Hello, my name is Rob I live in Cairns, North QLD. I am 44 years of age I have stage 4 rectal cancer I do triathlons running and all things health and fitness. My journey started in July of 2020.

I presented myself to my GP because I had blood in my poo at the time my GP was going to treat me for haemorrhoids if it wasn't for my partner who works in the medical industry, and she insisted that I get a colonoscopy. We paid for the colonoscopy ourselves, two weeks later after having the scope we were pulled into a room and told that I had rectal cancer.

In a split second our world came crashing down on top of me…. to be honest, I can’t really remember much of the conversation after the doctor said the word “Cancer”!!

All the sudden, I found myself getting past from pillar to post getting MRI, CT scans, blood tests and all sorts of things that were just so foreign to me!! The whole-time time I kept thinking this was a mistake or some crazy dream!! I’m fit, healthy and strong!! For God sakes it was only 10 months before I proposed to my partner at the finish line after completing an Ironman!!

After the most agonising week that was filled with darkness and disbelief, we were called in to have a meeting with the doctor to be told that at that point the cancer was only very local in the rectum along with a couple of Lymph nodes and that I would start radiotherapy.

It’s crazy, but the relief we felt that it had not spread anywhere else was amazing. So, away I went to the cancer clinic, got my 3 tattoo dots, and prepared myself for 6 weeks of radiation and oral chemotherapy.

Radiation wasn’t too bad apart from it felt like my rectum was nuked and it looked like the surface of the sun!! Doing number 2s was not fun……!!                 

After 6 weeks of radiation, I was ready for surgery!! I was rescanned and then pulled into the Cairns Hospital again where we were told (by a very junior doctor) that the cancer had spread to my liver and there was no hope for survival!! And this was before my case was presented to the Multi-Disciplinary Team!!

Once again, we were thrown into a world of darkness and disbelief! There is a lot more to this shit show, but I won’t go into it at this stage!!

At last, my case was presented to the Multi-Disciplinary Team. I was now under the care of an Oncologist and a great Cancer Coordinator. I have 3 small cancer spots in my liver, not operable at the time and I would need to go onto Chemo. So, PICC line in and away I went to get my first dose of Folfoxiri along with a “Babies” bottle that would be my friend for 48 hours……

Then two weeks later I would do the same thing again! I walk into the cancer clinic (a man) where the lovely ladies would fill me up with “Magic” Poison and then 6 hours later I would walk out like a “shell” of a man!

Six rounds I would do along with a few mistakes due to the misreading of my scans and bad communications between the people looking after my treatment.

I remember saying to the head of the Oncology Department in a serious meeting, “I’m not a cat. I don’t have nine lives. Please can we get this right! I will do everything I can to be the perfect patient as long as you do everything you can. My life is in your hands and my life matters to me, my wife-to-be and my family!!”

Finally, they did get it right. The chemo did a good job and put us in a situation where we could go to Townsville to get half my liver chopped out!! I need to say that my liver surgeon and the surgical team where fantastic and made me feel at ease with what would be a very large operation!!

And boy I felt it for the next 10 days or so…. Felt like Mohamed Ali did 12 rounds on me!!  I felt every bump on the road during the 5-hour drive back home. Karen, my wife-to-be, at the helm!

I’m now 8 weeks post liver surgery and 1 round back into chemotherapy. This time I requested and pushed to have a Porta-Cath put in so I can now do swimming, running, bike riding and just try and lead a little bit more of a normal life!

I am slowly learning that I need to show some attitude if I’m to beat this bloody thing!!

My advice to other people that find themselves facing this sneaky disease is

  • Ask lots of questions, no question is stupid!
  • Try not to Google the statistics – There is no statistic for you!
  • Always keep your foot on the accelerator with your healthcare team – it’s your life and no one else will care for it as much as you
  • Try to eat well
  • Exercise both your body and your brain
  • Try to lead a life that is normal – Cancer takes up much of our time
  • Do lots of swearing – on your own or with a good friend
  • Let friends, family and co-workers help – That’s what they want to do

I’m very passionate about bowel cancer and the impact that it has on people’s lives and the wider community. It’s unacceptable that so many young people are getting sick with this disease, and I feel the government needs to help with the push to educate and fund our cause.

Thank you for reading my story

Rob Johnstone

PS Check out my Facebook page – Arm Pump Crew