“My future is uncertain. I can be sure this cancer will end my life though I am unsure when – if I have just months or longer to live. For me, this means I live each day as it comes.” – Jane
In March 2020, at age 58, Jane started having stomach pain, and she received treatment for a range of possible problems, including constipation and diverticulitis. By early September 2020, she had a swollen stomach despite not being able to eat and was in severe pain, requiring urgent attention.
I had an ultrasound on September 3, 2020. The radiographer was very serious throughout this procedure and at the end, she said that I have fluid in my abdomen, indicating a serious health issue that needed further investigation. I was devastated.
Over the next few days, my stomach got tighter and more painful as it filled more with fluid. My ex-partner and dear friend came straight down for the weekend once I told him of the seriousness of my illness. Overnight on Saturday, the pain was unbearable, and at 6.00 am on Sunday, I went to Accident and Emergency. There was no way I could wait any longer, and this course of action had been suggested to me if in an extreme situation over the weekend.
Once at A&E, things moved quickly. Within a couple of hours, I had a CT scan of my chest, abdomen and pelvic area and a house officer and registrar told me I had probable advanced ovarian cancer with a large volume of ascites in the abdominal cavity. I was so shocked and a bit numb throughout that day.
My knowledge of ovarian cancer was minimal, and I had certainly never considered it a possibility in my life. I got admitted to the hospital about midday, and a drain was put into my lower abdomen in the early afternoon under ultrasound. They drained off 3.8 litres of fluid from my abdomen, which was such a relief. The hospital dinner that night was the best meal I had eaten in a long time. It was great to feel hungry!
My daughter, son and his partner returned from Australia over the next few weeks to be closeby. I was linked up with the fast-track cancer treatment program the next day, met the liaison nurse and had a tissue biopsy later that week under a CT scan. I was diagnosed with high-grade serous carcinoma, with no real mass and uncertainty of whether it was of ovarian or peritoneal origin. My case was discussed at the MDT meeting later that week, and the doctors decided I would have three cycles of chemotherapy and then, if I responded well, I would have debulking surgery.
My chemo was to start on September 31st, so I had to get through that period of waiting. I had great support during this time and lots of visitors. I stopped work and haven’t returned since. Life felt very precarious – with uncertainty about how long I had to live. The cancer isn’t curable, but treatments do prolong life – for how long, I don’t know.
During that month, I was admitted to the hospital twice more – once for a further abdominal drain and secondly, after a week of constipation and vomiting, when a partial bowel blockage was suspected. This was cleared with having a clear liquid diet for a few days and laxatives. I felt incredibly despondent and out of control during this period.
There have been lots of clinical staff involved in my care, most of whom have been kind and compassionate. Since I began treatment, my oncologist, nurses and surgeon have been straight-talking, skilled and knowledgeable.
During the first three cycles of chemo, I felt strong and more ‘healthy’ than I had for months. I didn’t experience many side effects and became really hopeful that the surgery would be successful and give me more time. My CA125 went from 1500 to 315 after the first two cycles. I was responding well to chemo. I had a further CT scan, then following an MDT meeting, I got referred to have debulking surgery at Auckland Hospital. The surgery took place on December 8, 2020.
Unfortunately, it was not successful. My disease had spread like sand throughout my abdomen, on most of my organs, including growing on both ends of my stomach and in the blood supply to my bowel and liver.
The surgeon and team opened me up, did a thorough examination, and then, after consulting with another surgeon, decided to staple me up again. The distribution of the cancer meant the removal of affected organs would be too extensive. They felt such invasive surgery could be life-threatening, may not have left me with much quality of life and would not have removed all the cancer; this was such a disappointment. I had held high expectations of surgery and felt an immense sense of hopelessness and sadness during the days following. Any chance of living cancer-free, even for a while, was gone.
I did recover well from the surgery, was up and about feeling stronger within a couple of days, more positive and checking out when I could start more chemotherapy. I also found a kindred spirit who has shared a very similar experience to mine and who I hope to have a continued friendship with.
Since then, I have had a lovely Christmas and New Year holiday period with family and friends. I have had a fourth cycle of chemotherapy and had good and bad days with lots of digestive issues. Chemo has a stronger impact on me with each cycle having increased side effects.
I have also made contact with a private cancer centre and have been exploring unfunded drugs. While I have no insurance, I have drawn down my Kiwisaver and have family members who research thoroughly and are committed to trying to raise funds for meds that could extend my life as much as possible. I am developing a bucket list and hoping to head off to the South Island for a trip in March.
Postscript from Jane’s daughter, Ella.
“Sadly, Mum passed away on May 18, 2021. She deteriorated quickly over the last few weeks. But she was so amazing right through all of it, as tragic as the circumstances were. I know Mum would be happy for her story to be shared. It was really important to her to help the cause as much as she could, which is why she met in person with MP Jan Tinetti and shared her story with the government as part of Cure Our Ovarian Cancer NZ’s advocacy.”
We are grateful to Jane and her family 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.