Feature

Journalist writes about living with bowel cancer at 21

Stephanie Kay says she complained to her GP several times before her worries were taken seriously.
Stephanie Kay says she complained to her GP several times before her worries were taken seriously.

She put thick, white surgical stockings onto my legs, to prevent blood clots and made sure my theatre gown was done up properly.

I was the only patient there, in my blue theatre cap and slippers, anxiously waiting to be called.

She wished me luck and said goodbye and then it was just me and Mum.

I told myself I would be okay, that I would be fine and my fears were only figments of my imagination.

At last a different nurse came to find me.

I said good-bye to Mum and told her I'd see her on the other side.

She said she loved me and I was worried that I'd cry.

I didn't want her to leave.

I hopped up onto the hospital bed and they wheeled me into a small room.

I met my anaesthetist and another kind nurse, who told me it was his job to make sure I felt okay, so if I needed anything, all I had to do was ask.

They put in two drips, one in each arm and suddenly I was freezing and the nurse wrapped me in layers of blankets.

I started to cry and he looked concerned.

I explained I was just relieved. So very glad the time had finally come.

He smiled and helped wheel me into the operating room.

The theatre was packed; I'd never seen so many doctors and nurses in one place.

My consultant asked me how I was feeling. I said I was ready.

The last thing I remember was being slid across, from the comfort of my warm hospital bed, to the sterile operating table.

It was December 19, 2012, and I was having a restorative proctocolectomy to save my life.

I had bowel cancer.

According to Bowel Cancer Australia, the land down under has one of the highest rates of bowel cancer in the world.

Bowel cancer is the second most common type of newly diagnosed cancer in Australia and every year around 14,410 Australians are told they have bowel cancer.

Based on present trends, one in 12Australians will develop bowel cancer before age 85, and I was one of them.

At 21, I was an abnormality but sadly one that's becoming increasingly common. Many men and women, young and old, are diagnosed with polyps.

Those under 50 make up 10% of new bowel cancer diagnoses.

The best thing about bowel cancer is if it's detected before it has spread beyond the bowel wall, the chance of surviving for at least five years after diagnosis is around 90%.

The worst? Fewer than 40% of bowel cancers are detected early.

Bowel cancer is Australia's second biggest cancer killer after lung cancer.

It claims the lives of around 3982 people every year, yet it's one of the only preventable cancers in the world.

A bowel polyp, many of which are destined to become cancerous, can be removed long before it changes or spreads.

Stephanie Kay surrounded by a team of supporters in hospital.
Stephanie Kay surrounded by a team of supporters in hospital.

At 21, I had 72 of them. (Most people have less than a handful by old age.)

Thanks to a colonoscopy, my cancer was caught in its infancy.

For me, the sheer number of polyps ruled out a resection, where only a part of the large bowel is removed.

I was told I'd need the entire organ removed and I'd probably have an ileostomy (a type of stoma, where waste goes straight from a diverted small bowel, into a bag attached to the belly wall) forever.

It was hard enough to believe I had cancer, let alone that I would be going to the toilet via my tummy.

I was diagnosed in October 2012 and very quickly my surgeons met and decided, as I was young and fit, they would try a different type of surgery.

A radical and complicated procedure, where a portion of the small bowel is fashioned into a replacement rectum.

An ileo-anal anastomosis, commonly called a J-Pouch, would mean I would only have an ileostomy bag for a short time, while the pouch healed.

The surgery would not only save my life by removing my cancerous large bowel but meant eventually I could use the toilet like everyone else.

Associate Professor Graham Newstead is the chairman of the International Council of Coloproctology and spokesman for Bowel Cancer Australia.

As an experienced colorectal surgeon, he's on the front line of the bowel cancer battle.

"I want to make bowel cancer a dinner-table conversation," he said.

By not talking about it, he says, too many people are getting diagnosed too late.

"In a perfect world, everyone would get colonoscopies but it's invasive and expensive," he said.

A bowel cancer screening test called a Faecal Occult Blood Test can detect small amounts of blood in your bowel motion.

The FOBT looks for blood in your bowel motion, but not for bowel cancer itself, and is recommended for average risk patients every 1 to 2years, from the age of 50.

The former federal government offered a free bowel cancer screening test kit to people aged 50, 55 or 65 between January 2011 and December 2014 and promised the full program would be rolled out by 2034.

In August, the Coalition promised a $46.4 million acceleration of the program's rollout to enable all 50 to 75-year-olds to take up biennial screening from 2020.

BowelScreen Australia test kits are already available in most pharmacies and cost as little as $35.

Dr Newstead said regular colonoscopies were still recommended for those with a higher risk of developing the disease, such as people with a family history.

"The best advice is to know your family history and to be investigated," he said.

"Don't be embarrassed, don't be shy, don't be an ostrich."

He says many people still fear a bowel cancer diagnosis may mean a stoma (ileostomy bag or other) for life.

"The instance of stomas is low these days," he said. "Very few people need their anus removed."

Dr Newstead, who works closely with Bowel Cancer Australia, said a major awareness campaign was needed.

BCA Chief Executive Julien Wiggins agrees.

"Australians are reluctant to talk about bowel cancer," he said.

We're talking about bowels, bottoms and poo; there's no nice way to describe it.

He said raising awareness about bowel cancer required a co-ordinated and comprehensive awareness campaign.

Yet, getting big business and celebrity sufferers to support the charity is difficult.

"To say it's a challenge, is an understatement," he said.

Very few Australian public figures are willing to share their bowel cancer story and businesses shy away from supporting what many still consider a crass subject.

So what causes this killer?

As with many cancers, a mixture of lifestyle and genetic factors are suspected to play a part.

Studies have linked processed foods and a lack of dietary fibre to an increased risk of bowel cancer, so BCA recommend people enjoy a wide variety of nutritious foods.

They also advise people take care to limit saturated fat and moderate total fat intake, limit the intake of red meat and processed meat.

Limiting alcohol intake and quitting smoking can also help.

Regardless, healthy people can and do get bowel polyps which become bowel cancer, which is why screening is vital for everyone.

According to BCA, the risk is greater if you are aged 50 years or over (risk rises sharply and progressively from the age of 50) and have a family history of bowel cancer.

Those with a history of cancer of the colon, rectum, ovary, endometrium, or breast, a history of polyps in the colon or of ulcerative colitis (ulcers in the lining of the large intestine) or Crohn's disease also have a higher chance of developing the illness.

Other people at risk are those with certain hereditary conditions, such as familial adenomatous polyposis and hereditary non-polyposis colon cancer.

So what should you do if you're worried you may have bowel cancer?

Mr Wiggins said generating conversation and making sure you know your family's medical history were important.

"Talk about it. If you are scared and don't want to talk to your family, talk to your GP and insist that it be investigated early," he said.

Nick Lee's wife, Jodi, was only 39 when diagnosed with advanced bowel cancer.

"Being 39, fit, healthy and with no family history it came out of the blue," he said.

The mother-of-two died in 2010, just two years after her diagnosis.

Mr Lee said his wife didn't really have symptoms until it was too late.

A mass was found. The cancer was already at stage four and had spread to her lymph and liver.

Mr Lee formed the Jodi Lee Foundation in her memory.

What we're really trying to do is educate people that it's not an old man's disease.

The charity has been given a $2.5million dollar grant, to run national awareness campaigns.

"Our challenge is to make sure everyone is aware and to encourage younger people to be educated and make appropriate choice to minimise their risk," he said.

The Jodi Lee Foundation believes in promoting awareness about the high incidence of bowel cancer in Australia and by educating younger people, future generations stand a better chance to fight the deadly disease.

And some advice from a bowel cancer survivor?

Early detection saves lives.

I'm not one to preach but please, if you're worried, persist.

Never allow anyone to tell you you're too young for bowel cancer.

I had no family history and was an otherwise healthy woman in her early 20s.

I complained to my GP several times before my worries were taken seriously and I'm incredibly glad I did.

Perhaps my stomach pain, bloating and changed bowel habits could have been unrelated, and my diagnosis was a complete coincidence but if nothing had been wrong, I would still be better off for bothering to investigate.

My cancer diagnosis undoubtedly changed my life.

I have a newfound appreciation for medical research that will stay with me for life.

I've witnessed more death, sickness and suffering throughout my months in hospital than some will in a lifetime.

It's also allowed me the opportunity to experience the best of people.

I was overwhelming supported by my friends and family throughout my ordeal.

They came to appointments, sat by my hospital bed and constantly loved me, even at my worst.

Thanks to an early diagnosis, I was fortunate enough to avoid chemotherapy.

Sure, I had an organ removed but it could have been so much worse.

Our society's refusal to openly discuss bowel cancer, particularly in older generations, is causing people to die.

Until we're honest with ourselves and each other, take bowel cancer screening seriously and support charities like Bowel Cancer Australia and the Jodie Lee Foundation, nothing will change.

I know that I for one am sick of thousands of mothers and fathers, sisters and daughters and brothers and sons, dying a preventable death.

Topics:  bowel cancer, editors picks, journalist, stephanie kay



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