It began with an intermittent pain under my right rib.
It was 2021 and I was 48, too busy living life to take this unusual pain seriously. So I brushed it off.
That pain only got worse when I drank alcohol.
Even though I was only a social drinker I started to get terrible hangovers even if I only had a couple of glasses. Still, I never dreamed this was a sign that something was seriously wrong.
Over the following months I became increasingly fatigued. I went from going to the gym several times a week and being very active in my business, to not having energy to do anything.
After experiencing intense pain over two consecutive weekends in early 2022, I decided it was time to see my GP.
My first visit, I was told it was ‘just acid reflux’ and prescribed medication to help treat that.
When that ran out, my pain returned with a vengeance. This time, I was prescribed a different medication, but it turned out it was off the market.
Two days later my pain was worse than ever and the whites of my eyes, in my daughter Issy’s words, had turned ‘the colour of the inside of a Cadbury’s crème egg’ – I was now jaundiced.
We went to A&E and after a night of blood tests and CT scans, I was admitted, as they’d found a ‘suspicious lump’ on my liver.
An ERCP – a surgical procedure that uses an endoscope and X-rays to diagnose problems with the liver and bile ducts among others – was ordered and that’s when everything changed.
Lying on a bed waiting to be wheeled down for the procedure, the doctor said: ‘You do know what we’re dealing with here?’
‘No. No one’s told me anything,’ I replied.
‘Oh. You’ve got a cancer called cholangiocarcinoma,’ he said, matter of factly.
I had no time to really take in what was said.
Cholangiocarcinoma is bile duct cancer. Once considered rare, AMMF, the UK’s only charity dedicated to this type of cancer, says more and more people are being diagnosed with it every single day.
It is not, as was told to me by the so-called ‘specialists’ who were treating me, ‘a cancer that only affects men over the age of 65’. This cancer does not discriminate and the charity has seen cases rising among young people, particularly women, between the ages of 20 and 40.
When I woke up the next day after the ERCP surgery, I felt brand new. A stent had been placed into the bile ducts to unblock it and the relief was immediate.
But then the MacMillan nurses came in and handed me a leaflet about cholangiocarcinoma.
Life changed in an instant.
I felt devastated for not knowing anything about cholangiocarcinoma. But I was cross, too – at my GP for not spotting the signs but also at the general lack of awareness.
Luckily I found AMMF and was able to download a letter for the surgery to read all about the cancer and to put on display.
I’d felt they’d let me down by misdiagnosing me. At least this way, by displaying the letter on the wall of every treatment room, they wouldn’t forget about cholangiocarcinoma in the future.
Then, after posting about it on LinkedIn – where most of the 250 comments I received asked ‘what’s that?’ and ‘how on earth do you even say it?’ (it’s pronounced kol-angee-oh-car-sin-oh-ma) – I knew it was time to focus on my own treatment and health.
Signs and symptoms of cholangiocarcinoma
- In its early stages, there are few obvious signs and symptoms and those that do occur (malaise, fatigue and weight loss, pale stools, dark urine and itching) are non-specific to the disease and can occur from other cancerous as well as non-cancerous causes in that area, such as gallstones and inflammation of the bile ducts.
- In advanced stages, jaundice is the most common symptom (yellowing of the eyes and skin – although skin yellowing may be less obvious in people with darker skin types), dark urine, pale stools, and sometimes itching due to the cancer blocking the flow of bile. Jaundice is the most obvious and visible symptom associated with liver disease, both cancerous and benign.
For more on cholangiocarcinoma visit www.ammf.org.uk
I wanted to know everything I could about this cancer and, importantly, how to beat it.
I activated my private healthcare and, as surgery is currently the only form of ‘cure’ for this cancer, and as my tumour was small enough, in July 2022 I had a liver resection: removing the tumour, part of my liver and also my gallbladder.
In September, I started a follow-up course of chemotherapy and in March 2023 I was told I was cancer-free.
Words cannot describe the relief I felt.
Now, life could carry on, and I’d make the most of every day.
For a few months, that’s exactly what I did. I started dating my now-husband, Keith, got back to work and just enjoyed life.
Unfortunately, at my three-month monitoring scan I was told the cancer was back.
Instead of one big mass, I now had eight smaller tumours that were scattered across my liver, making further surgery impossible. My only hope was targeted therapy.
However, I then learned I have a very rare gene mutation, meaning I won’t respond to chemo or any targeted therapies now approved for use in the NHS.
It was another devastating blow.
Since then, I’ve tried multiple different drugs and treatments; each time thinking, ‘This is it. This will be the one to cure me.’
I have to be hopeful, I have to stay positive.
That’s why I’ve been making the most of every day. It’s why, when Keith proposed in August 2023, I said yes immediately and planned our wedding in just three months. It’s why we travel a lot and bank memories over buying things that we’d just throw away in a couple of years.
Because I can’t afford to take anything for granted anymore.
Now, though, I find myself at an impasse.
A few days ago, doctors told me they were out of options and I’ve been put on palliative care.
But I refuse to give up.
I know there are treatments out there that could help me. I’m on a global forum with cholangiocarcinoma patients and a lot of them in America and Australia are getting new and advanced treatments that aren’t yet available here in the UK.
For patients like me, this simply isn’t good enough.
I’m not going to just sit here and wait to die, I have a lot to live for, but now it’s up to me to push for the care I deserve.
That’s why, this Cholangiocarcinoma Awareness Month, I’m working alongside fashion legends Rankin and Dame Zandra Rhodes to put the spotlight on AMMF’s (the cholangiocarcinoma charity) Rethink Liver Cancer campaign.
I’ll be heading to the House of Commons on 26 February at a reception for MPs and NHS leaders to support a plan for a ‘Fairer Deal, Faster’ for people with cholangiocarcinoma in the NHS.
It’s high time that this cancer got the attention, funding and research that other cancers do.
It’s time the UK caught up with the rest of the world and invested in cholangiocarcinoma.
Maybe then, patients like me could have a positive experience. Maybe then we could be survivors, too.
As told to Emma Rossiter.
Originally published February 3rd, 2025.
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