A mum suffering from incurable radiation disease after beating cancer is rebuilding her body after stoma surgery and having her bowel and reproductive organs removed.
After welcoming her son in 2014, Petrina Barber, 41, from London, felt run down and was experiencing abdominal pains – symptoms she mentioned during her five-month check-up following the birth.
But things took a shocking turn when further testing revealed something sinister – a tumour in her cervix, which had been missed as she had given birth via C-section.
Within five days of the check-up, Petrina – who was at that point working as a hedge fund HR manager in New York – was diagnosed with advanced cervical cancer, and her life was placed on hold.
The new mum underwent radiation treatment and was eventually given the all-clear in March 2015, but midway through a move back to London that same month, Petrina started experiencing stabbing pains and was told she may have pelvic radiation disease.
While it usually affects people during treatment, the symptoms had lingered for Petrina and were causing extreme abdominal pain and loss of blood and bladder control.
“My health was terrible, but I didn’t know what was wrong with me,” she told NeedToKnow.co.uk.
“I was unable to eat properly – I would become bloated, be in agony, and constantly in A&E.
“I couldn’t get answers.
“My immune system was so low I developed shingles.
“Eventually, it was suggested that I see a bowel specialist but it became apparent that everything I was experiencing was related to my cancer treatment.
“It was clear I was developing severe symptoms of pelvic radiation disease (PRD).”
During radiotherapy treatment for the cancer, the surrounding healthy tissues can also be damaged whilst cancer cells are destroyed.
While PRD usually affects people during treatment, the symptoms persisted for Petrina and were causing extreme abdominal pain and loss of bowel and bladder control.
She said: “Soon I was losing a lot of blood.“My bladder function went, and I would wet myself and have no control.
“Sometimes there was so much blood and blood clots, urine couldn’t pass through.
“I was having regular iron and blood transfusions.
“My bladder was in a terrible state and was being looked after by my surgeon, and I was being looked after by a specialist gastroenterologist as I was unable to eat and in excruciating pain.
“I learned to live with it all as best I could.
“There’s no miracle cure – there’s the disease and managing it.
“The quality of my life was pretty low, but I made the most of what I had.
“Eventually, by 2017 living with my health condition made it impossible to work.
“I was devastated when I lost my career because of it all.
“I had worked so hard to get to where I was and felt like it had been taken from me.”
Her health continued to deteriorate and in 2018 Petrina underwent emergency surgery to remove a tumour in her bladder.
After this, she struggled to eat and drink and lost a “dramatic” amount of weight.
In addition to her bladder problems, she was told that her bowel had formed scar tissue from the radiation damage and was completely blocked, and she would need a bowel resection – an operation where the surgeon removes a damaged, diseased, or blocked section of the bowel.
Due to her ever-declining health, an increasingly weak Petrina was hospitalised and tube-fed from January-April 2019 while she waited to gain enough strength for the surgery.
She said: “I had my first bowel resection which was meant to be my happy ending – my bladder better, bowel fixed, my shot at having a ‘normal’ life after years of hell.
“But it didn’t work out that way.
“I never really recovered from the resection could never eat properly, and the disease continued progressing.”
The option of having a colostomy was floated, but Petrina wanted to avoid further surgery for as long as possible.
Sadly, she suffered an ovarian cyst rupture in September 2020 that led to her developing sepsis.
She said: “The strong antibiotics had destroyed what was left of my gut function, and the progression of the radiation disease meant I was becoming incontinent in my thirties.
“I managed my symptoms as best I could, being religious about eating nothing and dehydrating myself before I left the house as it was the only way I could go out.
“As soon as I ate or took on water, I would have to stay at home or be near a bathroom.
“My whole life was micro-managed to the letter, and my world was getting smaller and smaller.
“I did necessary tests like my scans and colonoscopies, but I knew what was coming.”
In June 2022, she was finally told she had no other options left, leaving her “devastated and in denial”.
Petrina said: “I had spent eight years sick at this point, with no happy ending, in and out of the hospital trying to stay alive.”
The following January, as her condition continued to decline, she had surgery to remove her remaining pelvic organs and bowel, and a stoma was fitted.
Despite being terrified about what it could mean to live with a stoma, Petrina came to realise that most of the limits she believed would be imposed on her life were inaccurate.
She said: “I had been told that my life was going to change significantly and I was unlikely to be able to go back to strength training or weight lifting again.
“Initially the thought of not being able to live my life the way I wanted was a terrible grieving process.
“But the reality is that none of those things have come true.
“I don’t live my life by identifying by my disease or the stoma. Those things are now just a part of me and my overall story – they do not define me.
“I believe that what we pay attention to and focus on is where our energy goes.
“I don’t pay much attention to the stoma beyond day-to-day management.
“Does my condition mean I feel less than? Less attractive, less valuable? Not at all.
“Because there is so much more to me than the stoma and I don’t let it limit me.
“It is simply a part of me that sits alongside the scars on my body as a reminder of how far I’ve come.”
Instead, Petrina has defied the odds to become physically stronger and fitter than she has ever been, regularly sharing videos of herself working out in the gym and how she adapts her workouts.
Petrina is now kickstarting a campaign called Beyond The Stoma and has been photographed proudly showing off her stoma bag, in her underwear with abs on display.
In the photo, she is dripping in gold leaf, inspired by Kintsugi, the Japanese ancient art of embracing imperfection.
In Kintsugi, gold leaf is used to embellish the cracks on objects, turning something broken into something beautiful.
Petrina said: “No little girl grows up in life dreaming that their ideal body will have a permanent stoma bag attached to them and this is further reinforced by the images we see of what’s deemed to be attractive.
“Since my recovery, I’ve been open about what I look like with a stoma bag.
“I’ve posted pictures of my ever-changing body.
“I wanted to be open because people take the lead from how you view yourself.
“I don’t consider myself broken; I’ve accepted this part of me.
“[In doing the campaign] I wanted to put out an opposing view that having a stoma isn’t
what people believe it to be, that you can live an aspirational life if you choose.
“I want greater representation for people with stomas in mainstream media which is the motivation behind Beyond The Stoma photoshoot – seeing stomas in a way people have never seen before.”
As a part of the campaign, Petrina is set to launch a specialised online platform which will serve as a community hub, providing valuable information, tools, and resources for individuals with stomas, as well as their friends and families, aimed at enhancing their quality of life.
She added: “I want to look back on my life and have no regrets, to know that I backed myself despite all the odds being stacked against me, and that when people tell me, ‘Thank you – you helped me change my life,’ ‘you helped me look at this differently’ – that, to me, is worth everything.”
