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Pancreatic cancer patient emphasises swift diagnosis and treatment

As stark warnings are made about the number of people living in the UK with undiagnosed cancers makes headlines, we spoke to Bryony Thomas about her pancreatic cancer diagnosis – one of the least survived and fastest progressing cancers.

For five years, Bryony Thomas, 41, had been plagued by fatigue and she felt like a part of her was screaming. She had always known something was wrong. In December 2019, she had friends round and her husband, Tom, made a lasagne of which Bryony had a decent size portion. The following morning, she woke up feeling nauseous and felt as if nothing had shifted from her stomach.

A few days later, she had a smaller appetite and noticed her urine was very bright yellow and soon darkened the next day. “It looked like tea with no milk,” she says. Bryony awoke to discover her eyes and skin had turned yellow. She called 111 and was admitted to hospital.

Bryony with her husband, Tom, in hospital

Her symptoms began to get progressively worse. Her jaundice continued, and her stools became white. Despite all this she was in no pain.

Four days into her hospital admission, and after a series of scans, she was diagnosed with pancreatic cancer (adenocarcinoma) – the least survived common cancer. Only one in four people in England live for a month after a diagnosis, according to Pancreatic Cancer UK.

The survival rate for this type of cancer has remained stagnant for more than 50 years with 93% of people dying within five years.

Bryony recalls how her “heart sank” as she received the news when her husband, doctor and a nurse in a purple uniform entered the hospital room.

“I knew something was wrong. It all made sense. The night on my own in hospital after my diagnosis was agony.

“I sobbed inconsolably, and screamed, and read everything I could find.

“I feel sorry for anyone in the rooms around me, I don’t think anyone on the ward got much sleep listening to me.

“Having looked at the stats, I quite quickly started to reconcile myself to being in my final months. My thoughts were very much with my daughter.”

At the age of five Bryony lost her own mother following mental health breakdown. So, she understood all to well how life altering losing a parent would be and what it would mean for her husband to become a single parent.  

“Telling our daughter was probably the hardest single moment.”  

Bryony with her daughter

Bryony was fortunately diagnosed before Covid-19 cases erupted in the UK, putting a heavy burden on the NHS. She was able to be seen quickly without any restrictions and diagnosed within four days.

Only one in ten pancreatic cancer patients are considered for potentially curative surgery. Bryony’s cancer was deemed as “maybe” possible. That Christmas, in 2019, her daughter mastered bike riding and Bryony thought it would be the last milestone she would see, remembering it as “bittersweet” moment.

For pancreatic cancer, time really is of the essence as symptoms are often only present in the final stages.

So, when the phone rang two days after Christmas telling her the operation would be the following week, just 14 days after her diagnosis, Bryony nearly dropped the phone.

“This is the gold standard for pancreatic cancer. Days matter.”

However, there is a risk that a surgery is abandoned at the operating table. This could be for two reasons: the involvement of the portal vein or superior mesenteric artery, or if the cancer has spread to other organs.

During Pancreatic Cancer Awareness Month the importance of time – getting a quick diagnosis and treatment – is being highlighted as services for this disease are facing months of delays.

People who have begun to experience symptoms of pancreatic cancer face an unprecedented battle. Urgent GP referrals are down by 70% in Scotland and it is feared to be similar in England. Disruptions caused by the Covid-19 pandemic could mean up to 500,000 people are living with an undiagnosed cancer.

Macmillan Cancer Support says cancer risks becoming “the forgotten C” and the UK now faces a “ticking time bomb.”

However, these figures could double by next year if authorities fail to get vital services such as check-ups, screening, and referrals – that have been cancelled because of the pandemic back-up and running.

It is feared that it could take up to 18 months to identify the individuals who have developed cancer since the outbreak of Covid-19.

There have also been concerns raised that some patients are not attending appointments and treatment for fear of contracting the virus.

Bryony, who now campaigns for Pancreatic Cancer UK, was horrified when she learnt this news and has since featured in the charity’s #notimetowait campaign.

Urging people who have recently been diagnosed with cancer, she says: “Push for the care you need. Do not accept delays – make yourself a complete pain in the posterior.

“Speed saves lives. There is no time to wait with this disease.”

Reflecting back on her own experience, she realises the importance of heeding these exact words, adding, “I won’t be in those horrific statistics.” . Bryony understands the importance of time and how it can mean life or death.

Bryony began chemotherapy at the end of February 2020 but by the time lockdown and shielding kicked in, her immune system was seriously compromised. It was at that point coronavirus began causing problems, making an already daunting and scary time worse as she slept in a different room to her husband and maintained a two meters distance from her husband and daughter. “It was probably the time in my life when I’ve most needed a hug, and could not have one,” she says.

Bryony outside with her husband and daughter

Bryony could only leave the house for blood tests and chemotherapy sessions.

“I remember really savouring a walk to the doctors one time. I literally stopped and smelled every rose.”

Like many, Bryony’s oncology appointments were moved to mobile phone. But this was not easy and she has found it uncomfortable.

“It’s not easy to talk about your bowel movements and nausea to a faceless stranger on the phone.”

Bryony no longer needs to shield as she has completed treatment and her immune system has returned to normal. While, no longer the need to lock herself away, she is able to count the number of people she has interacted with on her fingers since her diagnosis.

“I feel like I’m becoming a bit of a recluse. It will be weird to get out there again.”

Facing another lockdown, and looking back on what she experienced during the Spring, Bryony suggests terminal patients break the rules. Despite, knowing this is controversial, Bryony said:

“If you’ve been given a terminal diagnosis, I think you should be given an exemption from the restrictions – see your family, hug them, have the conversations you need to have.

“If I were dying and was told I couldn’t see my sister, I would challenge them to arrest me for it.”

For those diagnosed with cancer, the treatment of chemotherapy can cause unpleasant side effects and can leave people with life-long aftereffects. Chemotherapy has left Bryony with permanent neuropathy, meaning she cannot feel her hands and feet, forcing her to walk with a stick.

Bryony’s digestive system has also been permanently altered with majority of her pancreas being removed, meaning she is no longer able to break down fats and proteins. She now has to take Pancreatic Enzyme Replacement Treatment tablets with meals to do this job – taking 50 tablets on an average day.  

Bryony holding a handful of her Pancreatic Enzyme Replacement Treatment tablets

Ten months post-surgery and Bryony has enough energy to do about 90-minutes per day of work.

“I will never go back to ‘normal’. Beyond these physical impacts, the mental load is pretty immense.

“I feel like I’ve done another degree since diagnosis. I’ve learned all about the function of my gallbladder, duodenum, pancreas – all of which I’ve lost.”

Yet, Bryony has managed to publish the second edition of her book, Watertight Marketing, which was nearly finished before her illness, during lockdown. It was released on her birthday, which she did not believe she would see.

Bryony is known as ‘The Bucket Lady’ at work

She has learnt not everyone is so supportive and the disease hit her professional life the hardest. Bryony is the founder of her own consultancy business, Watertight Marketing, and at the time of her diagnosis was about to launch a software product.

It was at that moment she experienced the “founder risk” – her investors backed out shortly after they learnt she had been diagnosed with cancer.

She had invested £200,000 of her own money and years of her time into the project. Bryony was forced to let her team go and was unable to work while receiving treatment.

“I felt cheated. I felt deeply sad that all that effort would be wasted. I felt awful for not being able to put that money back into the family pot.

“Now I’m through treatment, I’m starting to rebuild the business in a new model.

“But, I’ll always grieve for what nearly was.”

There is an 80% chance of Byrony’s cancer returning. Despite her improvement, Bryony is prepared for the worst-case scenario.

“I’ve written them [her husband and daughter] both letters about finding love again. I would want nothing more than for my husband to find someone to spend his life with, and for them both to know that loving that person as part of their family in now way diminishes their love for me.

“That’s the thing about love, it’s not finite…

“It just expands to accept the new people in your life.”

1 COMMENTS

  1. An excellent piece of work Lily.
    My friend died of pancreatic cancer after months of fighting it. I wish Bryony all the luck in the world. xx

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