHS leaders at the House of Commons to campaign for a ‘Fairer Deal, Faster’ for cholangiocarcinoma patients. It’s high time the UK invested in research and treatment for this devastating disease, so that survivors like me might one day prevail.

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