Jean called Tenovus Cancer Care’s Support Line when she was at her lowest after being diagnosed with bowel cancer. That was seven years ago. Now a valued member of their All-Wales Cancer Community, Jean hopes sharing her story will inform, inspire, and give hope to others walking in her footsteps.
When Jean, 72, had surgery for bowel cancer she named her “stomas” after lead characters from the hit 70s sitcom M*A*S*H.
Humorously calling them “Hot Lips and Frank” was Jean’s way of coping with the physical changes to her body and the new “openings” in her stomach where her bowel had been diverted. It also helped her young granddaughters come to terms with granny’s diagnosis, which was important for Jean.
“I was a big M*A*S*H fan back in the day”, chuckles Jean, married to Mick, and from Barry in the Vale of Glamorgan.
“My youngest granddaughters got to know Major Margaret “Hot Lips” Houlihan, and Major Frank Burns well – it helped them understand their function and want to help. They even helped me change my bags attached to the stomas – there’s never been any embarrassment around it and that’s the way it should be.”
Jean joined Tenovus Cancer Care’s All-Wales Cancer Community last summer to “educate, campaign and give hope”. Her inspiration was Dame Deborah James – aka Bowel Babe – who passed away from bowel cancer last June a national treasure after raising national awareness of the disease.
“What “Bowel Babe” did was inspiring, says Jean. Her impact was huge, in breaking down the stigmas around bowel cancer. We can all have a laugh about a burp or a fart, but when it comes to bodily fluids, like poo, it’s still a bit taboo isn’t it? That needs to change.”
Jean believes that only the experiences of real people affected by cancer has the power to raise awareness of all cancers to the greatest number of people.
“I see cancer campaigns that are just not reaching people. You reach people “through people” because that’s touchable and real. You can put all the leaflets you like in GP surgeries but do people look at them? I don’t think so. You need to hear from people who have experienced cancer themselves, or their families, and that’s when it makes a difference.”
Jean was diagnosed with bowel cancer in 2016 after a colonoscopy – a test using a small camera to check for lumps and changes inside the bowel. She says her only symptom at that time was an uncomfortable feeling in her rectum, which she’d only had occasionally.
“When I first went to the GP, she examined my stomach and said – no – there’s nothing there, and she couldn’t feel anything. That was it. Then I started to feel discomfort going to the toilet too, so I saw another GP, and this time I mentioned my dad had bowel cancer at the same age I was.
I also mentioned that two earlier bowel cancer screening tests had come back clear in the past year – the latest one being six months previously. That GP, I think because of my dad’s history, arranged a colonoscopy where a lump was found in my rectum, and everything moved quickly from that point.”
Jean’s results had taken three weeks to come back. She wasn’t prepared for the life-changing verdict when it arrived:
“I was diagnosed with bowel cancer just as my fourth granddaughter was being born in 2016. I screamed. I remember going home, and just screaming, I was hysterical.
I just heard the word “cancer” and I felt it was Goodnight Vienna! It was a moment of sheer terror because you haven’t got all the facts, all the information, and you just hear the word “cancer” and nothing else.
The worst bit was the waiting. If you could have your tests, and see someone the next day, it would be much less worrying. That’s not knocking anyone in the health service at all – they all work so hard and been amazing to me – it’s just the way it is.”
Shock turned to disbelief for Jean who says she’d always had a healthy lifestyle.
“I couldn’t believe I had bowel cancer as I’d always been particular – I exercised, I ate fibrous foods, and was careful about my diet. My screening tests had also come back clear.
When I discussed this with the hospital, I was told the test we are given in Wales is only dependable if you are bleeding at the time. I also didn’t lose weight or have any pain – nothing at all – apart from a feeling of downwards bearing pressure.
I did have genetic counselling after the results because of my dad, but they couldn’t make that family connection.”
Desperate to talk to someone, Jean turned to Tenovus Cancer Care. Already a member of the Barry Sing-with-Us choir, she’d heard about the Support Line too.
“I called the Tenovus Cancer Care Support Line after having the results. A nurse called me back straight away. It was great to be able to talk to somebody who knew exactly what I was thinking and feeling. I’d found it difficult to talk to my family. They are just being brave for you, and you’re trying to be brave for them, and somewhere, between that, no one really discusses how you really feel.
I just couldn’t talk to my husband Mick. He’s the most amazing man and husband but he just cannot cope that way – he shuts down and it’s the same with my children.”
Jean then had surgery – a procedure called an Ileostomy where the small bowel is diverted through an opening in the stomach to create a stoma. The procedure was a success, but only days later Jean was rushed to into the operating theatre.
“My bowel had effectively died. Everything had seemed fine after the procedure, but blood tests had showed “my levels” were high. I must have had an infection or something. Even I could see my bowel was dead on the camera images – it was grey. They operated the same night, and my surgeon told me it had been touch and go.”
Jean could not start Chemo until three months later than originally planned due to the setback. When she did, she was treated at home, in tablet form, and started the healing process which went well.
For more than four years Jean’s condition remained in a “stable” condition, but a blood test in early 2021 revealed worrying indicators in her bloods, and a concern the cancer had returned. Meanwhile, Covid-19 cases were rocketing, and the UK was heading back into a national lockdown.
“At that point I hadn’t had a scan for a year, due to the Covid-19 pandemic, and I was immediately sent for one, says Jean. “When I next met with the bowel team – the consultant told me the cancer had spread to my liver where they’d found a 4cm tumour.
“I’d been confident I was going to reach five years, be discharged from medical supervision, and move on with my life. I was told with a metastatic cancer you don’t always have symptoms, and I hadn’t. Once again, I thought it was Goodnight Vienna!
More scans followed. I met once more with the liver team, and it was decided to operate. The surgeon said I was about to lose about 10% of my liver. Then, during surgery, they found another smaller tumour, under the original one. This meant I lost half my liver in the end – along with my gallbladder.”
Jean, like so many other people in lockdown, endured surgery without her loved ones by her bedside.
“Mick just walked me to the hospital door, and that was it. It was very isolating. I had the op the following day and was in theatre eight or nine hours. Back on the hospital ward we kept each other going – the other patients were amazing.”
The op was successful, and Jean was discharged after five days. She soon started Chemo once more, at first intravenously at Cardiff’s Velindre Hospital, and then by tablet at home.
Jean’s life is returning to where it had been before her bowel cancer diagnosis. She still regularly attends Sing-with-Us choir practice, close to home, with her bestie Jayne, which she loves.
Jean explained: “My friend persuaded me to join the Sing-with-Us choir after I saw them perform at the Glastonbarry Festival, a music festival held in my hometown.
I said to her, “really but I can’t sing!” and my friend just laughed and said it’s not about being a good singer, it’s much more than that!
I find singing so joyful and healing. After choir sessions, I feel I have been for a long walk – it’s just so relaxing.
Part of the reason I joined the choir was because my parents both passed away from lung cancer – they were heavy smokers. Cancer has been a big part of my ancestry and life. By being at choir, I am acknowledging that, helping myself, and others too.”
Also loving to practice Tai Chi and walk in Gower where she and Mick have a caravan, Jean says she is enjoying family life.
She says the most worrying times are when scans and blood tests are looming.
“I get good and bad days. I also get Scanxiety. When scans are due, it’s a worrying time for us all, but I try to stay positive. I consider myself to be one of the lucky ones though, as I have always been in the right place at the right time to be treated.
I’m a private person at heart but want to make a difference. By sharing my story, I’m able to take control and even be a force for change. I hope to inspire others.
I’ve stayed positive throughout my experience, and extremely grateful for the wonderful care and treatment I’ve received. I am now ready to enjoy my life and appreciate everyone that has been a part of it.”
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