It all started with a nagging, intermittent pain under my right rib in 2021. At 48, I was too immersed in a busy life to pay much attention to this unusual discomfort, so I brushed it off as nothing serious.
However, the pain intensified whenever I drank alcohol. As a social drinker, I began experiencing severe hangovers after just a couple of glasses, yet I never imagined this could signal a deeper health crisis.
Over the following months, overwhelming fatigue set in. I went from hitting the gym multiple times a week and being highly active in my business to lacking the energy for even basic tasks.
After enduring intense pain over two consecutive weekends in early 2022, I finally visited my GP. Initially, I was diagnosed with acid reflux and given medication, but when it ran out, the pain returned worse than ever.
A second prescription failed because the drug was off the market. Two days later, my pain peaked, and my daughter Issy noticed the whites of my eyes had turned a yellowish hue, like the inside of a Cadbury's crème egg—I was jaundiced.
We rushed to A&E, where blood tests and CT scans revealed a suspicious lump on my liver. An ERCP procedure, which uses an endoscope and X-rays to examine the liver and bile ducts, was ordered, changing everything.
Lying on a bed before the procedure, a doctor bluntly informed me, "You've got a cancer called cholangiocarcinoma." I had no time to process it. Cholangiocarcinoma is bile duct cancer, once considered rare but now increasingly diagnosed, according to AMMF, the UK's only charity dedicated to this disease.
Contrary to what some specialists told me, it's not a cancer that only affects men over 65. AMMF reports rising cases among young people, especially women aged 20 to 40, showing it doesn't discriminate.
After the ERCP surgery, I felt immediate relief as a stent was placed to unblock my bile ducts. But reality hit when MacMillan nurses handed me a leaflet about cholangiocarcinoma, and my life changed in an instant.
I was devastated by my lack of knowledge and frustrated with my GP for missing the signs and the general lack of awareness. I turned to AMMF, downloading a letter for my surgery to display in every treatment room, hoping to prevent future misdiagnoses.
Sharing my story on LinkedIn, where most of the 250 comments asked "what's that?" or "how do you say it?" (pronounced kol-angee-oh-car-sin-oh-ma), I realized the urgent need for awareness and focused on my treatment.
Signs and Symptoms of Cholangiocarcinoma
In early stages, symptoms are vague and non-specific, including malaise, fatigue, weight loss, pale stools, dark urine, and itching. These can mimic other conditions like gallstones or inflammation.
In advanced stages, jaundice becomes common, with yellowing of the eyes and skin, dark urine, pale stools, and itching due to bile flow blockage. Jaundice is a key indicator of liver issues, both cancerous and benign.
For more information, visit AMMF's website.
Determined to fight, I activated my private healthcare. Since surgery is the only current "cure," and my tumor was small, I underwent a liver resection in July 2022, removing the tumor, part of my liver, and my gallbladder.
Follow-up chemotherapy started in September, and by March 2023, I was declared cancer-free, bringing immense relief. I embraced life, dating my now-husband Keith, returning to work, and savoring every moment.
Unfortunately, a three-month scan revealed the cancer had returned, with eight smaller tumors scattered across my liver, ruling out further surgery. My hope shifted to targeted therapy, but a rare gene mutation meant I wouldn't respond to NHS-approved treatments, another devastating blow.
I've tried multiple drugs and treatments, clinging to hope and positivity. This mindset led me to say yes when Keith proposed in August 2023, planning our wedding in three months, and prioritizing travel and memories over material possessions.
Now, I face an impasse. Recently, doctors said they're out of options, and I've been placed on palliative care. But I refuse to give up. Through a global forum, I've seen cholangiocarcinoma patients in America and Australia accessing advanced treatments unavailable in the UK.
For patients like me, this disparity is unacceptable. I'm not waiting to die; I have too much to live for. That's why, during Cholangiocarcinoma Awareness Month, I'm collaborating with fashion icons Rankin and Dame Zandra Rhodes to spotlight AMMF's Rethink Liver Cancer campaign.
On February 26, I'll head to the House of Commons for a reception with MPs and NHS leaders, advocating for a "Fairer Deal, Faster" for cholangiocarcinoma patients. It's time this cancer receives the attention, funding, and research afforded to others.
The UK must catch up globally in investing in cholangiocarcinoma. With better resources, patients like me could have positive outcomes and become survivors, too.
