Bryony Thomas was 41 when she was diagnosed with pancreatic cancer, and was told she probably had weeks to live. In this week’s Real Voices, she describes her journey so far, and the lesser-known ways that a disease like this can be caught earlier.

I was diagnosed with pancreatic cancer on 19 December 2019, having been admitted as an emergency case to the unit at Southmead Hospital in Bristol. I’d had a couple of weeks with no appetite and then developed severe jaundice. On that day I asked what my prognosis was, and I was told I probably had around 12 weeks left to live. The tumour was wrapping around my portal vein, and I was told it probably wouldn’t be eligible for operation. But we found a surgeon at the Bristol Royal Infirmary, and I had a 14-hour Whipple operation in January 2020, which is an incredibly complex surgery. I then had six months of chemotherapy, and I’m now thankfully three years clear.

The surgery involved the removal of the bottom of my stomach and quite a lot of my digestive system, so I take around 75 tablets a day to retain near-normal digestive function. Chemo killed the nerve endings in my hands and feet, and I also suffer from fatigue. It’s very hard to adjust to life with these different ability levels. Oddly enough, the pandemic actually provided an opportunity for me to get back into work a lot sooner than I thought. I do a lot of public speaking in my line of work, and during my recovery I didn’t expect to ever be able to go back to doing that, as I can’t stand up for longer than 10 minutes. However, with so many conferences and events moving online during Covid, this meant I was able to do virtual public speaking.

I think I still grieve for the person I used to be. It’s as if my brain hasn’t yet caught up with what’s happened to my body. There is a vast chasm between what I think I can do physically and what I can actually do. I have to remind myself to be happy with what I have.

I don’t think many people are aware of the signs of pancreatic cancer to look out for. The main one is floating poo. If your poo is floating regularly and has a peanut-butter or lighter colour, and perhaps won’t go down without more than one flush, that’s a sign that there’s fat in it, which can be an early sign of pancreatic cancer. I don’t think many people would go to the doctor about floating poo, but if this is occuring consistently you must see your GP. However, the difficulties don’t stop once you’re at a doctor’s appointment. Doctors tend to ask patients “if their bowel habits have changed”. This is a very opaque and confusing way to phrase the question, considering most people wouldn’t know what healthy poo looks like, and how to spot abnormalities. Doctors don’t ask the necessary precise questions about the colour, smell, quantity or texture. This is because of embarrassment and stigma, which absolutely should not have any place in a doctor’s office.

Pancreatic cancer doesn’t get a lot of attention compared with other cancers, and I think that’s for a rather perverse reason. Dead people have very quiet voices. Breast cancer leaves lots of survivors, which is obviously brilliant, but survival breeds survival. As there are so many survivors of breast cancer, they all talk about it and spread awareness of the signs and fundraise. The tricky thing about pancreatic cancer patients is that we tend to die, and mostly quite soon after diagnosis. That means there are fewer people to fundraise and spread awareness, which leads to a lack of knowledge around the signs of pancreatic cancer, which leads to later diagnoses, which results in more deaths. The least survivable cancers become so because they’re the least fundraised for and researched. 32 people die of breast cancer every day in the UK, but 26 people die from pancreatic cancer. We don’t get our fair share of a voice. The media prefer to talk to people with personal lived experience of the disease, but most of us with pancreatic cancer die, so you hear about it a lot less than you hear about breast cancer. Interviewing a family member or doctor of the person who has died just isn’t as interesting for the media as hearing from a survivor themselves.

I’ve campaigned a lot with Pancreatic Cancer UK, and my plan is eventually to set up a seperate charity called Clue in the Loo. I want to run an education campaign so that people know what healthy poo looks like and how to spot abnormalities. I also want to help people talk about poo more comfortably and openly, because the stigma and embarrassment around the subject is killing people. I went to my doctor with symptoms for five years, and if I’d been asked more straightforward and unambiguous questions, I would have been diagnosed a lot sooner. It’s ridiculous. It isn’t rocket science, all it takes is looking in the toilet and having open conversations with your doctor.