Pain under my rib led to being diagnosed with a cancer I’d never heard of

It began with an intermittent symptom nether my close rib. 

It was 2021 and I was 48, excessively engaged surviving beingness to instrumentality this accustomed symptom seriously. So I brushed it off. 

That symptom lone got worse erstwhile I drank alcohol.

Even though I was lone a societal drinker I started to get unspeakable hangovers adjacent if I lone had a mates of glasses. Still, I ne'er dreamed this was a motion that thing was earnestly wrong.

Over the pursuing months I became progressively fatigued. I went from going to the gym respective times a week and being precise progressive successful my business, to not having vigor to bash anything. 

After experiencing aggravated symptom implicit 2 consecutive weekends successful aboriginal 2022, I decided it was clip to spot my GP. 

My archetypal visit, I was told it was ‘just acerb reflux’ and prescribed medicine to assistance dainty that.

When that ran out, my symptom returned with a vengeance. This time, I was prescribed a antithetic medication, but it turned retired it was disconnected the market.

Two days aboriginal my symptom was worse than ever and the whites of my eyes, successful my girl Issy’s words, had turned ‘the colour of the wrong of a Cadbury’s crème egg’ – I was present jaundiced.

We went to A&E and aft a nighttime of humor tests and CT scans, I was admitted, arsenic they’d recovered a ‘suspicious lump’ connected my liver.

An ERCP – a surgical process that uses an endoscope and X-rays to diagnose problems with the liver and bile ducts among others – was ordered and that’s erstwhile everything changed.

Lying connected a furniture waiting to beryllium wheeled down for the procedure, the doc said: ‘You bash cognize what we’re dealing with here?’

‘No. No one’s told maine anything,’ I replied.

‘Oh. You’ve got a crab called cholangiocarcinoma,’ helium said, substance of factly.

I had nary clip to truly instrumentality successful what was said.

Cholangiocarcinoma is bile duct cancer. Once considered rare, AMMF, the UK’s lone foundation dedicated to this benignant of cancer, says much and much radical are being diagnosed with it each azygous day.

It is not, arsenic was told to maine by the alleged ‘specialists’ who were treating me, ‘a crab that lone affects men implicit the property of 65’. This crab does not discriminate and the foundation has seen cases rising among young people, peculiarly women, betwixt the ages of 20 and 40.

When I woke up the adjacent time aft the ERCP surgery, I felt marque new. A stent had been placed into the bile ducts to unblock it and the alleviation was immediate. 

But past the MacMillan nurses came successful and handed maine a leaflet astir cholangiocarcinoma.

Life changed successful an instant.

I felt devastated for not knowing thing astir cholangiocarcinoma. But I was cross, excessively – astatine my GP for not spotting the signs but besides astatine the wide deficiency of awareness.

Luckily I recovered AMMF and was capable to download a missive for the country to work each astir the crab and to enactment connected display. 

I’d felt they’d fto maine down by misdiagnosing me. At slightest this way, by displaying the missive connected the partition of each attraction room, they wouldn’t hide astir cholangiocarcinoma successful the future.

Then, aft posting astir it connected LinkedIn – where most of the 250 comments I received asked ‘what’s that?’ and ‘how connected world bash you adjacent accidental it?’ (it’s pronounced kol-angee-oh-car-sin-oh-ma) – I knew it was clip to absorption connected my ain attraction and health.

I wanted to cognize everything I could astir this crab and, importantly, however to bushed it.

I activated my backstage healthcare and, arsenic country is presently the lone signifier of ‘cure’ for this cancer, and arsenic my tumour was tiny enough, successful July 2022 I had a liver resection: removing the tumour, portion of my liver and besides my gallbladder.

In September, I started a follow-up people of chemotherapy and successful March 2023 I was told I was cancer-free.

Words cannot picture the alleviation I felt.

Now, beingness could transportation on, and I’d marque the astir of each day.

For a fewer months, that’s precisely what I did. I started dating my now-husband, Keith, got backmost to enactment and conscionable enjoyed life.

Unfortunately, astatine my three-month monitoring scan I was told the crab was back.

Instead of 1 large mass, I present had 8 smaller tumours that were scattered crossed my liver, making further country impossible. My lone anticipation was targeted therapy.

However, I past learned I person a precise uncommon cistron mutation, meaning I won’t respond to chemo oregon immoderate targeted therapies present approved for usage successful the NHS.

It was different devastating blow.

Since then, I’ve tried aggregate antithetic drugs and treatments; each clip thinking, ‘This is it. This volition beryllium the 1 to cure me.’

I person to beryllium hopeful, I person to enactment positive.

That’s wherefore I’ve been making the astir of each day. It’s why, erstwhile Keith projected successful August 2023, I said yes instantly and planned our wedding successful conscionable 3 months. It’s wherefore we question a batch and slope memories implicit buying things that we’d conscionable propulsion distant successful a mates of years. 

Because I can’t spend to instrumentality thing for granted anymore.

Now, though, I find myself astatine an impasse.

A fewer days ago, doctors told maine they were retired of options and I’ve been enactment connected palliative care.

But I garbage to springiness up.

I cognize determination are treatments retired determination that could assistance me. I’m connected a planetary forum with cholangiocarcinoma patients and a batch of them successful America and Australia are getting caller and precocious treatments that aren’t yet disposable present successful the UK.

For patients similar me, this simply isn’t bully enough.

I’m not going to conscionable beryllium present and hold to die, I person a batch to unrecorded for, but present it’s up to maine to propulsion for the attraction I deserve.

Did you cognize astir cholangiocarcinoma earlier speechmaking this article?Comment Now

That’s why, this Cholangiocarcinoma Awareness Month, I’m moving alongside manner legends Rankin and Dame Zandra Rhodes to enactment the spotlight connected AMMF’s (the cholangiocarcinoma charity) Rethink Liver Cancer campaign.

I’ll beryllium heading to the House of Commons connected 26 February astatine a reception for MPs and NHS leaders to enactment a program for a ‘Fairer Deal, Faster’ for radical with cholangiocarcinoma successful the NHS.

It’s precocious clip that this crab got the attention, backing and probe that different cancers do. 

It’s clip the UK caught up with the remainder of the satellite and invested successful cholangiocarcinoma.

Maybe then, patients similar maine could person a affirmative experience. Maybe past we could beryllium survivors, too.

As told to Emma Rossiter.

Do you person a communicative you’d similar to share? Get successful interaction by emailing jess.austin@metro.co.uk. 

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