July 23, 2024

By Jodi Lee Foundation

I had a few symptoms for several months to begin with. Early 2019 I noticed a change in my bowel movements. I found it was mostly during the early hours of the morning when I was trying to sleep. Terrible diarrhea that would some nights be awfully painful. I put it down to my diet as I had been told I had diverticulitis. So I decided to become vegan.

After a few months I felt ok. Tired. but ok. I had a lot going on in my personal life and I put it down to stress. Months went by and my girlfriend, Ange, noticed I had lost quite a bit of weight, fairly quickly, but again I put it down to stress and my new healthy eating regime.

But then the diarrhea came back, and was worse. The pain was horrendous some evenings and I was really struggling to sleep. Then one night in the early hours again, I noticed I had blood in my stool. I was quite scared and immediately went to my doctor asking for a colonoscopy, however I was told I had a hernia and that it would fix itself.

After a few weeks I noticed it wasn’t improving and the blood was more frequent. I decided to see a different doctor. That doctor saved my life. It was now near the end of January 2020 and he told me it was critical to get a colonoscopy. I was booked in for the colonoscopy on 4 February 2020 (also my dad‘s birthday — and ironically World Cancer Day). That was the day I was diagnosed with Stage 3 bowel cancer — at the age of 40.

What I thought would be a fairly straightforward colonoscopy turned into one of the worst days of my life. I underwent bowel resection, following on with six months of intense chemo.

At the beginning of 2021 I found out that the bowel cancer had metastasized to my lung. So in March 2021 I had lung surgery. Now with Stage 4 bowel cancer I was unsure what my future held. The next step for me was combined radiation and chemotherapy as I had more cancer in my pelvis. I had a two-week break and then followed up with sabre radiation to my lung. The treatment was relentless the side effects were nothing short of hell.

In November 2022 I also had my spleen removed as the cancer had metastasised there also. Another scar on my body, but another constant reminder to keep fighting this cancer.

I then went back to my surgeon for what I thought would be an appointment to discuss further treatment in my pelvis area, dependent on the spot on my lung. Never in my wildest dreams did I think we would be having the discussion that we had. The surgeon told me that there was no evidence of cancer in my body anywhere. There were no words to express my relief. My sister caught me in her arms as I fell to the ground with tears of joy.

I was in the clear for almost 10 months, but in October 2023 I experienced pain in my pelvis area again, so I took myself back to hospital. They found a spot on my ovary but it was so small they didn‘t know what it was, so they sent me home. Two months later I was back in the hospital again with crippling pain. I couldn’t go to the toilet and they found my kidneys weren’t draining properly. The small spot on my ovary had grown quite large and spread to the other ovary.

My surgeon suggested a total pelvic exenteration surgery which was previously a surgery only available interstate but was now possible in Adelaide. He booked me in for this surgery on the 8th April 2024. I personally wasn‘t sure if I was going to go ahead with the surgery as it removes everything in the pelvis, so it is a huge life-changing decision to make. Not only is it a 13 hour surgery but you spend 4 weeks in hospital afterwards recovering and learning to walk, sit, stand etc all over again.

But the decision ended up being taken away from me. I was admitted to Flinders Hospital in horrible pain and was quickly transferred to the Royal Adelaide Hospital where the surgeon told me I either have the surgery or end up in palliative chemotherapy. As you can imagine, I had the surgery shortly after that.

I managed to find another lady online after doing some Googling who had the same surgery as me — she was honestly a godsend, and I don‘t know if I could have got through it all without her. Just having that person to speak to who had been through it all and come out the other side really helped me.

I‘ve also had a great support network around me to keep me strong, which has been so important.

I’m on my recovery journey now, trying to slowly get back to normal life whilst still learning to do basic human things like walking and sitting. I‘ve got a 2 in 1 double-barrel colostomy bag and I have to admit the first time going to the toilet in the bag was actually a huge relief — no pain, no blood, just a normal looking poo. For the past two years I‘ve been buckled over in pain whenever going to the bathroom, still having blood in my stool, knowing this was not right and not normal.

I‘m now on a mission to not only share my bowel cancer story but also share a positive story about the pelvic surgery and the fact this is now available in Adelaide.

I urge everyone to get their symptoms checked out – you know what is right for your body or when something is not normal.

And please do a bowel screening test, it just might save your life.