A heartbroken mom has paid tribute to her daughter, who became one of the youngest people ever to die from bowel cancer in the UK just months after turning 18.
A year ago, Charlotte Simpson was starting her second A level year and enjoying a close family life with her parents, Sarah and David, and brother Elliott.
When she complained of an extreme stomachache in October, no one dreamed it would turn out to be stage four bowel cancer which four months later claimed her life.
Dying peacefully at home surrounded by her family, Charlotte was one of just three 15 to 19 year olds to be diagnosed annually with the disease, according to the charity Bowel Cancer UK.
“I couldn't believe someone so young could be diagnosed with a disease you associate with older people.Doctors ran tests to see if it was genetic, but they came back negative and they told us it wasn't hormonal," Sarah said.
“It felt like it was just rotten luck, but Charlotte's whole attitude from the start was amazing. She said, 'It's going to be ok – when can i start treatment?' All she wanted to know was if she could still have babies."
“It was an absolute nightmare. Every day I would think, 'This can't be real,'" she said.
Looking back a year to September 2019, Sarah remembers it as a particularly lovely time for her daughter.
“Charlotte was such a happy young woman," she said. “She was very much in love with Scott as she entered her second year of college – taking health and social care studies, English literature and English language."
“The oldest of seven cousins, she loved playing the mummy role and planned to become a teacher. We had the most fantastic relationship, being more like best friends than mom and daughter," she said.
“We loved going out for nice meals or watching girly trash telly at home, like Made in Chelsea or The Vampire Diaries."
All that changed last October, when Charlotte started suffering with extreme stomach ache and nausea.
As Sarah has celiac disease she suspected her daughter had it, too, and suggested she saw the doctor.
Given a routine blood test, the results revealed that Charlotte was anaemic, so she was prescribed iron tablets.
“They made no difference whatsoever. Instead, she slowly got worse and worse. Charlotte was losing weight and, super slim in the first place, she was exhausted all the time. When she came home from college she went straight to bed," Sarah continued.
After several more visits, by mid-December, Sarah complained to the GP, as she was so worried.
“They told us it would be extremely rare for it to be anything serious – one GP said if she was 50 or 60 they'd be worried, but she wasn't. But when she started being sick after every meal I knew enough was enough," she said.
“By the time we visited the doctor in December there was blood in her stools and they started to take it more seriously."
Sick throughout the Christmas period, Charlotte was in so much pain she was taken to Portsmouth's Queen Alexandra Hospital twice, with doctors suggesting both times she was suffering from Crohn's disease or a bowel infection.
Referred for a colonoscopy at the same hospital on January 16 the real nightmare began.
“They weren't able to perform the procedure," said Sarah. “They told us there was a blockage. I knew from the look on their faces that the news wasn't going to be good, as they went ghostly white."
“They sat us down and said there was a very high chance Charlotte had cancer, to which she replied, 'Don't be silly, I'm only 17. I'm not going to have cancer'."
Given MRI and CT scans that evening, just five days later the family returned to see the specialist, who confirmed that Charlotte had stage four bowel cancer, which had spread to her stomach and lymph nodes.
“My world fell apart," said Sarah. “It was like an out of body experience – it's felt like that ever since. I can still see Charlotte's face. She went bright red. She knew then it was serious."
Diagnosed just two weeks before her 18th birthday, on February 4, Charlotte celebrated the landmark before beginning treatment.
First she enjoyed a family dinner at The Ivy restaurant before being thrown a surprise slumber party by six of her nearest and dearest friends.
“Everybody went above and beyond for her," Sarah recalled. “We had a posh meal – just us four – and afterwards, her best friends surprised her with a pajama party."
“They all had matching pajamas and there were lots of balloons. Charlotte had a mountain of gifts, too, but, sadly, she never got to enjoy them."
The very next day, on February 5, she began a combination of chemotherapy and immunotherapy.
Going to Southampton General Hospital once every two weeks for the therapies, as well as having two days of treatment at home using a chemotherapy pump, her health quickly deteriorated.
“Charlotte told her friends she was going to beat the cancer – she was really positive and brave," Sarah said.
“She described the chemotherapy as a 'hangover without the partying,' and said she felt like spaghetti all the time, she was so weak and her body was so floppy. But by mid-March, she was in absolute agony, completely bloated and unable to keep any food down. "
With a scan that month revealing the tumor in her stomach had spread, causing a blockage in her intestine, Charlotte had a colostomy performed at the same hospital.
“The idea of it really stressed her out, but on the morning of surgery she said, 'If this is going to make me feel better it's worth it.' Bless her, she was only 18, but such a lioness," Sarah continued.
In hospital for the next 10 days, sadly, Sarah said Charlotte never recovered.
“I was by her side 24/7 from then on," she explained. “I did everything for her, including changing the stoma bag – she couldn't look at it."
“She was wasting away before my eyes. She was skin and bone," she said.
By the beginning of April it was clear things were going seriously wrong.
“Charlotte had started sicking up volumes of black liquid. I remember after it happened she looked at me and we knew it was bad," she said.
"I knew the cancer had spread."
Returning to hospital for a CT scan at the end of April, it was Sarah who broke the devastating results to Charlotte.
“After the CT scan, she asked the consultant to give the news to us," she said.
“She wanted her mum and dad to tell her the results. They told us the cancer had spread extensively and there was nothing they could do. Her body hadn't responded to the chemo at all."
“David asked, 'What are we looking at here?' We expecting them to say months or more, instead they said weeks. All they could provide now was pain relief. I didn't want to hear it. Every single time we got news it was worse than before."
“It was three months of pure hell that never stopped. We walked back in and I looked at Dave, not knowing what to say," she said.
“Charlotte looked at me and said, 'I'm going to die aren't I?' I replied, 'They just can't do anything, love.'"
For the next two weeks, Charlotte was “pumped full of painkillers," with Sarah by her side day and night.
But, with the pandemic unfolding, she was not able to seen any other friends or family.
So, at the beginning of May, her parents decided she should spend her last days at home.
“We didn't want her to be in the hospital," Sarah explained. “We wanted her to see family, friends and her beloved Cockapoo dog, Chester."
Setting up a bedroom in the ground floor back room, Charlotte was able to overlook the garden, where friends and members of her extended family gathered to say goodbye.
“The first thing she wanted to do was send cupcakes to all the nurses on the ward," said Sarah. “That sums her up totally – just so selfless. We didn't talk about dying and she only got upset about Elliott."
“She loved him so much and wanted to make sure I wouldn't let anything like this happen to him. Then she told me I had to let Dad get me a puppy, as I'd need a baby to look after when she was gone. Scott was her absolute rock and never left her side.'"
After two weeks at home, Charlotte passed away.
“We'd had beautiful sunshine for the past few weeks and suddenly the weather changed," Sarah said. “It was gloomy, wet and windy. The nurses came and said it wouldn't be long."
“We would always say, 'Love you. Love you more. Love you most,' and that's the last thing I said to her. Five hours later, at 10.50am, she went."
“She knew we were with her and, in a way, there was a sense of relief that she was no longer suffering," she said.
“But at the same time, we couldn't process it. Just four months after being told she had the cancer, she was gone. How could it happen to someone so healthy and young?"
“I always thought age was on our side, but it wasn't. Doctors told us that the fact her cells with still so young meant the cancer could divide quicker."
Laying their daughter to rest on June 11, Sarah says every day is now a struggle.
“It wasn't the funeral we'd wanted because of restrictions on large gatherings due to Covid-19, but it was still very special," she continued.
“I always thought we'd have her cremated, but when I came to it I couldn't bear not having somewhere to visit her. Every time I visit her grave, there are more and more flowers and I know she'd be happy to be there."
“Part of me died with Charlotte the day we lost her – the whole family is broken. I don't know how to keep going and dread waking up in the morning," she said.
“It's changed who I am and I'm now petrified of something like this happening to Elliott."
Seeing other students beginning their degrees this month has been another painful reminder that Charlotte should have been starting at the University of Winchester, where she had planned to study primary teaching.
But, despite her heartbreak, Sarah is determined to fulfill her daughter's one last wish, to raise awareness of teenage bowel cancer.
“I want everyone to know how loved she was and for people to realize that this disease, while rare, can strike in young people, too," she said.
“Charlotte made everybody she knew feel special, she was so lovely and kind, and I don't want to see other families grieving like us."
Generally seen as an older person's cancer, Genevieve Edwards, Chief Executive at Bowel Cancer UK, confirmed that Charlotte was one of the youngest people she had ever known to have died from the disease.
“We have seen a rise in bowel cancer cases in under 50s in recent years, which is incredibly concerning, and more research is needed to help us fully understand the reasons behind this increasing trend," she said.
“Charlotte's heart breaking and untimely death highlights the fact that bowel cancer, a disease usually associated with the over 50s, can – and does – affect younger people too."
“Only 17 when she was told she had bowel cancer, she is one of the youngest people we known to have tragically lost their life to the disease, just months after turning 18," Edwards continued.
“More than 2,500 patients under the age of 50 are diagnosed with bowel cancer every year in the UK, and it's thankfully incredibly rare in teenagers, with only a very small number of these in 15-19 year olds."
“Charlotte's diagnosis remains devastating for her family and friends and we're really grateful to them for sharing her story and helping to raise awareness of this deadly disease."
For more information see bowelcanceruk.org.uk
