Harrogate education consultant Barbara Hibbert has defied expectations by surviving five and a half years after a stage four bowel cancer diagnosis.
To mark Bowel Cancer Awareness Month in April, the 62-year-old spoke to Yorkshire Cancer Research about her quest to find curative treatment, her contribution to pioneering research and the uncertainty of living with cancer in the wake of COVID-19.
When actress Dame Julie Walters revealed in February 2020 that she’d been diagnosed with bowel cancer, the experience she spoke of felt very familiar to Barbara Hibbert.
Dame Julie had visited her doctor with stomach pain, heartburn and vomiting. She was shocked when she found out she had cancer.
“These were some of the same symptoms that I’d had back in 2014,” Barbara explained. “They’re not the most common symptoms of bowel cancer like unexplained weight loss. Looking back there were signs that I ignored and put down to getting older, being overweight or drinking too much. I didn’t want to be one of the ‘worried well’ clogging up the surgery.”
Since her diagnosis, Barbara’s life has been a rollercoaster of ups and downs. Although her cancer was discovered at a late stage and had already spread to her liver, she was able to have chemotherapy and surgery.
The treatment was successful. For a while, Barbara was ‘cancer free’, and life went back to normal. But then came the news she hoped she’d never hear.
In September 2016 – two years after her initial diagnosis – she found out the cancer had returned, and this time it had spread beyond her liver to her peritoneum, a thin layer of tissue that lines the abdomen.Barbara was told she’d have six months to a year to live if the cancer didn’t respond to treatment, and perhaps two years if it did respond.
She began a second course of chemotherapy, but with a terminal diagnosis looming over her, she began researching other treatment options, including pioneering surgery and personalised medicine.
She even sent a tissue sample to researchers in the US, but to her surprise, the chemotherapy started working. Her tumours started to shrink and she began to feel more hopeful.
Barbara said: “When I was told I was having palliative treatment I thought that was the end. My husband and I had our wills re-written, and I took a lump sum from my pension. I tried to get as much sorted out as possible so it would be easier for my family.
“My oncologist didn’t expect me to respond to the chemo. When it started working, I think I headed into a bit of denial. I felt so well.”
In fact, the chemotherapy continued to work for more than two years. Barbara’s treatment became less frequent, allowing her to spend more time working and with her family.
During this time, Barbara became involved in providing a patient perspective for bowel cancer research. She joined the UK Colorectal Cancer Intelligence Hub’s Patient-Public Group, which provides support to Yorkshire Cancer Research’s Bowel Cancer Improvement Programme.
“I became interested in helping researchers understand how things affect patients,” she said: “It didn’t matter if it was too late for me or not relevant to me directly. It became a way of paying something back for the treatment and care I’d received.
“Before my experience with cancer, I thought everyone got the same treatment across the country – then I found out they don’t even get the same treatment across Yorkshire. I wanted to contribute towards the ‘levelling up’ agenda to reduce inequalities and ensure everyone receives gold-standard treatment.”
By February 2019, Barbara’s chemotherapy was no longer keeping her cancer at bay. She was quickly put on a ‘second-line’ option, but that only worked for two rounds.
“The chemo lasted much longer than anyone expected,” Barbara said. “When it stopped working, I asked my oncologist about clinical trials and he said he’d like to put me on one, but he didn’t know of any suitable ones at that point. That’s when I decided to revisit all the research I’d done before to try to find something that might work.”
While searching online, Barbara came across a new clinical trial for a treatment called Pressurised IntraPeritoneal Aerosolised Chemotherapy (PIPAC), which is a type of chemotherapy given directly into a patient’s abdomen.
She said: “The trial had been put up on the website that afternoon. I emailed the surgeon leading the study - Jamie Murphy at Imperial College, London - and he told me to get a referral from my consultant, which I did. I saw him for the first time in March, and that’s when he told me he thought he could operate instead.”
Barbara had previously investigated the possibility of having a radical operation called cytoreductive surgery (CRS) with hyperthermic intraperitoneal chemotherapy (HIPEC), which aims to remove as much cancer as possible and then destroy any remaining cancer cells with hot chemotherapy.
At the time she’d been told her cancer had spread too far for the operation to be successful, but Mr Murphy was confident he could give her the life-extending surgery she needed.
“It’s a huge operation, and there were lots of pros and cons to consider. However, I really didn’t have a choice,” Barbara explained. “There was only one more drug available on the NHS and nobody thought it would work. I didn’t have a lot of options so I decided I’d better go for it.”
Barbara’s surgery took place in June and lasted more than 12 hours. It involved removing her ‘omentum’, a sheet of fatty tissue that stretches over the abdomen, her uterus, cervix, ovaries, peritoneum and part of her bowel and liver.
After just a month, she had recovered to the point where she was able to travel to Sheffield Hallam University to teach for half a day. She visited the Lake District in August, and by September she’d completed a five-mile charity walk with her surgical team. She also completed a solo trip to Australia in November to visit a friend.
Barbara puts her quick recovery down to exercising and eating healthily in the run up to and following her operation. Following her initial diagnosis, she made huge changes to her lifestyle, including drinking less, eating less red meat and completing 10,000 steps a day. After her surgery, she joined a cancer exercise programme funded by Yorkshire Cancer Research.
“I was told to expect to feel 70% of normal after three months, and I was determined to beat that,” Barbara said. “By September, I felt fine. Taking part in an exercise programme specifically aimed at people with cancer made a huge difference to my recovery. I did things I never would have done before, and I certainly would never have exercised in a group. But I was exercising with a group of people like me, not gym bunnies in lycra, so it was okay.”
Although Barbara’s first scan following surgery showed no signs of cancer, a more recent scan revealed a new 4cm tumour on her liver. She has been urgently referred to St James’s University Hospital, Leeds, but a decision about whether to carry out surgery to remove the tumour has been postponed for four to six weeks.
As always, Barbara is facing the setback with the same pragmatic approach she’s taken since first discovering her cancer.
Barbara said: “There are one or two other areas of concern and they’d like to re-scan in a few weeks’ time to see what’s happening. Coronavirus was the final decider, as it would be too great a risk along with major surgery. So, I’m back in a waiting situation. I’ve been told that ‘it is better wait and get the right treatment than rush and have the wrong treatment’.
“Things are very uncertain, especially with the added complication of the virus. I’m worried that surgery that isn’t lifesaving might be put on hold. But currently I feel well, and although I can’t go to my exercise classes anymore due to the pandemic, I still plan to complete 10,000 steps a day.
“There was a point when I didn’t think I’d see my granddaughter born, and now she’s three. I’m enjoying being on ‘granny duty’ and I feel extremely lucky to have had so much extra time.”
Sign up to receive our latest news and updates
From supporting people to make lifestyle choices that reduce their risk of developing cancer, encouraging more people to take part in national cancer screening programmes, to finding the best treatments from across the globe and bringing them to Yorkshire, the charity is having a direct impact on the lives of people living in Yorkshire.
But we need more people to join us, to help make sure that people in the region have the best possible support and treatment.
We'd love you to be part of it.