In March 2020, Emily Georghiou made a visit to her GP. For the past few months, she’d been looking pale and feeling very tired: it came as a relief when a blood test came back telling her she had anaemia. “I was a working mother aged 43 with twin boys, so I expected a degree of exhaustion but this was really debilitating,” she says. “I was given a prescription for iron tablets to sort me out.”
Except they didn’t. So the public sector policy adviser went back. Again and again. She returned to her GP nine times, feeling run down and with low mood but seldom saw the same doctor twice.
When two more blood tests revealed no change, Emily was simply given more iron pills. No explanation was offered as to why she was iron anaemic or indeed why the iron pills still weren’t working, two and a half years on.
“I became more tired, more unwell. I had stomach upsets and then terrible pains in my abdomen and eventually on Mother’s Day last year I went to A&E, because I thought it might be appendicitis,” says Emily, now 46.
She waited, doubled up in distress, for eight hours. A blood test was taken and her pains not so much diagnosed as dismissed – no further tests were carried out. “The doctor told me the pains were ‘probably muscular’, then, as he walked away, he turned his head over his shoulder and called back ‘Oh, and you’re iron anaemic, so you should see your GP about that’.”
No alarm bells rang. Not one medic looked at her notes and made the connection between iron anaemia, abdominal pain and bowel cancer; Emily was deemed too young even to test for it.
Nobody carried out a faecal immunochemical test (FIT) – commonly known as a poo test – which shows up tiny traces of blood. The FIT serves as an indicator of a disease that has a 92 per cent cure rate if caught early.
Today, sitting rather incongruously in a straight-backed chair surrounded by the Lego-strewn paraphernalia of family life, Georgiou has the upright poise of an athlete – or a woman with multiple spinal fractures. And stage four cancer.
The combination of chemotherapy drugs and steroids being used to treat her has caused early-onset osteoporosis. It is harrowing to hear her speak.
“I can’t bend down to kiss my boys at bedtime,” she says quietly. “ I used to swim four or five times a week but not anymore. I can’t work. It hurts to walk. At night I can’t sleep on my back and the pain is so severe I have to take opiates just to change position.”
Emily’s husband, Glenn Pougnet, is on the sofa. Tears come easily to him. He runs StreetSmart, a homeless charity which fundraises via participating restaurants. Diners are asked to donate an extra £1 after they pay the bill; in 99 per cent of cases they do.
He understands the kindness of strangers; in recent times he has come to rely personally on that human, humane instinct to reach out and help.
Over the past 12 months Glenn has juggled work with caring for Emily and their sons, Ernie and Leo, now aged five. He drives her to hospital appointments at a snail’s pace, avoiding speed bumps and swerving potholes; a single bump could shatter more of her bones.
In the space of a year Glenn has watched his wife’s condition deteriorate, their hopes and dreams darkening beneath the terrible shadow of cancer.
“I feel really powerless and I blame myself for not fighting harder and sooner to have Emily diagnosed” he says. “Why didn’t I march into the GP and demand to know the cause of her iron anaemia?”
It’s gut-wrenching to hear him. So too is the terrible revelation that Emily blames herself; for allowing herself to be fobbed off. For placing her faith in the changing roster of GPs who prescribed her pills but never enquired any further.
“I assumed that my GP would look after me,” she says. “Of course I hoped I would get the treatment I needed when I needed it. Looking back it sounds ridiculously naive – but isn’t that how we all feel?”
By October last year Emily was feeling so awful that she went back to her GP. “The locum decided to give me a FIT, not realising it wasn’t policy at my practice to give someone as young as me a test,” she says.
“Given my symptoms I should have been tested far sooner. A poo test costs the NHS a few pounds but nobody was in charge of me, there was no continuity of care; if there were, the outcome could have been entirely different.”
The test results were so abnormal that Emily was “fast-tracked” for a colonoscopy within two weeks, where a camera would be inserted into her large intestine. She wasn’t told she had cancer; the doctor said: “I don’t want to alarm you but we’ll put you on the cancer pathway to get you seen quickly.”
She was sent home where she developed night sweats, headaches and a continuous cough. Then, days before her appointment, Emily’s condition deteriorated and she was struggling to breathe. “I took myself to hospital with my iPad and a cushion, prepared to wait. I had no idea it would be 12 hours,” she says. “Eventually at 6am I was seen by a doctor and given a mini-ultrasound in the cubicle. I was told again, “We have to say it might be cancer or we won’t be able to get you a scan today.”
After the scan, a consultant came and said there was “a mass” on her liver. Emily, exhausted and bewildered as she was in such discomfort – nobody had given her any pain relief – she had no idea what he meant.
“I was literally wondering what he was on about but then I was put in a side room and someone gave me a cup of tea,” she recalls with a rueful smile. “I remember thinking ‘this is a nice rest’.”
Then came the bombshell. The doctors reported they had also seen something on her bowel. “That was when I realised I didn’t just have cancer, I had secondary cancer – because I knew cancer doesn’t usually start in the liver. I was like a rabbit in headlights; sat on my own with that nightmarish knowledge swirling about in my head.”
This was in November 2022 by which time bowel cancer campaigner Dame Deborah James, who was belatedly diagnosed with stage three bowel cancer in 2016, had already died in June of that year.
“I had no idea then that I had exactly the same colorectal cancer. Everything she campaigned for – early diagnosis, an end to the ‘you’re too young to have bowel cancer’ misconception, I stand by.”
Bowel cancer affects more than 42,000 people in the UK each year. Sufferers are typically over 50, but the number of patients who are younger is growing every year. One in 10 have a type caused by the BRAF genetic mutation which affects younger people. Like Dame Deborah, Emily has that mutation which is aggressive and incurable.
Back in hospital, where Emily was still reeling from the scan results, Glenn had sorted out an emergency babysitter and joined her. A nurse came in, holding a piece of paper that was covered in numbers printed in red and words like “tumour”, “nodes” and “metastases”.
“In the movies a senior doctor sits down, looks you in the eye and says ‘I’m so sorry to tell you…’ We had a nurse who wasn’t unkind but wasn’t clear either; it was all medical speak, which is alienating and confusing just when you desperately need clarity,” says Emily.
It transpired she had a 4in mass in her liver the size of a mango and a 1.5in tumour on her bowel. Her cancer was at stage 4; the most advanced form.
She was told she would need a liver operation and bowel surgery preceded by three months (12 rounds) of chemotherapy. “It was devastating,” Emily says. “For me to survive we would need everything to go our way but crucially it wasn’t a complete death sentence.” She started chemotherapy in December 2022.
After 10 sessions, scans showed the chemotherapy wasn’t working; her cancer was progressing and had spread to her lymph nodes. Emily was immediately placed on the second-line treatment, cetuximab with encorafenib which is used to treat colorectal cancer with BRAF mutation and known as Beacon.
It is this targeted therapy that Emily is undergoing now. But if it fails to work there is nothing more the NHS can do for her other than give her end-of-life palliative care. It represents yet another bitter blow. “There are drugs being used elsewhere in the world that can be effective but they haven’t been licensed here because post-Covid there’s been a downturn in the number of clinical trials being carried out,” she says.
For that reason the couple have set up a GoFundMe page, to raise money for possible future treatment abroad, to raise awareness that poo tests save lives – to raise Emily’s spirits in the depths of despair.
“We haven’t asked about my prognosis,” she says. “I don’t want to go there.” All I know is that people can be on Beacon for months or years.
“I hope I will do the school run again, I hope I get back to work, I hope someday we can maybe even have a little holiday as a family,” she says. “As it is, we live scan to scan and it’s horrible.”
So far donations have reached almost £48,000. The target is £60,000.
“Am I angry? I can’t go down that route because anger would be really harmful,” she says. “I have received excellent care and care that wasn’t what it should have been. I want to look forward; Glenn and I have been through every emotion and we’ve chosen to dwell on hope. What else can we do?’