A mum given just three months to live after a doctor misdiagnosed her cancer as the menopause has spoke of her astonishment at being told she is now in remission. Caroline Guy, 56, was left heartbroken after being diagnosed with stage 4 bowel cancer which had spread to her liver and ovaries in January 2020.
Doctors gave her the devastating prognosis that the cancer was terminal and that she only had around three or four months to live. But Caroline refused to give up hope and continued to undergo gruelling rounds of chemotherapy to shrink the tumours at Nottingham University Hospitals.
Six weeks ago she went under the knife for extensive surgery at the city's Queen's Medical Centre where she had a full hysterectomy and part of her bowel removed. And following further tests Caroline was left gobsmacked to be told she is now cancer free, which she has described as "a miracle."
The mum-of-two previously had her tell-tale symptoms of a swollen stomach dismissed in 2019 by a GP who told her it was probably down to the menopause. She even Googled her symptoms and asked the doctor outright if it was bowel cancer to which he replied it wasn't and sent her on her way.
Caroline said: "I felt sluggish, I just didn’t feel right. My stomach was swollen - I’d Googled my symptoms and I actually asked him outright if I had bowel cancer, and he said no.”
In January 2020, Caroline visited her husband Adam in Saudi Arabia where she woke up one night in agony. She added: “I was in pain walking, I looked seven months pregnant, and I woke up one night and was violently sick. I just felt horrendous.”
Caroline was rushed into hospital in Saudi Arabia and within four days she’d had x-rays, scans, MRI, blood tests. A consultant brought her husband and youngest daughter Gabrielle into see her where they delivered the tragic news.
Caroline added: “When I saw their faces I thought this is not good. My daughter couldn’t look at me. I couldn’t take it in. I just said ‘How long have I had it? And ‘am I going to die?’”
The surgeon had told her husband it was "very bad", adding: “You’re looking at three to four months."
She added: “They didn’t tell me that at the time. He was still picking our daughter up off the floor – they had to give her oxygen. I can laugh now but it must’ve been like something from a Carry On film.”
At the end of January, Caroline was referred to the head of oncology who told her to stay positive and to "steer clear of Google". She was classed as inoperable and incurable, and started a course of chemotherapy and a targeted drug, Cituximae.
Caroline returned to the UK in September to see her daughter, Hollie, in Nottingham – and immediately caught Covid and had to isolate. She said: “It was scary, the thought of coming back to England, worrying would I still get my treatment, because I’d done so well in Saudi, but I had to come back. I had to see my family”
Caroline registered at Nottingham's City Hospital, where scans showed the tumour had reduced in size, and she now had more like two years to live. She added: “I was heartbroken, I didn’t want to hear a timescale, I was doing really well.
"I continued with the fortnightly chemotherapy and Cituximae. I had a pump fitted and I’d go away and have chemotherapy for 48 hours at home.
“It’s been a long hard process, but I have never had my treatment stopped. And the staff were absolutely marvellous – they were under tremendous pressure. Nurses that should’ve finished were still there hours after their shift had ended, because they can’t just walk away when machines are bleeping and patients need attention.”
Scans revealed that the chemotherapy had helped shrink all the tumours and she could have surgery, but it would be a "huge operation".
Caroline said: “I said yes please. The only way you can beat bowel cancer is with surgery, to remove the primary cause. I knew that if I did that, the cancer might come back but if it did come back I would deal with it.”
Caroline was transferred to the Queen’s Medical Centre and met surgeons Alastair Simpson and David Humes, who she nicknamed Ant and Dec. They removed part of her bowel and performed a full hysterectomy and following a histology and other tests they confirmed she was in remission.
She added: “The surgeon looked at me and said you’ve got no cancer. I said ‘are you sure? I just couldn’t believe it. It’s a miracle. It cost £110,000 for my treatment in Saudi – my husband’s retirement fund – because I didn’t have insurance – I got all my documents through a week after I was diagnosed with cancer.
“The money it cost for private care – even though it was amazing – it doesn’t touch what I’ve had done here with the NHS, and the NHS gets such a bashing. For the surgeons to say ‘we’ve got it all, you’re cancer free’ – how can I thank them?
"How can I thank the NHS? Some of the staff are like family. The amount of people who have been involved with my care, and they have all been wonderful. I’ve met the Crown Prince of Bahrain, I’ve met Professor Stephen Hawkings before he died, and I’ve met David Jason… and I’ve met Alastair and David – and they are part of my VIP list."
Caroline will be in remission for five years and will be monitored every three months by her oncologist. Husband Adam is now is returning to England at the end of the year and the couple plan to buy a house in Nottingham to be near daughters Hollie and Gabrielle.
Caroline said: “The last two and a half years has been the strangest time, a time to re-evaluate. It’s made me a stronger person, stronger than I thought I could be. I’ve had dark thoughts, but I’ve always felt the brighter thoughts have overshadowed them. I have a permanent smile on my face.
“I don’t fear anything any more, because nothing can be as bad as being told you have a cancer that is incurable and terminal. I’m a positive person but of course I had those thoughts, so when a surgeon says they are going to operate – and not with a view to extending your life, but to go in determined to cure you – it means everything - I owe them everything.”
Alastair, who is also clinical director of cancer alliance, said: “Caroline had extensive chemotherapy and surgical resection of multiple organs, which is physically demanding but also presents a significant psychological burden and carries the potential for serious complications.
“Nottingham has an advanced cancer service which is able to coordinate this care and support her through the process. However I must emphasise how important Caroline’s positive outlook and bravery has contributed to the successful outcome in her case.
“There were a lot of people involved in Caroline’s care, and how well they worked together is really important. It has been a pleasure to be part of the team to manage her from a life-threatening cancer diagnosis into her current state of remission and surveillance.
“The NHS is an amazing organisation and hearing some positive stories from someone who has had really positive experiences in many areas of the NHS is really great.”
Acting hospital chief executive Rupert Egginton said: “This is incredible to hear – it’s great for our staff to realise that small acts of kindness really make a difference. If we understand things from a patient’s perspective, that’s where we do our best work".
