“It’s a journey no one chooses to go on – a cancer that is not on the radar of GPs or women, that receives no funding for research into treatments and cure. Unsurprisingly, diagnosis is typically at advanced stages and outcomes are poor.” – Fazi
In September of 2018, I had a sharp pain at the base of my ribs at the right side. After a couple of sleepless nights, the pain wasn’t getting better, and I was burping like crazy. I headed to the medical centre, where the locum diagnosed a broken rib.
It didn’t make sense. I hadn’t bumped into anything or hurt myself in any way, but apparently ribs could get broken when sleeping on your side, and a broken rib rubbing against the diaphragm causes burping.
Two weeks later, I was feeling much worse. The side pain had improved, but I was still burping, had abdominal pain, felt full, bloated and generally uncomfortable. My GP ordered standard tests – blood, urine, etc with occult blood as an additional; this was followed a few weeks later by an ultrasound to rule out kidney and gallbladder stones. Then, more than six weeks after the first appointment, an x-ray to check that the ribs were fine.
By December, the focus had changed to some sort of food allergy, possibly IBS. In the GP’s words, “the only thing left to do is a colonoscopy”. I was left wondering “what if the colonoscopy is clear?” It felt like she was washing her hands off me, like I was a hypochondriac.
The earliest colonoscopy appointments were for end February. I was uncomfortable on an ongoing basis but didn’t feel like going back to the GP would be of help. So, I went to a naturopath recommended by a colleague.
Armed with pills for my liver, spleen and gut, I was able to enjoy the holiday season with family from overseas. I had to be careful about what I ate as I still felt full quickly, and had abdominal discomfort, but overall, it was an improvement, and I felt like I had been heard.
When the pills ran out and the symptoms ramped up, I went back to the naturopath. This time, he diagnosed the kidney wasn’t functioning optimally. I took the pills but was a bit sceptical – the kidney had been fine.
My symptoms got worse. Reluctantly, I went back to the medical centre. My GP was away but the doctor I saw read the notes, looked at my face and said I shouldn’t have had to go through this for six months and said, “let’s get a pelvic ultrasound”. And within a week, I was at the hospital under the care of gynae-oncology. The weeks and months that followed were an emotional rollercoaster for us as a family.
Diagnosed Stage 4B – “stage 4 is terminal, isn’t it?”
Low grade – “that is good, grows slowly.”
Average life expectancy – “5-15 years, could be less than 1 or more than 20.”
Given the tumour spread, I would have a temp/perm ileostomy – a poo bag.
The six hour debulking surgery was a success.
My bladder went to sleep.
I had a smooth recovery.
Life was lived in 4 hour windows around the stoma and self-catheterizing.
Maintenance hormone therapy didn’t work. The ileostomy reversal was a success.
My tumours were growing faster than the norm for low-grade.
My bladder slowly returned to functioning.
I underwent chemotherapy.
There is so much learning along the way. The CDHB staff are exceptional – from the surgery team and oncologists to the nurses, aides and attendants; everyone is so kind and patient.
The human body is amazing. It bounces back after gruelling punishment – two complex surgeries and three months of chemo in a 12 month period – looking at me, you wouldn’t guess.
People matter more than anything in the world – family, friends, colleagues, neighbours, the LGSOC support group; everyone helped us stay afloat.
We are grateful to Fazi for sharing her experience with ovarian cancer and for helping us raise awareness. If you would like to share your story too, please get in touch.
OCFNZ started as Cure Our Ovarian Cancer in 2018, with a focus on low-grade serous ovarian cancer. In 2020, we expanded our focus to include all ovarian cancer and, in 2024, we changed our name to the Ovarian Cancer Foundation New Zealand.