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Living with a terminal diagnosis

When Barbara Hibbert, from Harrogate, was diagnosed with terminal cancer, her oncologist asked her if she had a ‘bucket list’ of things she wanted to accomplish before she died.
 
“No,” she replied. “I quite like the life I have.”
 
With a happy marriage, a granddaughter on the way and a successful teaching career, there was nothing Barbara felt she’d missed out on.
 
Instead of jumping out of a plane or booking a round-the-world trip, Barbara, who has a PhD in education, used her research skills to find out as much as she could about her disease and treatment options.
 
“Doing my own research made me feel in control of what was happening to me,” she explains. “There’s an awful lot of rubbish out there, and I understand why some people believe that ‘Big Pharma’ is withholding a cure. I know they’re not, but I’m someone who wants information and wants to know what might happen.”
 

 
Barbara, 59, was diagnosed with stage 4 bowel cancer in September 2014. She first realised something was wrong when she went to give blood and found out she was severely anaemic.
 
Looking back, she’d experienced many symptoms in the years before her diagnosis, including dark coloured stools caused by bleeding of the tumour. Other symptoms caused by the anaemia included thinning hair, shortness of breath and mouth ulcers.
 
She says, “I was so foolish that I had symptoms that I ignored, but I didn’t recognise them as symptoms. I put them down to getting older, being overweight or drinking too much. If I’d been diagnosed earlier it would be a very different picture. So I’m interested in early diagnosis and making sure people recognise the signs of cancer. It’s important to note that not all the signs might be present. I never lost weight, so I thought there couldn’t be anything seriously wrong with me.”
 
Barbara’s cancer had already spread from her bowel to her liver, but she underwent chemotherapy and surgery and by the summer of 2015 she had been declared ‘disease free’.
 
“They told me that there was a 50% chance the cancer would return, and that if it did, they could deal with it. So we were shocked when, in September 2016, I was told that the cancer had come back and I was terminal.”
 
Barbara was getting ready to go to Paris for work when she found out doctors had not only discovered a tumour in her liver, but that it had also spread to her peritoneum, a thin layer of tissue that lines the abdomen.
 
She explains, “It was surreal at first. I just carried on. I went to Paris the next day. I remember standing in the Gare du Nord and wondering if I would ever be there again.
 
“I became very busy after that. I’m not saying I wasn’t distressed, but there was an awful lot to get on with. 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.
 
“We decided to be upfront with everyone. I had to tell people. Things like telling our two daughters are now a blur.”
 

 
Barbara was told that she would have six months to a year to live if she didn’t respond to treatment, and perhaps two years if she did respond.
 
She began a course of chemotherapy at the Sir Robert Ogden Macmillan Centre in Harrogate, involving an infusion every fortnight followed by nine days of pills, taken twice a day. Barbara is now on her 19th cycle of treatment, and will continue with this treatment until it stops working.
 
“When I was told I was having palliative treatment I thought that was the end. I thought it meant ‘end of life’. But I’m not in end of life care by any means yet. They can’t cure the cancer, but they can manage the symptoms. Scans have shown that the tumours are shrinking.”
 
While researching treatment options, Barbara discovered a radical operation – cytoreductive surgery (CRS) with hyperthermic intraperitoneal chemotherapy (HIPEC) – that involves chemotherapy being administered directly into the stomach and heated up. It is carried out in just two hospitals in the UK. She was referred for the treatment at The Christie, Manchester, by her GP, but was left devastated when consultants said that her cancer was inoperable due to its extensive spread in the peritoneum.
 
“That was probably my lowest point. Now that my tumours have shrunk, it’s possible that I could join a clinical trial, but at the moment I’ve decided to hang on until things stop working and then think again,” Barbara says.
 
“I’ve been investigating organisations that scan tumours for hundreds of mutations and then match those mutations to available treatments. I also sent a tissue sample to a clinical trial in the US but recently found out that I’m not eligible.
 
“You can stick with standard care which has been trialled and peer reviewed, but when you know that things are changing rapidly and you’re going to be dead before new treatments have been peer reviewed then a promising lead is enough.”
 
Following her initial diagnosis with cancer, Barbara made huge changes to her lifestyle. She began drinking less, eating less red meat and exercising regularly. She is still completing 10,000 steps a day, and is keen to follow any credible dietary advice she comes across, including eating nuts and taking vitamin D.
 
Before every chemotherapy cycle, Barbara undertakes a 48 hour fast in order to avoid the nausea usually caused by the treatment. There’s no evidence that it has made a difference, but Barbara has continued to feel well, and has only suffered from a few side effects such as losing her fingerprints.
 
“My oncologist is extremely surprised that I’m doing so well. He didn’t expect me to respond to chemo, which I obviously have done. It’s difficult to plan for more than six weeks at a time. I have a scan every 12 weeks, and you get very anxious. ‘Scanxiety’, they call it.
 
“My aim, when I first received the news I was terminal, was to see my granddaughter born. Now my ambition is to last until she’s about three and then she will have a chance of a memory. I was also lucky enough to get tickets for Harry Potter and the Cursed Child in the latest ballot release. They are for next August and I would like to still be here to see that.
 
“I guess I am heading into a bit of denial. I find it difficult to think about death because I’m feeling well. But deep down I know I’m not going to be okay.”
 

Barbara has been able to enjoy a few holidays with her family, including trips to Florence and Lake Como in Italy, Wales and Dorset. She has continued to work two to three days a month as a history education consultant, and she’s also become involved in research organisations such as the Yorkshire Cancer Patient Forum, the Yorkshire Cancer Alliance and the Leeds Institute for Data Analytics.
 
Barbara says, “I want to do as much as I can to help. My professional skills include reading information, understanding it and giving my opinions, and that’s what I want to offer. I actively want to work and keep busy, because otherwise what do you do? Sit on the sofa and watch Judge Rinder and feel sorry for yourself? My attitude is that today I’m alright, so therefore I will enjoy today.”
 
She adds, “My life could have been a lot worse. My daughters are fairly set up in life and I’ve enjoyed my career. I think I’ve done a lot of good on the way. Quite a few of my students are still in touch with me and many have gone on to do interesting things.
 
“A few years ago a consultant said that cancer is a good way to die, and it caused an outcry. What he meant was that it gives you time to put your affairs in order and see people and lay down memories. Everything I’ve got now is on borrowed time. I’ve had three years of being more appreciative of life.”

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