I was diagnosed with stage III bowel cancer at the end of 2014 at age 28. I’m a primary school teacher and at the time had just started a new job at an amazing school in Melbourne.
For months before I was diagnosed, I had really painful cramps and was severely constipated for a while and twice ended up at emergency in hospital. By the second emergency department visit I was vomiting and could hardly eat. I was in a lot of pain so they said I should get a colonoscopy. That colonoscopy was how my tumour was found.
My husband Jamie was with me at the doctor’s appointment when I found out. I remember just bursting into tears and the feelings of disbelief. You go through stages of crying, feelings of fear and weirdly almost wanting to laugh with the feeling of “Is this real? Is this really happening to me? Did I not eat the right food?” At the time, I was a healthy, active 28-year-old.
Following my diagnosis, I had a sub-total colectomy (an operation to remove part of the colon), followed by six months of chemotherapy.
Chemotherapy takes a toll in many ways, mentally and physically. Chemo brain is a real thing! You get forgetful and a bit fuzzy. My hair thinned, but the drugs I was on thankfully do not cause full hair loss. The nausea isn’t great.
In late 2015, I was diagnosed with Stage IV or secondary bowel cancer, and had another major operation, with part of my liver removed, both ovaries removed and a lot of clearing of tumours in my peritoneum. I also had HIPEC (heated intra-peritoneal chemotherapy) during this operation.
Our wedding date was set 21 days after the operation, but Jamie and I decided not to postpone, as we had been planning it for over a year. So despite many worried family and friends telling us to hold off, we got married on New Year’s Eve in 2015. The wedding was on my family’s farm in NSW, so that was really special.
It was pretty funny because most brides stress about their dresses and putting on weight, whereas I had lost weight because of the operation and my dress didn’t actually fit properly at the back.
I was on painkillers and I had a wound all the way from my chest down to below my undie line. But I could walk—walking down the aisle with my dad was amazing.
Jamie and I walked into our wedding reception to Pharrell Williams’ song “Happy!” That one was my choice.
We are so glad we followed our hearts, especially seeing as I had to have another six months of chemo at the start of 2016, and all that has followed since. It was a great lesson to us to live in the moment.
We had always assumed that we would have children at some stage, but we hadn’t planned on having children in the time before we were married.
Before my chemotherapy, the doctor recommended that I harvest my eggs because chemotherapy can affect your fertility. Luckily, there was a window after my first operation before I started chemotherapy, so I do have eggs that are frozen.
Sadly, after my second operation, both of my ovaries were removed. I can’t have children naturally now, but I can still carry a child, so IVF is a possibility for us. Surrogacy is also an option, but at the moment, I’m just trying to find a treatment that will control my cancer.
I try now to work really hard on my mindset, diet, exercise and seeing the good in everything. I really focus moving daily, as well as taking supplements and getting acupuncture to support my immune system.
Being diagnosed with cancer and going through operations and treatment really changes the way you look at life and how you live your life.
I went through a stage, probably about three years ago, where I really did get anxious and depressed. Questions like “Why do I have cancer?” and “How do I deal with it?” You have to put time into working through things and creating a strong mindset to be able to cope.
Sometimes you feel really isolated during cancer treatment, like no one around you can fully understand. Sometimes I feel like I have to put on a front when around others and at times you just have to act like none of this is happening, which can be really draining. I’m really lucky to be supported by my family and friends, who are always there for me.
We moved from Melbourne two and a half years ago to a small farm near Birregurra. We have chooks, three pet goats, and run a small mob of beef cattle. We also have a Golden Labrador called Margaret. We are totally besotted with her!
Sadly, my secondaries returned in 2016, in my liver and lungs. I was on a clinical trial at the start of 2017 which unfortunately was unsuccessful, so I went back onto chemotherapy to try to keep my cancer under control. This worked for a time, but since then, I have tried all the mainline colorectal chemotherapies, as well as an immunotherapy drug, and an internal radiation treatment called SIRT. The disease continues to grow and spread in my body. We are hoping a new trial will become available soon that I can participate in, as the doctors are not able to offer me any more treatment at this stage.
Knowing there is no cure at this stage for my cancer is really hard. That’s why we’ve started a little fundraiser group called ‘Research4Riney’. Riney is one of my nicknames. We want to help organisations such as the Jodi Lee Foundation to raise much needed awareness about bowel cancer, and also raise funds towards the vital research towards new treatments, and hopefully one day, a cure.
I think an important message to take away for anyone is that anybody can get cancer, even if you are young and otherwise healthy.
I think lifestyle and diet play an important role. I love the saying “positive mind, positive vibes, positive life”.
Eating less meat, especially processed meat is important, as well as including a lot more veggies, especially leafy greens—eat the rainbow! Stress is a really dangerous thing, which can affect your health in many ways.
You don’t think when you’re 28 that you’re going to get cancer, but at the end of the day you only have one body and that’s been a really important lesson for me.
In January 2019 Riney lost her battle with bowel cancer. She was a part of our family here at the Jodi Lee Foundation and is greatly missed. Her fundraising campaign, Research4Riney, has raised over $250,000 for bowel cancer research. ‘Riney’ helped spread awareness of bowel cancer, and her dedication and commitment has saved lives.
Catherine Ross and her Research4Riney team have been incredible supporters of the Jodi Lee Foundation. In September 2017 they entered a team for The JLF Trek VIC and raised an incredible $37,938. Then in April 2018 they held the Research4Riney Gala Dinner where they raised a whopping $143,045 that was divided between us, Bowel Cancer Australia and Peter MacCallum Cancer Foundation. In September 2018 the Research4Riney team raised $42,186 whilst participating in the JLF Trek VIC.