Jackie Robertson and her son Zac. Photo / Givealittle
A single mother with Stage 4 bowel cancer is fighting for more time with her nonverbal autistic son by desperately advocating for access to a lifesaving drug that is unfunded.
Cambridge resident Jackie Robertson said every day was a balancing act between giving her 14-year-old son Zac the support and childhood he deserves and fighting for her own life.
Robertson told the Herald she received the shock diagnosis in late 2023 when she was a fit and healthy 46-year-old.
Since her diagnosis, she has been an active advocate for lowering the bowel screening age and for increased access to vital drugs.
Bowel cancer is the second-highest cause of cancer death in New Zealand, second only to lung cancer.
Bowel Cancer New Zealand said the incidence of bowel cancer in New Zealand is one of the highest in the world, with more than 1200 people dying from it each year.
Robertson told the Herald some treatments can help prolong and improve her quality of life, but sadly, not all of them are publicly funded.
Bowel Cancer New Zealand said Bevacizumab (Avastin), which is a targeted therapy for metastatic colorectal (bowel) cancer, is not currently funded for this type of cancer.
Another brand of the drug has been funded for conditions such as advanced ovarian cancer, the Pharmac website says.
Robertson’s Givealittle post said Bevacizumab has recently shown much promise for people in her situation.
“I actually spoke to David Seymour [at a rally], and I’m like, ‘Why?’ How can they turn around and go, ‘We’ll fund it for this one, but not this one?’
“That’s like playing Russian roulette with people’s lives ... I believe, a lot of people are dying because they can’t afford these unfunded drugs,” Robertson said.
She said she was aware of people having to sell their homes just to afford treatment.
“It’s sad actually, like if I could, I’d move to Australia, the drug I’m on is free in Australia ... I never wanted to do a Givealittle, but I have to now,” Robertson said.
She said she thinks there should be a push for more at-home bowel screening kits, which could help take the pressure off the health system.
“If it comes up positive [for blood], it doesn’t mean you’ve got cancer, but it means get to the doctor and get looking at what’s going on.”
Robertson said she was an extremely fit and healthy marathon runner, who always had yearly blood tests and had never smoked, so the diagnosis came as a complete shock.
“I was doing a few marathons, and the last one was about August, and I just didn’t feel like I recovered well, so I called my doctor,” she said.
After getting her blood taken, she was told her liver enzymes were “really high”.
Following several negative tests for other conditions, her GP pushed for a deeper look.
After Robertson underwent an ultrasound, images showed “cloudy bits” on her liver, where she was eventually diagnosed with Stage 4 bowel cancer that had spread to her liver.
Robertson said she had put her on-and-off bleeding down to the impact of hemorrhoids after the birth of her son. She had also ascribed tummy troubles to being intolerant of certain foods.
“I didn’t have the typical symptoms, but now looking back at it, maybe I did,” Robertson said.
She said she has gone through 40 rounds of chemotherapy because surgery was never an option due to the size and location of the tumours.
Robertson said cancer has completely changed her perspective, giving her a deeper appreciation for every moment of life.
“It’s a real rollercoaster, and it’s sort of like a s****y rollercoaster you can’t get off.”
She said her son dropped down to half-days at school after his anxiety “skyrocketed” when she was first diagnosed.
“It’s really hard with Zac being non-verbal autistic. I’ve always been his biggest cheerleader in life ... you just look at him and think, ‘I just have to keep fighting’.
“They say autistic kids don’t show emotion, but we’ll be going for walks and all that, and he’ll just hook his arm around me or just hold my hand,” Robertson said.
Sign up to The Daily H, a free newsletter curated by our editors and delivered straight to your inbox every weekday.