24
Oct
2017

This was not a battle we were destined to win

Bowel Cancer Australia

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Early in 2004, in a small and smoky live music bar in Collingwood called ‘The Yak’, Mark met Vanessa.

Brought together by a shared love of live music, they quickly developed a belief that life was mostly about sharing experiences and so they lived their lives ‘doing things’ together with family and friends.

“Even the simplest of activities was all that was needed,” said Mark.

“Ness always made a big effort to turn it into something special.”

Mark and Ness were married for 9 years, during which time Mark had the privilege of becoming a father to Jess and Liam, Ness’s two children from a previous marriage.

In 2014, during the end of a trip to Japan, Ness indicated her digestion was ‘not quite right’ and that her tummy was feeling uncomfortable.

“Ness was always one to soldier on, but she ended up in the Emergency Department where a Gastroenterologist performed a Gastroscopy,” Mark said.

She was diagnosed with Acute Gastritis and was prescribed Nexium.

Approximately two weeks later, Ness had what was to be a ‘routine’ colonoscopy.

That was when a large tumour was discovered.

Within three days, Ness had two-thirds of her colon removed.

Following the surgery, Mark and Ness met with her oncologist.

“He outlined the chemo regime that Ness would go on in order to ‘mop up’ the spread,” said Mark.

“We were told the biopsy results after surgery were not good.

Ness was diagnosed with Stage III bowel cancer.

“The cancer had invaded the entire bowel wall structure and early signs of spread were already present – it was in a large number of lymph nodes already,” Mark said.

“But the confidence from all her medical staff was high and that was reassuring.”

Nonetheless, Mark felt what he described as “unbelievable fear and uncertainty”.

“My fear went from the thought that Ness would become very sick and frail to thinking this could be potentially terminal,” said Mark.

Prior to his wife’s diagnosis, Mark knew very little about bowel cancer.

“I thought it was not something we would need to worry about – being so young and healthy,” Mark said.

The learning curve during her treatment was steep, not just for Mark, but also for Ness.

“We thought Ness would lose her hair very quickly on chemo.

“It thinned, but she never did lose all of her hair,” said Mark.

“We had heard of some people being able to continue normal work and all sorts of things, but Ness was really out of action for the entire first week of her treatment and only really came good at the end of her second week, just before the treatment cycle would start again,” Mark said.

“The incredible lack of energy and just how much chemo affected Ness was tough,” said Mark.

“And then there was ‘chemo brain’. . . never knew about that!”


 

Mark and Vanessa’s daughter, Jess is studying communication design.

As a way of utilising her skills and her mother’s personal experience, she created the following video for a university assignment, which she has kindly shared with Bowel Cancer Australia.


Following six months of chemotherapy treatment, Ness was declared NED, with clear scans.

“We thought. . . imagined. . . hoped we would have a good number of years before having to worry about cancer again, but in November 2015, her blood numbers spiked a tumour was discovered in her liver during a PET scan,” Mark said.

“Surgery again and more chemo. . . this time for four or five months.”

“Once again, Ness’ disease responded to the treatment and the scans were clear – NED,” said Mark.

But in September 2016, following another blood test and a visit to the liver surgeon, Ness was told they had found cancer in her lymphatic glands at the rear of her abdomen.

“We were told this was non-operable, and being that is was discovered by a surgeon – this sounded bad,” Mark said.

“However, when we met with our oncologist, he was confident that radiation treatment could potentially eliminate the cancer.”

“We met a radiation oncologist, who was great, and he mapped out a course – 6-weeks of daily radiation hits, and at the same time Ness was put onto oral chemo tablets,” said Mark.

Ness became extremely unwell during the radiation and pain started to become a major factor and the cancer in her lymph nodes did not respond to the radiation.

“It was at this time that we started to come to the realisation that this was potentially not a battle we were destined to win,” Mark said.

“Her oncologist was comforting us, saying that with a measure of chemotherapy Ness’ disease could be ‘managed’ and that some patients live for many relatively normal years in this scenario,” said Mark.

But within a few months, there was evidence of spread into Ness’ lungs and the cancer had returned in her liver.

“It slowly became apparent that Ness’ cancer was too resilient, too aggressive, and wasn’t really being controlled,” Mark said, “and Ness was feeling worse and worse on constant chemo, and the pain was increasing.”

Toward mid-2017, Ness was beginning to suggest stopping treatment.

“We were all still hopeful that we would have her with us for Christmas and beyond, but that hope was sadly extinguished,” Mark said.

Ness passed away this October.

When asked what Mark would say to others whose loved ones had been diagnosed with bowel cancer, Mark’s advice was simple: “Seek, and accept the support and strength in the friends and loved ones around you,” said Mark.

“We had loads of people offering us help, and we eventually did need it, but actually accepting help early was surprisingly difficult."

“Don’t let your pride and ego hold you back and remember, bowel cancer is NOT an ‘old person’s disease,’” Mark said.

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