"When people ask ‘did I have symptoms?’ I can honestly say that I did not notice a big change in my body. They were so gradual that I thought everything could be put down to another factor of my life. Looking back, now that I know the signs, yes there were changes but Ovarian Cancer is so subtle and sneaky. I was bloated, nauseous and didn’t feel well in the few months before diagnosis, but I just put that down to the possibility of being pregnant.
In the same weekend of Melbourne’s July 2020 lockdown, I had such severe pains in my side that we rushed into emergency in the middle of the night. Because of Covid restrictions, Stew (my husband) was not allowed to help me into hospital or visit me more than a handful of times in the following nightmarish two weeks. We are still so traumatised from this experience.
After 8 hours I was taken into emergency surgery with a suspected ectopic pregnancy or ovarian torsion because of the level of pain I had. A 2-hour keyhole surgery became a 6-hour open exploratory surgery.
I woke with a colostomy bag and a stapled scar from my abdomen to my pelvis. I knew something was wrong. The doctors and Stew explained what ‘malignancy’ meant and I soon learnt I had a mass the size of a golf-ball removed from my upper abdomen.
In the days that ensued and after many tests, I soon learnt that I had stage 3c low grade serous ovarian cancer. Stage 3c means it had spread beyond my ovaries, uterus, pelvis and into my abdomen. The pain I was feeling was from one of the secondary growths. The various specialist doctors and surgeons that were called in for this surgery absolutely saved my life.
With Melbourne going into lockdown for the foreseeable future, meaning months of isolation for Stew and I, my parents received exemptions to travel down from North East Victoria to move in with us. They helped with cooking and cleaning, and provided a bit of a distraction over the first few uncertain months. Stew’s sister was also with us for the initial weeks, supporting Stew as I lay in hospital and he fought tooth-and-nail to see me. She helped to “make some noise” around our home is what he’d say, and provided an important distraction as we began our grieving process that accompanies a cancer diagnosis and loss of fertility.
We had almost every person I had ever met in my life send messages, food, well wishes and support which was overwhelming and beautiful. We are grateful to have those people in our lives.
After some healing from surgery, I immediately began four rounds of chemotherapy followed by an additional two after another surgery. There is a way of keeping some of your hair whilst doing chemotherapy, but I wasn’t interested in trying. I had enough pain to deal with. So I decided to make a fundraiser with OCA and make the head shaving day a fun event (as much as it can be). Something good had to come from something so bad and cutting your hair is something I could control. I felt like my body had failed me and I had no control over my own life. Stew shaved his head too because we are in this together. My sisters, brother in laws and gorgeous nephews cheered us on with love over distance-defying technology of Zoom. I posted photos to the fundraiser and set a goal of $5,000. Within 48 hours I had reached $15,000 and over the next few months raised an enormous $20,000!
The money from fundraising like this provides OCA with many invaluable resources, both for raising awareness about ovarian cancer and the much needed support for those who have been diagnosed. OCA has brought me the amazing teal support nurse Fiona and counsellor Hayley. We chat weekly and OCA run numerous support groups including the young women’s support group and partner’s support group. Most people who get ovarian cancer are over 50 so meeting with other young women is important. No-one expects to go through menopause and infertility at 32 so talking to others with similar experiences is important.
My second surgery is what’s called a ‘debulking’ surgery, for me this involved a radical hysterectomy, two bowel resections and anything with signs of diseased tissue removed. This one took longer to complete than the last one. My colostomy became an ileostomy, positioned on the other side of my abdomen, and my scar became much larger. I lost 20% of my body weight over this time because of the limited eating after surgery and with an ileostomy it is an absolute battle to maintain weight. Eating continues to be difficult.
I felt empty physically, emotionally, and mentally. On top of a diagnosis of an incurable malignancy, I am now having to cope with the loss of being able to carry a child. After actively trying for children over almost 18 months leading up to my diagnosis, this is an overwhelming trauma that is present in my life every day.
Most people that have ovarian cancer need a version of this debulking surgery because wherever the disease is it must be cut out. Depending on the type of cancer chemotherapy is not always as effective. In the case of low-grade ovarian cancer, chemo is hardly effective at all because it grows slower than if it were high grade. There are many different types of ovarian cancers. The gruelling 6 rounds of chemo combined with a debulking after the first 3-4 rounds is the first line of treatment.
I started going to an oncology exercise physiology class to help build and maintain the strength that I lost from chemo and surgery. It has been the best thing for my recovery and to make new friends that have had similar experiences. I also returned to work as soon as I could although in a part time role. I am a teacher and my students bring joy to my life. It is important to have other focuses outside of cancer. Worrying about every ache and pain thinking it is more cancer or another side effect really gets you down but my doctors are only a phone call or text away.
Healing is not a linear process. There have been many unexpected challenges along the way but I have been blown away by the tremendous support I have received from my family and friends. Many have expressed the worry that they will say something wrong. We have been through so much trauma and grief, there will be things said that hurt us but the worst thing anyone can do is not say anything, to ignore the elephant in the room. That is the advice I give anyone who is wanting to support someone with cancer.
There will always be days when I need to retreat into my isolated safe zone with Stew and my precious dogs, power down and mourn what we have lost. What is most healing though is to have gratitude for what I still have. Surrogacy may be our only way forward in building our family, but I am still here and I will remain optimistically defiant in the face of what is to come.
I have met the most amazing people on my ever growing medical and support teams who do work miracles. We are so lucky to live in Melbourne with our state-of-the-art facilities, research, and experienced medical staff. Most of all, I have received overwhelming kindness and love from those who surround me in my life."