19 year old Bronte Doyne begged doctors to take her seriously in a series of desperate messages written shortly before she died of a rare cancer that doctors told her she didn’t have and should stop googling about. A frustrated Bronte said she was ‘fed up of trusting’ medics who refused to accept she was dying. She eventually died in March 2013, 16 months after she developed fibrolamellar hepatocellular carcinoma, a rare form of liver cancer which only affects 200 people a year worldwide.
Full report From UK Daily Mail
The teenager had an operation in September 2011 to remove the cancer and was told she would make a full recovery, but online research in America told her that FBC often returns.
But ‘aloof and evasive’ doctors at Nottingham University Hospitals NHS Trust (NUH) treated her with ‘woeful lack of care and empathy’ and refused to accept this and told her to ‘stop Googling’.
In a text weeks before she died she said: ‘Need answers. Want to know what’s going on. Something’s not right. I’m sick of this’.
And days before she died she wrote: ‘Can’t begin to tell you how it feels to have to tell an oncologist they are wrong. I had to, I’m fed up of trusting them’.
Today Bronte’s mother Lorraine Doyne (pictured right) has made the messages public to reveal her daughter’s plight.
She said: ‘Bronte was denied pain relief, referrals were hugely delayed and efforts by her family to gather information and understand Bronte’s prognosis were handled in an evasive and aloof manner
HHer fears that her symptoms over the preceding months before she died were cancer-related were proved right.
‘The messages from Bronte are all her own words and I believe that’s more powerful for people to understand what she went through.
She added: ‘I want to see changes and action now.’
She and her daughter were forced to do their own research online, but doctors dismissed their fears.
Mrs Doyne said: ‘We had no information forthcoming and the only sources we found were through our own research.
‘We found a website for the Fibrolamellar Cancer Foundation, which is based in the United States, and it included an international forum.
‘It’s not just some pathetic website on Google, it’s been endorsed by the White House in publications, and was the only contact we had to get some awareness about this disease. But that information was dismissed here. I told the clinician that I knew what was happening to my daughter and something needed to be done but I was just told to “stop Googling”.
Bronte was first admitted to hospital in September 2011 with suspected appendicitis, and was told she had fibrolamellar hepatocellular carcinoma shortly after turning 18.
Over a 16-month period, she was told by doctors that she would survive the disease and had nothing to worry about after having an operation to remove a section of her liver in December.
But Bronte and her family knew through their own online research that there was a high chance the cancer would return and eventually claim her life, which it did on March 23, 2013.
The NHS trust who treated her has now promised to embrace the ‘internet age’ – and accept patients use the internet to research their illnesses – and admitted: ‘We did not listen with sufficient attention’.
Bronte’s tweets, text messages and personal diary entries reveal her fears about death because doctors were not taking her condition seriously.
These were all passed to the hospital as part of a complaint after her death.
In a diary entry less than a month before her death : ‘Mum tried to talk to my consultant but he didn’t give her much help. She even had to ask him when I was going to get my appointment for the oncologist. Really don’t think he likes my mum asking questions.’
She also wrote she was advised by her GP to go to hospital as an emergency case when her symptoms worsened about six weeks before her death, but was told she could not been seen.
She wrote: ‘I got so angry because the doctor was so rude and just shrugged his shoulders.
‘He gave me a sarcastic comment like you can sleep here if you want but they won’t do anything. So I just have to wait for another hospital appointment.’
In a tweet before her death she also warned: ‘My body does not feel very good #helpme.’
After she was diagnosed, Bronte wrote in her diary: ‘I have cancer. I’m scared. Mum rang keyworker. Need to know what this is. He doesn’t know much. Help me.’
She underwent liver resection surgery in December 2011.
Seven months later, after doctors had told her she was fine, she tweeted: ‘My body does not feel very good #helpme.’
Then, in November 2012, Bronte wrote in her diary: ‘Feeling sick for months now. Tired of this feeling c***. Hospital not worried so trying to get on with it.’
The teenager texted friends saying that doctors referred to how she ‘had’ cancer in the past and advised her not to relate symptoms to the disease.
Her fears about feeling like ‘something’s not right’ were ignored, as she said a doctor claimed her weight loss was a result of her being ‘part of a skinny family’.
Bronte was eventually referred to the Hogarth Ward, a Teenage Cancer Trust unit, where she stayed for 10 days before she died – after 16 months of being told she would be fine.
Source: UK Daily Mail
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