What would you do for another chance at a normal life? For one Napier woman, that involved getting her organs pulled out and her body chilled while chemo fluids heated to 42C flowed through her body. James Pocock reports.

Grace (Kanila) Patel nearly died twice in the 16 days of recovery in hospital that followed a gruelling 11-and-a-half-hour surgery to treat her rare and incurable cancer.

Pseudomyxoma peritonei (PMP), commonly known as “Jelly Belly”, is a rare tumour that grows slowly and causes a build-up of mucin (a jelly-like substance) in the abdomen and pelvis.

It affects between one and two people in a million each year. It is not hereditary and its cause is not known.

Only 12 Hipec surgeries, a process to treat cancers in the abdomen, are funded by the Government annually.

“They cut you open and they peel off every single layer of the internal cavity, including your organs,” Patel told Hawke’s Bay Today.

“I lost quite a few of my organs in the last surgery because my cancer had spread. A portion of my bile, my pancreas, gallbladder, my spleen - everything has been taken out,” she said.

“Once they have taken out everything, they fill it up with the heated chemotherapy and they rock your body for 90 minutes to allow that solution to penetrate everywhere to kill any remaining cancer cells.”

“They had to bring my body into a negative temperature where I could have died on the spot to manage the heat that my body was receiving so I wouldn’t go into the shock from the heat.”

She said she was unable to do anything at all for the first eight days after the surgery, with an epidural in her back for the pain, along with an array of other tubes all over her body.

“I almost died twice. I developed pneumonia at first after the long surgery, and secondly, I developed fluid in my pelvis area,” she said.

About a year and a half earlier, a colleague of Patel suggested she go to the doctor after her stomach began growing rapidly.

She went through six months of misdiagnosis, which culminated in an eventual “meltdown” in her doctor’s office, after which she was put on the fast track for a scan in June last year.

“I was told to go on a protein diet, do some ab crunches, hire a personal trainer, go to the gym, go for a run, get a dietitian, but my stomach kept on growing.”

Within 24 hours she was diagnosed with cancer, but it wasn’t until samples were sent to pathology following her first surgery in August last year that doctors confirmed she had PMP.

“They took out a soccer ball-sized tumour on top of my left-hand side ovary and 14 litres of jelly out of my stomach cavity.”

Patel said she wanted to stand with others who had lost their hair to chemotherapy and raise awareness that it was not a battle that could be fought alone. Photo / Warren Buckland

From there, it only got more difficult for Patel and her family.

“My uncle was told he won’t see Christmas because of his cancer - the same week, I was told I have cancer.”

She went through assessments to see if she qualified for the Hipec surgery, a wait she described as “traumatising”.

She said her family were all in Auckland, and they had spent a lot to be able to travel back and forth often to support her through appointments in which they often learned no new information.

She wants people to be aware of the raw details of her story.

“People need to be aware ... this is not a journey that one can fight on their own. You need an army to stand on your behalf,” she said.

Since the surgery, she has had to learn to walk again and adapt to a life with cancer.

“My cancer is not curable, it is only treatable, so I have to live with the fact that it can say hello to me anytime and just make the most of life,” she said.

“Life is too short, and I need to make the most of it and give back to the community for what they have done for me and my family.”

She hasn’t wasted any time, raising about $5260 for the Cancer Society as of Sunday following her shaving her head on Friday.

“I was quite fortunate I didn’t lose the hair through the chemo. I want to stand next to those that did and support them.”

James Pocock joined Hawke’s Bay Today in 2021 and writes breaking news and features, with a focus on environment, local government and post-cyclone issues in the region. He has a keen interest in finding the bigger picture in research and making it more accessible to audiences. He lives in Napier. Email him at [email protected].