Tania Hilliam looked a stage 4 bowel cancer diagnosis in the eye and declared "you're not going to get me". Before being told the devastating news, the Tauranga woman had spent 14 months questioning her symptoms with doctors, only to be told she was young, had no family history of bowel cancer and would be okay. As part of Bowel Cancer Awareness Month, Rotorua Daily Post journalist Kelly Makiha talks first hand about being by the side of her best friend "Tarn" through the fight of her life. She urges you to read her story. It might just save your life.
We walked through a park kicking up the autumn leaves under our shoes.
The deafening sound of shocked silence was broken when Tarn looked at me and said "I'm going to be okay though aye, Best?"
For the first time in our friendship, I lied.
"Of course you are, Best."
It's been 33 years of best friendship and "Best" is what we've grown to call each other.
But that day in April 2019 was the worst.
We had just come from Tarn's doctor's surgery where her GP clumsily read out her MRI and CT scan results off a computer screen with her back to us.
Tarn, then aged 42, had found out a week earlier she had bowel cancer and today's appointment was to hear the scan results to find out if it had spread anywhere else.
The GP was muttering stuff about cancer metastasising from the bowel and there were spots on the liver. We also heard the words lymph nodes. It didn't sound good. But we weren't sure.
The GP then got on the phone to "someone who might know more" and she apologised for not understanding the results.
Still, we sat silently in her chairs looking at her back listening to her talk on the phone.
I was on one side of Tarn squeezing her hand and her sister, Selena, was on the other side doing the same.
We were both trying to keep Tarn reassured while wondering "is it normal to hear bad news like this?".
We got home to Tarn's house holding the piece of paper with the scan results still unsure exactly what it all meant. We had been told it was stage 3 but then the piece of paper said it was stage 4 - the most severe form of cancer.
Desperate to just understand, I rang my doctor, Rotorua's Cate Mills. I put her on speaker phone and read her Tarn's results hoping she could explain properly what this meant.
In her soothing and caring voice, she explained it in black and white. Finally, we had clarity - even if it wasn't what we wanted to hear.
Growing up in Timaru, I realised at intermediate school Tarn had an awesome fringe, the coolest hair bobbles and most styley PE sneakers. So naturally being 11, I desperately wanted to be her friend.
Once we started hanging out, we never stopped. I moved to Rotorua when I was 18 but we kept in almost daily contact. After the Christchurch earthquake, she and her sons, Isaac and Oliver, moved to Tauranga to be with her sister, Ange, and two nieces, Skye and Shaye, and I couldn't have been happier.
We are inseparable and laugh constantly.
I'd always been the friend who had made everything okay for Tarn.
When we were kids I'd make sure she didn't leave her jacket behind, I helped her write her first CV and I'd vet every boyfriend along the way to make sure they were good enough for my Best.
But on that day in April 2019, I couldn't fix things.
That horrible appointment with her GP was the end of a series of shocking mishaps from medical professionals who, in my opinion, severely dropped the ball for my Best.
In March 2018, Tarn had made a doctor's appointment after being alarmed at seeing a couple of drops of bright blood on her toilet paper a couple of times.
The GP put a tiny camera up inside her and ruled she had a haemorrhoid. He gave her a script for cream, which she never used because she had no pain and nothing needed soothing.
Months went past and Tarn told me she was still getting the odd spot of blood. I told her to go back to the GP urgently.
She saw a locum in August 2018 who seemed concerned and made a referral to a specialist. Problem was, that appointment was a four-month wait.
Worried her symptoms were worsening, she went back to a GP in September 2018 who pressed on her abdomen and weighed her. The GP asked if there was any family history, which there wasn't, and concluded it was just the haemorrhoid.
Tarn asked about an MRI and how much it would cost if she wanted to pay for one now. But he assured her she was too young for cancer and given her family history, she'd be fine.
I remember Tarn telling me she felt a bit embarrassed about being stroppy and persistent by asking for an MRI because he patted her on the back as if to say "you're being silly".
Meanwhile, Tarn was losing weight, she was often tired, she was bloated and her tummy would be upset a lot. She wondered if she had a milk intolerance so switched to soy. Then she figured she could have issues with gluten so tried a gluten-free diet.
Tarn spent many hours Googling and realised that, unlike haemorrhoids, she had no pain and discomfort. She was fit, healthy and climbing Mauao most days.
We'd talk about it often and I remember saying to her "go to the doctors and beat your fist on the desk and demand to see a specialist".
In December 2018, she saw the specialist who performed a sigmoidoscopy and told her it was a haemorrhoid.
Tarn questioned this diagnosis and told him she was concerned about her symptoms. He too patted her on the back and reassured her - no family history and you're too young.
Instead, this specialist put her on a waiting list to have her haemorrhoid banded in four months' time.
In the three weeks leading up to that April 2019 appointment, Tarn would go to her GP every week on her day off asking to be seen earlier - complaining about the massive amounts of blood she was now experiencing and loose bowels.
Each time, the doctors tried to move her appointment forward but couldn't.
So 14 months after her first doctor's visit, a tired, weak and worried Tarn finally gets her second specialist appointment (a different specialist from the first) and he greets her by saying "hi, so we are banding some haemorrhoids today?".
I wasn't at this appointment, but Tarn told the specialist she didn't think it was haemorrhoids and rattled off all her symptoms.
"I could tell by the look on his face he knew there was something seriously wrong," Tarn told me.
He did the colonoscopy and Tarn saw a mass immediately on a nearby computer screen.
"I said 'what's that?' and he tapped me on my leg and said 'I'm sorry, that's cancer'."
The tumour was 5.5cm long.
Her MRI and CT scan followed quickly in the coming days. Within a week, it was time to go back to her GP and get the results.
The night before that awful results appointment, Tarn said to me "Kel, I'm worried the cancer has been busy".
I think deep down she knew her bowel tumour had been in her body for too long.
Her gut feeling was right. The cancer had spread to her lymph nodes and had formed three tumours on her liver's right lobe. There was a spot on her left lobe too but that ended up being nothing, allowing surgery to go ahead.
She was considered lucky because a lot of liver cancer was inoperable and tipped you into terminal territory.
A specialist cancer nurse told us early on that palliative care was so good these days, you could live comfortably for years.
While I'm sure she was trying to be comforting, hearing about palliative care when you're fit and healthy and quite frankly shouldn't even be in that position just made me angry.
I couldn't stop my tears and rage. How dare so many professionals get this so wrong. This is my Best.
But Tarn wasn't angry and she told me not to be either. In her words, she said she couldn't have hate in her heart right now. She had a bigger fight on her hands.
Her oncologist, Will, and bowel surgeon, Janet - who she said were both incredible all the way through - told her "we're going for cure, but we're not starting from a good place".
Tarn only heard the words "we're going for cure" and from that day she fought.
Three months of chemotherapy and that tumour shrank to 2cm.
I would tag-team the chemotherapy trips with all her amazing friends, sons, sisters and nieces. She had so much support it wasn't funny.
Each round took its toll and to see her suffer was hard. It wasn't cancer making her sick, it was chemotherapy. But despite being bed-ridden ill, she dug deep and knew it was doing its job.
She went to Auckland Hospital and had a chunk of her liver cut off. It was a risky and "marginal" operation because one of the tumours was close to a main artery.
I was with Tarn in Auckland for the days after this operation as she gained the strength to be transferred to Tauranga.
After every nap, she'd wake with the biggest smile on her face excited to see how much more strength she had.
She spent a month recovering from that operation before being hit with another three months of chemotherapy.
With every drop that went in, she'd get sicker, weaker and thinner. She'd just start to feel better and it was time for another round. But she fought. She was going for a cure.
Was it all working? Will there be more bad news?
I remember all of her friends and family packing the oncologist's office at the Tauranga Cancer Centre as he delivered the new scan results to Tarn and her gang of supporters.
The chemotherapy was working. There were happy tears, fist pumps and hugs all around as he said it. The "Mothership" bowel tumour had shrunk so much it couldn't be seen on a scan (though it was still there). The liver operation was also a success.
But the road to cure had more mountains in the way. The months that followed saw radiation in the pelvic area, major bowel surgery (bowel resection and temporary ileostomy) where the tumour was removed and a stoma bag put in place.
Tarn had the stoma bag for five months from January last year before her final surgery in June to "put her bowel back together" and remove the bag.
She's now had two rounds of scans and blood tests and it all looks clear, officially it's called NED (No Evidence of Disease).
I've wanted to write about my beautiful and amazing friend for some time. But I'm scared. She's not out of the woods.
Because her cancer metastasised (spread), there is a 30 to 50 per cent chance she will get it back - and if that happens it's more likely to be in the next two or three years.
If she's still getting clear scans after five years, she's considered cured.
Her story is one of strength and survival and she's lucky. But she is now on a mission to help others avoid going through what she did. She feels if they had checked for cancer earlier, it wouldn't have spread.
Doctors are professionals. They would never intentionally dismiss or misdiagnose anyone but the reality is, it happens.
Tarn's message is to be in charge of your own body - question and question again. "Fight and ask for nothing but the best," she has told me, and push hard and don't be embarrassed about being demanding.
I know now that writing this story is not jinxing my Best. It's my way of being that friend again who can try to help fix things for her.
Turns out I didn't lie to Tarn back in April 2019.
When I said "you're going to be okay Best", I was telling the truth.
Tania Hilliam has taken her case to ACC which has ruled against any compensation as it didn't fit the criteria for a treatment injury. She is concentrating on a positive mindset and getting healthy but hasn't ruled out taking the matter further.
Best advice
:
• Check for cancer first
• You can be young, fit and healthy and still have stage 4 cancer
• Second guess everything
• Don't just put it down to a food intolerance
• Don't just think your low iron can be cured with tablets, you might have a bleeding tumour
• Be persistent with doctors and push for specialists and second opinions
• Research and plan
• Be happy and positive
• Surround yourself with the best support
• Fight and fight harder
Why we need to catch bowel cancer early
A leading specialist in bowel cancer in the Bay of Plenty says there is no age limit when it comes to having bowel cancer.
Dr Alex Lampen-Smith said it was "disappointing and tragic" to hear about cases where people have gone to their doctors with symptoms that could be cancer but it hasn't been picked up.
"The message is if you have symptoms like bleeding from the bowel and loser bowels, see your GP. I would hope a GP would refer them to us if they have those symptoms."
She said the reality was that for young people, symptoms were far more likely to be "non-sinister".
"There are very small numbers, but it does happen. A vast majority of 42-year-olds with symptoms are not going to have cancer but for the people it does affect, it is massive."
Dr Lampen-Smith said symptoms in any age group needed to be taken seriously by patients and doctors.
"They need to be examined fully and see if there is any obvious signs of harm. If there is any doubt in a GP's mind about whether it is just a haemorrhoid, they should refer."
Dr Lampen-Smith, who is the Bay of Plenty National Bowel Cancer Screening Programme leader, said the programme targeted 60- to 74-year-olds and allowed doctors to catch cancer before symptoms started.
"Anyone in that age group gets sent a pack and they just put a bit of poo on a stick in the privacy of their own home and send it in. It screens people who are in that age group so we can catch the cancer early."
Lakes District Health Board chief medical officer and surgeon Dr Gerrie Snyman said there was a lot more information in the media now because of the National Bowel Screening Programme.
Dr Snyman said being aware of the symptoms of bowel cancer was the first step to preventing it.
"Symptoms may come and go so don't wait if you have any of these concerns, no matter what age you are."
Dr Snyman said the bowel screening programme offered free screening every two years.
"When it is your turn you will receive an invitation letter a consent form and a free bowel screening kit. It is very important to return the kit as advised in the instructions."
When asked how treatable and curable bowel cancer was, he said when caught early 90 per cent of bowel cancer cases could be treated successfully.
"While no cancer is completely preventable you can lower your risk of bowel cancer by eating a healthy diet and exercising regularly ... Bowel cancer can affect anyone at any age, it is more common in people aged over 50. But it is treatable and beatable if its detected early enough."
Bowel cancer facts
• Bowel cancer is the second-highest cause of cancer death in New Zealand, second only to lung cancer
• The incidence of bowel cancer in New Zealand is one of the highest in the world
• More than 3000 New Zealanders are diagnosed with bowel cancer every year
• More than 1200 die from bowel cancer each year
• More than 350 people under 50 are diagnosed with bowel cancer each year
• It is estimated that one in every 18 New Zealanders will develop bowel cancer in their lifetime
• Men are at higher risk of bowel cancer than women. The most recent New Zealand data shows men are diagnosed with bowel cancer at 44.8 per 100,000 population compared with women at 35.2 per 100,000 population.
• For Lakes District Health Board, the prevalence of bowel cancer is 36.29 per 100,000 population.
Bowel cancer symptoms may include
• Bleeding from the bottom (rectal bleeding)
• Change of bowel motions/habits that come and go over several weeks
• Anaemia
• Severe, persistent or periodic abdominal pain
• A lump of mass in the abdomen
• Tiredness and loss of weight for no reason
Certain factors can influence your risk of bowel cancer. These include:
• Being over 50 years in age
• A diet high in red meat and or processed meats and animal fats
• A diet low in fruit and vegetable fibre
• Lack of exercise
• Obesity or being overweight
• Smoking and alcohol
• A personal or family history of bowel cancer
• Genetic factors associated with bowel cancer
• Inflammatory bowel disease (including Crohn's disease and ulcerative colitis)
• Previous diagnosis of bowel cancer