Woman with rare liver cancer forced to go to Turkey for transplant as she 'doesn't meet NHS criteria'
Warning: This article contains discussion of cancer which some readers may find distressing.
Florence Moffat-Charles first started feeling unwell in November 2023, suffering from a series of 'random' symptoms.
Like most people do, though, she shrugged it all off as a sign of her busy work life and having just got married to husband Josh.
However, as the weeks passed, the symptoms didn't go away, and in January the following year, the Kendal woman was diagnosed with Primary Sclerosing Cholangitis (PSC), a rare and chronic liver disease where the bile ducts become inflamed and narrow, leading to a build-up of bile that can further damage the vital organ.
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"I had nausea, I was really tired and I just kept shrugging it off as like ‘oh I'm busy at work’ and um ‘oh we'd literally just got married I was like just overdone it a little bit’, so it took a lot for me to initially get myself to the doctors," the 31-year-old tells LADbible.
"We did some blood tests and my liver function results were wild, and it was from that point everything kind of happened quite quickly.
"I think my doctors were really concerned and things got serious quite fast. I think looking back I now know that they were obviously concerned at the time about cancer and they were looking for malignancies but what came out of it was a diagnosis of PSC. And that in itself was life changing."
"It was really invasive"
Over the next 11 months Florence underwent several procedures to stretch her bile ducts, but by November 2024 she was in hospital again and things had got worse, with her being told she was going to need a transplant.
She knew this could have been a possibility, but then her specialist told her they were worried she had cancer and that along with her transplant assessment they would be looking for cancer cells in her bile ducts.
"It's a really invasive procedure and it's also a really difficult cancer to diagnose," Florence explains.
"It took quite a lot of procedures where they look at these cells and they ultimately make a decision on whether it looks suspicious enough to be classed as cancer.
"There was quite a big question mark over it and they decided that it was. As is common practice, we sought a second opinion. They wanted to go through all the same rounds of testing, so that was again super invasive."
From January to April 2025, Flo and Josh went between being 'told it was cancer' and then 'told it wasn't cancer' before the medical opinion settled on the diagnosis of Cholangiocarcinoma (CCA), or bile duct cancer.
"It's hard hearing it once, but hearing it twice as well just was gut-wrenching in terms of how it felt," Josh, 32, adds.
"We had this hope that it wasn't, and then the transplants get viable, and then all of a sudden that was sort of ripped away from us when they decided to do more digging and reconfirm it.
“We constantly said that we were just getting the bad flip of every coin toss. It just felt that if there was something bad was going to happen it was always going to be the worst outcome from every situation that we were in."
'Chemo parties'
Diagnosed at stage four, Flo had to go to a second hospital to find a doctor who would treat her, and after convincing the consultant she was strong enough to handle it she faced things head on, making parties of her chemo sessions complete with mocktails and party hats.
"I just wanted to find some positivity and some light-heartedness and to make it feel less daunting. So I said, ‘I'm going to wear a party hat every time I have chemotherapy’," she recalls.
"Fridays became chemo party days and I started posting about it online, and people found a way to identify with it and it was a way for people to reach out and talk to me about something, like recognise what I was going through but in a nice way because a lot of people don't know what to say when you tell them you've got cancer and you've got chemotherapy.
"Prior to my own diagnosis, I didn't really know what cancer treatment looked like for someone and I do think it can be quite daunting for some of my friends when they come and sit with me.
"They don't know what they're walking into and so it kind of shows them this is what I'm going through, this is real and it I think they then find it easier to support me because it opens up the conversation."
'A viable candidate for a live liver transplant'
Surgery is now Flo's only option; despite twice trying to get a transplant through a clinical trial, the NHS rejected her as she 'doesn't quite meet the criteria', meaning they have been forced to look abroad.
Flo and Josh recently heard from another couple in the CCA online community who had been to Turkey for a transplant.
With only palliative care available to her in the UK, Flo decided to follow in their footsteps and earlier this month she and Josh travelled to Turkey for a series of compatibility tests to see if he's an eligible donor for a transplant.
"The main thing is that you have to be a blood group match, you have to be sort of like similar weight, height, fit and well in yourself," he says.
"I think once it becomes a potential option to do for your partner, you do it without even questioning it or even thinking, it's just what you feel like you should do."
Flo says that Josh had been 'prepared to do it for me in the UK' when getting a transplant for her PSC had been discussed before the cancer overtook it.
They've had a series of scans that revealed Flo is 'a viable candidate for a liver transplant', but there are some complications with the anatomy of Josh's liver, which means he could be a donor but doctors have recommended they look for other potential donors who might be a better match.
For now they're focused on the 'incredibly positive news' that Flo can get a transplant, and they'd have to wait before any operation anyway, as they've got to wait for the immunotherapy Flo is on to leave her system, otherwise there's a higher chance of her body rejecting the transplanted organ.
While their path lies before them the cost of the surgery, care, travel accommodation and all the other ways a serious illness can hit a family in the pocket mean they're in need of support.
So the couple have set up a GoFundMe, which you can donate to here, to raise £200,000, which will go towards supporting Flo's liver transplant and her post-surgery recovery.
The Kendal couple are also raising money through their LinkedIn pages and keeping people in the loop about what's going on, which you can see here, where they've included the criteria for other possible donors who could help save Flo's life.
They've appealed to their friends and family aged between 18 and 55 who have the right blood type, BMI and physical health who could be free to donate part of their liver.
'Resetting the clock'
Josh said this was their window of opportunity to get a transplant done 'whilst Flo feels strong enough', but it's not lost on Flo how big a decision this is and what it means for her future.
She says: "This time last week I still hadn't got my head around it. It was a big thing for me to consider this because obviously it is a huge procedure in itself, it's life changing.
"There's drugs that I would need to be on for the rest of my life, and obviously there's a whole recovery period, and also sadly it wouldn't cure the PSC, it would just reset the clock."
If the transplant ends up being a success then the couple want to finally go on their honeymoon.
They tied the knot a while ago but they'd planned to go in January 2024, which is when Flo was diagnosed with PSC, and they tried again the same time next year which is when she was diagnosed with cancer.
"The honeymoon may not look the same as what we have planned but I think for us it would be about having an adventure," she said.
Josh agreed, explaining the couple had been forced to say 'no' to all sorts of opportunities and the chance for them to say 'yes, we're going to go on an adventure' would be incredible.
Flo said they could only go 'after we've written thousands of thank you cards to all the incredible people who have donated to support us'.
If you’ve been affected by any of these issues and want to speak to someone in confidence, contact Macmillan’s Cancer Support Line on 0808 808 00 00, 8am–8pm seven days a week.
Joe Harker