A non-smoking mum who worked for the NHS for nearly 30 years is trying to fund her treatment for stage four lung cancer.
Caroline Roberts is desperate to raise at least £7,100 a month to fund private treatment so she can live for long enough to enjoy the 50th birthday trip she has been planning for a decade.
Enjoying robust health, the 49-year-old of Queniborough, Leicestershire, ate well, worked out three times a week and had never smoked so, when she developed a nasty cough in November 2018, she thought it was a simple winter bug.
A GP practice manager, when her symptoms persisted, she asked a colleague to refer her for a precautionary chest X-ray, only for a worrying mass to be found – triggering further investigations, which led to her shocking diagnosis in January 2019 of stage four lung cancer.
Now, she fears her 18 month fight for life will soon be over, unless she, her husband, Chris, 54, who quit his job as a prison officer to care for her, and their children, account executive Max, 25, and biomedical scientist Alice, 21, can raise £7,100 a month for private treatment – and any additional costs – as she has exhausted all her NHS options.
Thanking the generous strangers who have already donated more than £30,000 through her GoFundMe page, she continued: “I am so grateful to them for giving me hope.
“Since my diagnosis, I’ve spent every Christmas, every birthday and every anniversary wondering if it’d be my last.”
She continued: “On my 40th birthday in February 2011, my family and I went to Dubai. We decided when we were out there that we’d do it again for my 50th. I need to do everything I can to make sure I’m still here to see that through.
“I’ve been fighting for my life for 18 months now and to have whether I live or die come down to money is devastating. I can’t help but think, ‘Is that all my life is worth?’
“Neither I nor Chris have worked since my diagnosis so we don’t have any income. Every penny that people donate would mean the absolute world to us.”
Working for the NHS since she was 21 means healthcare has always been of paramount importance to Caroline, whose work involved supporting patients in a busy GP surgery, where pamphlets and posters listing symptoms of common life-threatening conditions adorned the walls.
“Part of my role was to promote health awareness, so I thought I knew exactly what was out there,” she said. “And, while non-smokers can get lung cancer, many of us can’t help but automatically connect it to smoking in our minds.
“Being a fit and healthy non-smoker, I never dreamed this would happen to me.”
Looking back, Caroline recalled how the persistent cough, which signalled the start of her decline, was joined just weeks later by another unusual symptom.
She said: “At the end of November 2018, my family and I went out to a Christmas market. While we were there, the flashing lights started to really hurt my eyes. I said to my husband Chris, ‘Something is wrong here.’
“I took myself home to rest, but by the morning, it was no better. I never took sick days, but I decided to work from home to give myself a chance to rest.”
The following morning, still feeling no better, Caroline spoke with her GP, who sent her to the eye casualty department of Leicester Royal Infirmary to be assessed. There, a scan revealed a mass behind her right eye.
Unsure exactly what it was, doctors referred her for further tests at the more specialised Royal Hallamshire Hospital in Sheffield, South Yorkshire.
“It was a bit of a wait for my appointment, so knowing that I would have so much on my mind, I decided to work from home until I’d been seen,” she explained.
“I went into the surgery to get all my things, and as I was doing so, I asked one of the GPs if they could refer me for an X Ray,” she added.
“On top of the eye pain, I still hadn’t shaken my cough and was getting sick of it.”
Tragically, the results of the X ray also revealed a mass, this time in Caroline’s right lung.
When she went to Sheffield for her next appointment, armed with the results of her chest scan, doctors began to fear something was seriously wrong and performed a full-body CT scan.
Just 24 hours later, they phoned Caroline with the heartbreaking news that she had incurable stage four lung cancer.
“My world was shattered,” she recalled. “My son Max was supposed to be coming over that day to celebrate a new job he’d got, and Alice, my daughter, was due home from university the following day.
“I just kept thinking, ‘How do I tell my children?’ At that point, I didn’t know if I had days, weeks, months or years left. One of the hardest parts of all this – even today – is not knowing what’s coming next.”
To get a more precise diagnosis, Caroline was booked in to see a lung specialist. But before her appointment came Christmas Day – an unthinkably emotional time for the Roberts family.
She recalled: “Christmas is supposed to be a happy time for all the family to get together, but none of us wanted to celebrate.
“We didn’t put a tree up, or any cards. It didn’t feel right. I had no idea if that was going to be my last Christmas.”
On 27 December, Caroline met with her lung specialist, who performed a biopsy and confirmed that she had non-small cell lung cancer – the most common form of the disease, according to the NHS – which had spread to her eye, shoulder, spine and lymph nodes.
She added: “I was told that I could have treatment, but that it was palliative, not curative. I’d gone from fit and healthy to terminally ill in a matter of weeks.”
In January 2019, Caroline began taking daily doses of a targeted therapy drug called Afatinib, which works by blocking the proteins responsible for cell growth and division from sending signals to the cancer to grow.
Just two months later, she was dealt another blow, when an MRI scan revealed nine lesions on her brain.
As the drug would be ineffective in treating them, she also needed a form of radiation treatment, where highly-focused beams precisely target very small areas of the brain without damaging healthy surrounding tissue.
But the good news following a scan in August, showing that the treatment had been successful, was short lived, as further tests in October revealed that she had become resistant to Afatinib – meaning she had to begin aggressive intravenous chemotherapy.
Alongside the chemotherapy, she also had immunotherapy – where the power of the immune system is used to fight cancer.
“I’d have to go into hospital and be hooked up to a drip, then have two bags of chemotherapy drugs and two of immunotherapy drugs pumped into my body,” she said.
“The side effects were horrendous. They were exactly what you think of when you think of cancer treatment – I lost my hair, I was nauseous, I was fatigued.”
After four rounds, Caroline stopped having chemotherapy in January 2020, but continued to have immunotherapy and, in March, a scan showed she was responding well to treatment, as none of her tumours had grown.
Continuing to receive immunotherapy every three weeks – right through the height of the Covid-19 pandemic – in June, another scan brought terrible news.
“Because of the coronavirus, there had been a slight delay in me having my scan,” she said. “It was only a few weeks – but in cancer time, that can be a lifetime.”
“I feel very lucky to have received treatment throughout the pandemic, as I’ve read about so many people that haven’t been able to,” she continued. “But every moment I have is precious and, sadly, by the time I had my scan in June, my original tumour on my right lung had doubled in size and a new one had grown.
“I also have tumours now on my hips and liver and too many lesions on my brain to count. Basically, my treatment had stopped working and the cancer has expanded its journey of destruction throughout my body, shortening my life.”
Caroline is now having four more rounds of chemotherapy, after which there are, tragically, no further options currently available to her on the NHS – meaning her only hope now is a drug called Osimertinib.
According to NICE guidelines, the treatment can be available on the NHS through the Cancer Drugs Fund – but only in cases where the patient has a specific mutation known as T790M.
To date, doctors have not been able to obtain a biopsy result accurate enough to confirm whether or not Caroline has the mutation.
“That’s the real sting in the tail,” she said. “If we could get a biopsy that proved I had the mutation, I might be able to get the drug tomorrow. But nobody can tell me if I do or not. I feel like I’ve been left on the shelf.”
“I know it isn’t personal and that rules are rules, but it’s such a cruel twist of fate,” she added. “The NHS doesn’t owe me anything, but I do wish they could cut me some slack, after I served them for almost 30 years.
“I don’t want to be a private patient, but what choice do I have?”
Now, Caroline – who, not wanting to know her life expectancy, has not asked doctors for an exact prognosis – and her loved ones must raise £7,100 to fund each 30-day course of Osimertinib and have launched a GoFundMe page, which aims to gather £75,000.
Due to meet with a specialist imminently to discuss her next steps, she hopes to be on the drug by the end of September.
Overwhelmed by the kindness of people – many of them strangers – who have donated over £30,000, so far, she said: “I’ve been in tears over the sheer generosity people have shown me. I’ve had donations from people I haven’t spoken to in decades and from complete strangers.
“It’s absolutely blown me away how amazing people can be. I’ll never be able to find the words to say thank you to those who’ve helped me prolong my life and stay with my family.”
A spokesperson for the National Institute for Health Care Excellence ( NICE) confirmed that osimertinib is available through the Cancer Drugs Fund as a recommended option for treating some lung cancers with the T790M mutation.
They continued: “Osimertinib does not meet NICE’s end of life criteria. The cost-effectiveness estimates are higher than NICE normally considers an acceptable use of NHS resources, so osimertinib is not recommended.
“Additionally, the treatment is not considered eligible for inclusion within the Cancer Drugs Fund as it does not have the potential to be cost-effective at the price offered.”