I Live each day as it comes

Jane is a 58 year old Pakeha woman and a much loved mum to her two adult children, in their late 20s. In March 2020, she started to get stomach pain, was treated for a range of possible problems including constipation, and diverticulitis, but by early September 2020, she had a swollen stomach despite not being able to eat, and was in serious pain, requiring urgent attention. This is her cancer story. 

“I had an ultrasound on the 3rd of September 2020. The radiographer was very serious throughout this procedure. At the end she said that I have fluid in my abdomen, indicating a very serious health issue that needs 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 the Saturday the pain was unbearable and at 6.00am on Sunday morning I went over 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 was admitted to hospital about midday and a drain was put into my lower abdomen 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 and son and his partner all returned from Australia over the next few weeks to be close-by. I was linked up with the fast track cancer treatment programmed next day, met the liaison nurse and had a tissue biopsy later that week under CT scan. I was diagnosed with High Grade Serous Carcinoma, with no real mass and uncertainty whether ovarian or peritoneal origin. My information was discussed at the MDT meeting later that week and it was decided that I would have three cycles of chemotherapy and then if enough response would have debulking surgery.

My chemo was to start on the 31st September 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 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 stronger 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 was referred to have debulking surgery at Auckland Hospital. Surgery took place on the 8th of December 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 the blood supply to my bowel and liver.

The surgeon and team opened me up, did a thorough examination, then after consulting with another surgeon decided to staple me up again. The distribution of the cancer meant 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, 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, 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 the 18th of May 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 government as part of Cure Our Ovarian Cancer NZ’s advocacy.”