After completing my chemo in January in 2021, my doctors located a reccurrence after only 2 months, in the following months I was on different maintenance medications in an attempt to stabilise it. Sadly these medications did little to hold off the cancer and it kept growing. The ‘low-grade’ aspect of my Ovarian Cancer means it grows slowly as it is not too different from normal cells, and therefore hard to find effective targeted medication.
About mid-2021 I was put in contact with an amazing specialist and academic from Peter Mac with the aim to access targeted treatment through a clinical trial that she is involved in. There was another trial she recommended that’s suitable for my type of cancer, based out of the USA.
Going into the clinical trial world was probably the biggest learning for us over 2021, how challenging, brutal and emotionally taxing access to any clinical trial is, particularly these early phase trials. Trials are extremely selective and accessing them is usually resorted to when the standard treatments are not working or not expected to work. Access to these is not guaranteed either. In my case to qualify for these two trials I firstly needed to do a biopsy, then successfully run whole-genome sequencing, and lastly show my cancer qualified based on the findings. Going through this process whilst getting sicker can very mentally challenging.
The initial plan was to do a keyhole surgery for the biopsy, a minimal invasive surgery with a relatively easy recovery time. Well, it’s never the easy case with my cancer, and so with no clear sites shown on the CT scan, and with my ca125 blood test (the cancer marker I now evidently live by) rapidly rising, the team made the call to do an open exploratory surgery to find a suitable site, rather than wait. This was going to be my third abdominal surgery through the same scar. The surgery ended up being was much shorter because fortunately, and unfortunately, finding a suitable site wasn’t difficult. Needless to say it was traumatic to go back into surgery again.
It’s the familiar faces of my amazing doctors and nurses that helped me. Stew being there too, always to there to hold my hand – he’s an amazing guy. Familiarity is a powerful thing in the hospital setting.
Around week 6 after my surgery, we got word my sequencing was successful for the Peter Mac trial, and they were processing the results (a massive tick). Through this sequencing they also identified why chemotherapy wasn’t effective for my cancer. My oncologist explained the cancer cells annoyingly just spit the chemo back out, which isn’t terribly helpful. We were told chemotherapy would be a last resort.
The intention over this time was to move onto one of the two trial treatments as soon as possible and given I couldn’t start a trial with another treatment in my body, I needed to be off all medication. The waiting for the testing took longer than expected and I became much sicker and my abdomen more distended (bloated and painful).
At week 8 we saw my oncologist who gave us the devastating news that the sequencing on one trial was unsuccessful and I would not qualify for either trial. The sequencing was successful but the mutations they were looking for weren’t there. I put my head in my hands and just cried in that room and Stew did too. I was getting a lot worse, Chemotherapy wasn’t a real option and I had no real treatment plan.
Within the week that followed, days leading up to Christmas, I went into emergency again with a blockage. It is hard to describe blockages, the pain is so intense you almost pass out. I could not stop throwing up so a tube was put down my nose to my stomach. It took 3 attempts to get it in with a smaller tube finally used. This is possibly one of my most traumatic memories.
They did a CT on my abdomen and they found this blockage was different. Most blockages are around my ileostomy which is fairly common but this one was under my stomach, and not in a good place. Our surgeon told us he couldn’t help us this time.
Over the first 2 days my nose tube was pretty active. Given the blockage, I couldn’t get liquid or any sustenance from my stomach to my small intestine. At one point it was suggested I might need to go on a permanent TPN which would be feeding me through an IV. Horrific news which was a new low for me.
My oncologist was working on getting me onto a different chemotherapy and hopefully in combination with a type of immunotherapy. The plan was if I could not pass anything then it would be TPN and weekly chemotherapy at the hospital of my oncologist. Fortunately on day 3, after a strong dose of steroids to try to suppress any inflammation, I was able to pass some liquid from my stomach to my small intestine with the nose tube out. Two days later I was able to go home and start chemotherapy combination treatment which was two days before Christmas.
Over the following 2 weeks, Stew and I had Christmas at home (COVID safe), my beautiful niece Penelope was born and I had the blessing of being the maid of honour at the wedding of one of my best friends. My specialist at Peter Mac (who spoke to us numerous times over the Christmas holiday period) also offered to stay on to help me find treatments, even when access to her own trial wasn’t a possibility for me. I am grateful for how amazing my team are.My very smart and generous sister donated Penelope’s cord blood for possible future treatments for me. We’d been planning this with the Peter Mac specialist for a month or so, as a ‘what if’ we could find something. Even though Penelope came a little earlier than expected and it being on the public holiday after New Year’s Day, the amazing specialist from Peter Mac and my sister’s obstetrician worked unbelievably hard to get everything organised. It was a crazy 24 hours of the doctors calling whoever in their network to get what was needed, extract the cord blood in the right way at the right time, and transport it to a suitable location. All while my sister was in labour. We are beyond grateful to have these people in our lives.
Over the next 12 weeks, between the next 5 rounds of chemo, I had another surgery to put a port in since my veins were getting harder and harder to access. I was nervous about having another surgery, even if minor, to get the port but it has been the best thing I have done. It is a little lump under my skin on my chest that leads into a vein. I can now get all blood tests, CT scans and chemo through my port without any feeling. It is not what I thought it would be and I am grateful for this amazing device.
The combination treatment actually worked better than we were expecting. My ca125 was dropping and my stomach was softening and becoming less distended. Yes!
Everyone gets slightly different side-effects to treatments and no two treatments are alike. I didn't lose my hair this time but my skin started to welt and crack on my hands, elbows and feet. This can be managed but it is challenging given the combination of the two drugs meaning one caused this, and the other stopped any open wounds from healing. My elbows and hands got pretty bad towards the end of the treatment and once the treatment ended I had to take a month off any treatment to allow everything to heal. My husband Stew had to redress my elbows twice a day over this time. But we managed and were supported by our oncologist and oncology nurses. We were actually able to get away for a family holiday to northern NSW to celebrate my grandma's 91st birthday. Amazing!
I am now on the same immunotherapy drug in combination with another. This means I go in for infusions (like I did with chemotherapy) once every 3 weeks and I take medication every day but the side effects are much less intense. I’m effectively stable for now which has given Stew and I some much needed reprieve over the last 4 months. I have also been able to go back to work 3-4 days a week which is very important to me. I love my job and it gives me stability and allows me to remember what my core values are.
And finally, in April this year I got onto that trial at Peter Mac. I have very passionate dedicated doctors in my corner, and through many emails, and board reviews, and whatever else we never see, I qualified for that clinical trial. Through my specialist from Peter Mac and my oncologist and many other unmentioned and unseen super amazing people, the study was expanded to include a very rare mutation found in my cancer that is of a similar pathway to the other 16 they were looking for. This can only be made possible by the persistence of these very curious and dedicated minds. I will start on that trial when my regular CT scan shows the current immunotherapy is slowing or not working, showing a certain amount of tumour growth. With the right monitoring, I should only go a little backwards to get better again.
COVID did catch me eventually but having antiviral medication meant it was more of a bad flu which kept me very tired for a few weeks. I am always up and down with energy and I have to be very careful with what I eat because of my stoma but am generally doing really well.
I have continued to do more fundraising and Stew and I have recently started training to speak to people studying to be medical professionals about our experiences. As Stew and I have said from day 3 post diagnosis, we’ve got to great some good from this and take the cancer’s power away.
To top this off and somewhat saving the best for last - Stew and I have an amazing, generous surrogate in Canada and will hopefully have a little miracle coming soon. Over the last 12 months we’ve been nothing but persistent in creating embryos and finding - now found - our special someone to carry our little miracle. Amazing people are in all corners of this globe. In the complete uncontrolled chaos we’ve been through, this surrogacy journey gives us an outlook and keeps me and Stew going mentally.
Over this time, since the early days of my cancer journey, OCA has provided me with my amazing nurse Fiona to keep on top of my signs and symptoms. We speak every 2 weeks, and she sometimes communicates with my oncologist to ensure important information is passed along. Also, my councillor Hayley continues to provide me with the tools to cope with the trauma from ovarian cancer, particularly diagnosis as a young woman. It’s hard to weigh up what’s worse sometimes, a terminal illness or my loss of fertility at a time of trying for a family but OCA has helped me navigate through this pain and maintain my optimism, purpose and joy for life.
"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."