The radiologist then asked me to get a CT scan, but I just thought it would be something to do with my thyroid, after having two kids. The lady that came in after doing the scan actually asked me, “Do you have a family history of ovarian cancer?” I didn’t—and I didn’t even think anything about it.
I rang my doctor for my results and they told me I needed to bring somebody in with me. I was thinking it was probably just to keep my kids entertained.
I went in and sat down and my doctor told me: “I’ve got some news. I’ve got the results and unfortunately, it looks like it’s ovarian cancer”. It all happened so quickly. I didn’t break down as such, I just went, “Okay we need to get this sorted”. They had already arranged who was the best surgeon to see and had a referral for me in Perth. It was kind of like ‘Go, go, go’.
My surgeon sat down with me and explained everything. He drew a picture on a piece of paper that showed where the tumour was and gave me some options. I turned around and said, “When can you get me into surgery?” I’d had two kids; my girls were two and four at the time. So, I looked him in the eye and told him: “Let’s book in for the full hysterectomy, I’ve finished having kids”.
The following Tuesday I was booked in for the surgery. I was probably the loudest person in the loading bay beforehand, laughing and smiling. That’s my personality, I was just trying to see the positive I guess, because you can’t change things.
I had the full laparotomy, cut from above the belly button right down to the pelvic bone. However, they found the ovarian cancer had spread through my abdomen, so there was no way of actually being able to remove anything besides my omentum— the layer of fatty tissue that you have underneath your skin on your belly—because the cancer loves to go to there.
Then it was decided to try chemotherapy to shrink the tumours and then potentially try and remove everything.
I started off with weekly chemo. I used to have long hair— I would always say to my hairdresser, “Just a trim”—but by around the middle of February it started falling out. I had family come over and we shaved it all off. I say to people who get diagnosed that the one thing you do have control of is when your hair starts to fall out, you can choose to shave it all off. It’s the most liberating thing I did. And you know what? I save so much time in the morning; I didn’t have to spend half an hour washing my hair and blow drying my hair and straightening it.
But with chemo, especially weekly, it can be really hard. I’ve had about five times where I’ve thought, ‘Why me? This isn’t fair,’ and have bawled my eyes out in the shower.
After 17 weeks of chemo, I had another operation—keyhole, to go in and have a look to see if the chemo had worked—but it hadn’t. The chemo was keeping the tumour stable but it hadn’t shrunk enough for them to go in and remove what was left. That was a worry to think I had gone through six months of chemo and that nothing really changed. I switched to another chemo drug, that was a little easier, my hair started to grow back and my CA-125—which is what they monitor for the ovarian cancer with your blood test— it actually started dropping.
I’ve had about five times where I’ve thought, ‘Why me? This isn’t fair,’ and have bawled my eyes out in the shower.
Telling my children
At the time, my eldest daughter was in kindy and my younger one was in daycare. My husband had to step in to do basically everything. I felt ill all the time, so that was definitely tough.
From the start, I explained to my kids that “Mummy isn’t well, mummy’s got a sore tummy”. They still know that I go to hospital and that I’ve got a port in my chest. But I don’t use the ‘cancer’ word because they wouldn’t understand and are still too young. Also, I don’t want them going to school and going, “My mum has cancer,” and then all their other classmates going home asking, “What’s cancer?”
We’ve had to rely on a lot of people to help us, heaps of people would make us dinners or pick up the girls. I was in hospital for three weeks back in October last year and it was over my youngest daughter’s fourth birthday. Someone organised a bouncy castle, someone organised balloons and someone organised cupcakes. It’s really good support-wise.
In January 2017, I had a tumour sample sent to America for Caris testing. They actually test your tumour to work out what chemo drug destroys the cancer cells, so it's really targeted to you. The results showed that the chemo I had done for the first 6 months was non-respondent to my tumour. Then, it gave me the chemo drugs that would be most effective to treat it. It cost $9500, so it’s not cheap, and it’s not covered by private health cover or Medicare. I personally believe that had I not had that Caris testing I would not be here today, hand on heart. I’m a huge advocate for it.
Since, I got my chemo changed, and it went down to once every four weeks, so I have a life back again. After about four months of being on this treatment, I had a PET-CT scan and it showed that there was actually a reduction of the tumour, and there were some spots on my liver which had disappeared. My CA-125 are now in the normal range too.
I don’t know when I’ll be finished with chemo, I don’t know if I’ll ever get off chemo—maybe if my liver and kidneys start to go a bit toxic from it. As my surgeon said, we’re treating it as a chronic disease basically, and the chemo will keep it stable, and if we can get it to shrink that’s great.
I personally believe that had I not had that Caris testing I would not be here today, hand on heart.
Last year was all about making memories with my kids. We did a lot of holidays: I went to Singapore, I went to Bali a few times, and we went down south. I even went back to the place I had the massages in Bali. A few people were like, “Wow you’re going to go back there?” and I was like, “Yeah, if I hadn’t gone to Bali and laid on my tummy for a massage I might not even be here".
Advice to others
You know if there’s something not right. One of my main symptoms was a real discomfort in my stomach and bloating. I never put two and two together, but I was looking like I was six or seven months pregnant when I went in to get tested. I was very lucky that my doctor looked at my stomach, sent me for an ultrasound and for a CT. I didn’t get fobbed off, but I know a lot of people do.
Also, you’ve got to think about the positive side, you’ve got to think that you’ll be here for your kids. Some people say I’m crazy that I’m so positive. But I always say, “You’ve got a choice”. You either embrace life and what it throws at you and you make lemonade, or you sit and wallow your life away.
You can read regular updates about Jessica’s journey at Ovarian Cancer Mum of 2.
For more information about the signs and risk factors visit www.ovariancancer.net.au. You can also show your support by purchasing a teal ribbon on Teal Ribbon Day on Wednesday, February 28.