Battling bowel cancer

Fiona Cullen and her little pride and joy, Morgan, make the most of every moment together.

Last year, Fiona Cullen received the devastating news that she had bowel cancer, one of the deadliest and most common forms of the disease.

Yet, being in her late 30s, receiving a much-needed colonoscopy, resulted in a drawn-out process and delays that made international news headlines.
Now a mum to one-year-old Morgan, she’s fighting to be there for each and every precious moment.

YOU magazine reporter Megan Gnad spent time with Fiona to discuss the stress and trauma of a cancer diagnosis, the path to recovery and her message of never taking no for an answer.

The joyous celebration of a child’s first birthday is a major milestone in any family.

Marking a year of growth, development and unbelievable change, it is the parents who can breathe a sigh of relief and look back at all the ups and downs they have conquered.

When Fiona Cullen celebrated her son’s first birthday recently, the occasion was tinged with both disbelief and elation.

There were moments over the past 12 months, when she never thought she’d have the opportunity to be there for this remarkably special moment.

That preceding year had been fraught with the sheer turmoil, agony and fight through a diagnosis of bowel cancer.

But her strength and resolve meant that when it came time to celebrate Morgan’s first birthday, she was there, organising and celebrating the whole occasion. The life and soul of the party.

The journey she’s had to take to make sure she can experience these special moments has been fought with a powerful determination.

Fiona Cullen’s long fight began when she first started noticing a change in bowel habits at least five years ago.

Fiona with Morgan and her mum, Gené.

She had experienced bouts of anaemia and had recently taken up running, which she thought forced her to go to the toilet more often.

But, logic swept her fears aside. Instead she experimented with different diets, was tested for coeliac disease and put changes down to work stress. She even ended up googling ulcerative colitis and Crohn’s disease after colleagues suggested it may have been the answer to the issues.

The Whangarei native then made the move down south to take up a position at the Ashburton District Council in information management.

While living in Rakaia, symptoms subsided, but never went away completely.

When the bleeding started that lasted for three days, she knew she was dealing with something much more serious.

“Right up until I was diagnosed, I wouldn’t have thought it would be cancer,” she says.

“Up until the bleeding, I didn’t consider it to be too much of an issue, I just thought it was running and my diet.

“After a few days of being freaked out, I went to the doctor and saw the nurse and doctor who thought they felt scar tissue.”

Referred to a specialist, any further investigation was declined, most probably because of her young age, she says.

But when symptoms persisted, Fiona’s mum, Gené, persisted, “hassling” her to go back and be re-tested.

In this short window of time, a miracle came in a bolt from the blue.

Fiona was pregnant with a child she never thought she would have.

The exciting news forced her to address the remaining health concerns (she was still experiencing bleeding), and, by this stage living in Ashburton, she went to a local doctor’s surgery to be checked again.

“The doctor couldn’t believe I had been turned down. She did everything she could to make sure I was seen and that still got turned down,” she said.

However, at the start of the pregnancy, she experienced anaemia again and was referred to a paediatrician who wrote letters saying she needed to be seen urgently.

Her doctor also persisted and managed to ensure she had an appointment by the time she was 30 weeks’ pregnant.

“The specialist felt in my rectum and told me it was cancerous,” she explains, bravely and stoically.

“He said, ‘I’m 98 per cent sure’.”

The following week I went to Christchurch Hospital for a colonoscopy and an MRI scan.

She was diagnosed with bowel cancer on May 31, 2016. By this time, the bowel tumour was 10cm and sitting down was becoming uncomfortable. The MRI also discovered spots on her lungs.

“When I got the news — I got home, lit the fire and lost it,” she said. “I thought, I just have to sort it out. Someone was relying on me, and needing me, all I could think about was him, basically.”

The time was a tragic bittersweet symphony of heartache, contrast with the excitement of Morgan’s impending arrival.

A little fighter, he was delivered at 32-and-a-half-weeks, weighing just 5 pounds, 2 ounces.

“He was strong and had been given steroids before he was delivered to help his lungs,” says his proud mum.

“He spent one day on oxygen and only four weeks in the NICU.

“He almost knew he was coming early and knew he had to grow fast.”

Fiona was suddenly thrown into the world of being a first-time mum to a new-born. Being a patient was pushed to the side for a moment.

Oncologists gave her six weeks to recover from the caesarean and she spent time recuperating and relishing her new baby at Ranui House in Christchurch, a special “home away from home” for out-of-town families whose loved ones are undergoing hospital-based medical treatment.

“I have always been a practical person,” she says, of how she dealt with the struggles at the time.

“It is what it is and I can’t change it or when it’s going to happen. With cancer, you’re given the gift of time. Unlike someone having an accident or a heart attack, you know your time is limited and you can spend your time making memories. You look at it from a different perspective.”

Fiona then started chemotherapy tablets and radiation for six weeks.

After an agonising six-week wait, she was re-scanned and the tumour was hardly visible.

By the November, she underwent surgery to remove the growth, surgeons remarking at her bravery and attitude when she told them; “just do what you have to do”.

The truth was, at this point, they didn’t know what they were going to find, but it was a success. Everything seemed to be progressing well, until she had another scan after the operation to check on the metatasis in her lungs, when results showed the cancer had sadly not reacted to treatment.

“They said there were no options and they would not operate, and gave me two to five years,” she said.

“That was really, really shocking to hear that. I thought we were getting on top of it and to be told that …”

Her first thought was that Morgan wouldn’t remember her.

Doctors offered Fiona the option to do further chemotherapy, but it came with the alarming advice that she should carry on living her life and do the chemo when she was ‘really sick’.

Stubborn and determined, she wanted to prove them wrong, and sought the help of her current Ashburton-based oncologist.

She’d be taking the treatment option now, thank you very much.

She underwent four rounds of chemo tablets and the IV version before another scan, which showed the tumours are shrinking.

She will continue with another four rounds and then doctors will have to reassess the possibilities.

For Fiona, the attitude of remaining positive and feeling like she was “actually doing something” tangible to fight the disease, helped her get through this dark time.

And, of course, the bright little light that came in the form of Morgan, and the selfless, incredible support from her mum, who also moved to

Ashburton in the midst of the ordeal.

Fiona hopes to raise awareness that age should not be a barrier to being tested for serious health concerns.

“Morgan’s done really well,” says Fiona.

“After the IV I’m out for three days in bed. I can control the nausea, but I’m tired, so I couldn’t have done it without her.

“She’s retired and she’s been looking after him in the middle of the night.”

While you would expect the young mum – who celebrates another milestone, her 40th birthday on June 26 – to be angry at the delays in her diagnosis, she says it’s more a feeling of disappointment.

“Right from the start, I was never angry. People around me were angry, but it won’t help it.

“I was disappointed that your age is a barrier to being seen and diagnosed. I want to try and get that out there, people really need to push to get seen.”

There is still somewhat of a disconnect around how we deal with and approach bowel cancer, she says.

She highlights an incident before her illness when a breast cancer scare couldn’t have been a more different experience.

When she noticed bleeding, she was pushed through extremely quickly. It turned out to be a non-cancerous growth inside a duct and she went through surgery to have ducts in one breast removed.

“With breast cancer, it’s become a poster child and there’s a lot of funding and it’s easier to get seen,” she says.

In contrast, she remembers seeing an advertising campaign in her work bathroom, highlighting the symptoms to watch out for in relation to bowel cancer.

She had already experienced four out of five symptoms and still it was a struggle.

Unfortunately, this story doesn’t seem to be an isolated case.

The Facebook support group she joined features many similar heart-breaking stories of difficulty in getting seen, and she estimates a good portion of members are under 50.

“All cancers can happen to all people of all ages,” she says. “It really needs to change.

“If you’re bleeding from your bowel, you should be given a colonoscopy, because it could be something simple like haemorrhoids or a cyst, but it could also be something else more sinister.

“There’s a huge demand in Canterbury, so there’s a long waiting list.”

After a year of anxiety, Fiona finally feels she can start looking to the future.

While she was on maternity leave from her council job for the majority of her illness, she says the team has been amazing.

“It’s tricky, but once I’ve finished this and got it kicked, I would love to get back to work.”

When a Givealittle crowdfunding page was set up by friends to support Fiona, her story was soon picked up by both local media, on, and as far afield as the online Australian branch of the UK’s Daily Mail.

She was overwhelmed by the reaction and was soon inundated with offers of photo shoots, glamourous pamper days, and practical support.

At first it was hard to accept help from friends, let alone strangers, but she soon came to see it was a healing process for her own family, as well as a community willing to step up and help.

“You don’t do it alone,” she says. “Some people like to shut down and deal with it alone, you don’t want other people to think you’re weak.

Accepting help is not a sign of weakness, it’s beneficial to both those that offer as well as, more importantly, to you.”

She has now been in Ashburton for three-and-a-half years and has recently bought a home in Tinwald with her mum.

A fantastic support network, life-long friendships and community spirit, have made it clear that Mid Canterbury is home for the trio.

Her message to anyone with concerns about their health is simple. If you have changes, get them checked out.

“If you are worried about something, don’t stop and sit back and think, it’s nothing. It’s better to be checked properly. If you need to, change doctors in order to find someone who will help you fight for specialist care.

“And having now done chemo, always do everything you can, even if they say to you it’s game over, don’t give up.”

Sure, she says it would be easy to dwell on what might have been if her cancer had been picked up sooner, but she also knows that may have resulted in her not being blessed with gorgeous Morgan.

He is her world. The reason she puts on a brave face each and every day to battle whatever life might throw at her.

“Initially, I was looking far ahead, then I got the bad news and thought I might not see him do this or that, but I didn’t want to dwell on that and be sad. I’m living in the moment,” she says.

“I would think, I don’t care what they say, I’m going to see him graduate and see his 21st and stay as positive as I can.

“And the more you talk about it, the less of a demon cancer becomes, because you’re neutralising it. It’s a bump in the road and we are just going to get over it.”