A businesswoman who was given 12 weeks to live by Bristol doctors after being diagnosed with pancreatic cancer in 2019 is hoping to set up a charity to help people recognise the symptoms of the deadly disease.
Bryony Thomas, an entrepreneur who runs her own business growth company, said she didn’t pray or instinctively feel she would beat the odds when she was told the news just days before Christmas three years ago - she accepted she would die. On hearing the devastating diagnosis, her first thought turned to her daughter, who was only eight at the time, and her husband. She had lost her own mother when she was just five.
“I was pretty accepting of the fact I was dying," she said. "I am not religious, I didn’t pray and I didn’t think I would be the exception or positivity would beat it; I accepted I would die,” she said.
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Only 7% of people who are given a diagnosis for the disease survive for five years or more. November is Pancreatic Cancer Awareness Month and Bryony, who was give the two-year clear in March this year, is hoping she will reach the five-year mark. "Hopefully we will get to that," she said.
Bryony is the founder of business growth consultancy Watertight Thinking, which she established in 2008, as well as the author of an award-winning book by the same name - and had six people whose livelihoods depended on her company when she became seriously ill. Rather than wind the business down, however, she focused on how she could help her employees.
“I didn’t want the house to look like a funeral parlour or for my daughter to be surrounded by flowers and cards, and so we set up a Just Giving page [to support the business],” she recalled.
She asked people who were going to spend £2.50 on a card, to donate the amount instead. Incredibly, she raised £17,000 in two weeks and used the money to keep her business afloat. “It was like having a memorial but while I was alive. Everyone was leaving messages about what my work had done and it was just incredible. Mind blowing.”
Being diagnosed with pancreatic cancer
Despite telling her doctor for four years before being diagnosed she had tiredness that wouldn’t go away, Bryony was told nothing was wrong with her. She had tests done for sleep apnoea and coeliac disease, but was always sent home. It was after carrying out a big speaking engagement in 2019, however, and discovering her urine was “fluorescent yellow”, she started to grow seriously concerned.
“I knew I was hydrated so I knew something was wrong. I went to the doctor and my wee looked like stewed tea. She sent me home saying it was a urinary tract infection.”
The next morning, Bryony woke up and thought she was “a bit yellow” so called 111 and went to an out-of-hours doctor who did more blood tests. By the following day she was “definitely yellow” so called 111 again and was admitted to Southmead Hospital in Bristol.
“By that time I looked like Marge Simpson. They carried out scans and on December 19 I was diagnosed, and was told I had about 12 weeks to live."
The tumour was on her portal vein, making surgery extremely difficult. "There is only one cure for pancreatic cancer and that is surgery - there is no other route - and only one in 10 people are eligible because of the location. Surgery is a real long shot and there are very few surgeons who do it.”
But on December 27, while spending time with family over the festive season, Bryony received a call from the doctors at Bristol Royal Infirmary to say there was a surgeon who was prepared to operate.
“I was thinking it would be the last Christmas I would have with my family," she recalled. "I don’t even know how my husband and I got through that Christmas. I wrote letters before I went into surgery because it is very dangerous and lasted 14 hours. I was very lucky that it was pre-Covid and in Bristol. It is really complex surgery - as complicated or more complicated than a heart transplant.”
Bryony went in for the ‘Whipple procedure’, which saw the bottom of her stomach removed, two-thirds of her pancreas, her gallbladder and the top part of her intestines, on January 2, 2020. She remained in hospital for two weeks and came out with open wounds that had to be packed. She also underwent eight intensive rounds of chemotherapy. She was due to have 12 but started having fits so the doctors stopped the treatment.
“It was the beginning of the pandemic so I was in a separate room from my husband and the only time I was allowed out of the house was to go to the nurse to get her wounds dressed,” she recalled. “It was a 20-minute walk and it took me an hour, but it was the only time I was allowed out so I would insist on walking.”
Bryony is now registered disabled. The treatment for the pancreatic cancer has left her unable to digest fat properly or absorb nutrients, and she can’t feel her hands or feet because the chemotherapy has killed the nerve endings in them.
In March last year, she was also given her first year clear of cancer. A total of 75% of people get a recurrence of pancreatic cancer in two years - and a recurrence with the disease is terminal.
“I burst into tears [when I found out I had the all clear] - it was on the phone because of Covid - and I had a cup of tea because I am British."
She was given her second year clear in March this year and will have her next annual scan in March 2023. Looking ahead, Bryony is hoping to set up charity to raise awareness of the lesser known symptoms of pancreatic cancer. She plans to call it 'Clue in the Loo'.
“One of the symptoms is floating poo. I reckon if you did a straw poll of 1,000 people and ask which of these symptoms you would go to the doctor for, you wouldn’t go for persistently having to flush the toilet. You would go if there was blood, if it was black, if you had diarrhoea or even ongoing constipation. But I certainly wasn’t ever asked. So I am going to get brave about talking about poo," she added.
The symptoms of pancreatic cancer
Pancreatic cancer is the tenth most common cancer, with 10,449 people diagnosed with the disease in the UK in 2018, according to Pancreatic Cancer UK. It is also the 5th biggest cancer killer in Britain, with 9,000 deaths every year.
The disease has the lowest survival of all common cancers, with five-year survival less than 7%. Five-year survival of pancreatic cancer in the UK lags behind the rest of the world, with the UK ranking 29 out of 33 countries with comparable data. Early diagnosis is crucial to improve survival outcomes for people with pancreatic cancer; with one-year survival in those diagnosed at an early stage six times higher than one-year survival in those diagnosed at stage four. However, most people with pancreatic cancer are diagnosed at a late stage.
So what are the symptoms to look out for? According to Pancreatic Cancer UK, common symptoms include:
- Indigestion
- Tummy pain or back pain
- Changes to your poo
- Weight loss
- Jaundice
- Losing your appetite
- Recently diagnosed diabetes
- Problems digesting your food
- Feeling or being sick
- Blood clots
- Feeling very tired (fatigue)
There are also some less common symptoms of pancreatic cancer. These include a fever, shivering, and generally feeling unwell or not quite right. Some people also feel like they can’t swallow their food properly. This may be because the cancer can make you feel full quickly when you eat. Depression and anxiety without any obvious cause may also be a symptom, according to Pancreatic Cancer UK.
November is pancreatic cancer awareness month. Research into pancreatic cancer has been underfunded for decades, receiving only 3% of the UK cancer research budget, meaning survival has barely changed in the past 40 years. Pancreatic Cancer UK is calling on people to take part this month in raising vital funds to help get pancreatic cancer noticed and fund research breakthroughs. To find out more, visit pancreaticcancer.org.uk.
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