My name is Jonathan (Jono) and this is my story.
After a month or so of constant fatigue, loss of weight and signs of anaemia (to which I chalked up to the day-to-day stress of work and life). I booked in a GP consult to which a blood test and physical were performed. I had mentioned in the consult that about 6 to 8 months leading up to this that every so often I would see bright red blood on the toilet paper after a bowel movement. But had noticed that it would only be seen after weekends of over self-indulgence at the pub, or at times of stress. I also mentioned that I would feel faint after strenuous activity and none so more than a surf, where I almost passed out once I had left the water. Which was the final straw to book the appointment.
Later that night I would receive a phone call from the GP telling me that I needed to go to emergency right away as my haemoglobin and iron levels were that low that she was amazed that I was able to do anything.
Once at the hospital, I was admitted straight away and would have both Iron and blood transfusions run simultaneously until I was able to be taken to have a MRI, CT and X-Ray which my diligent GP had recommended prior to my admission to emergency.
I was to spend the next three days in hospital while we waited for the results of all the scans.
Once they had been completed, I was told that a further investigation was to be made as they have possibly found something very sinister. A colonoscopy and gastroendoscopy was the next course of action.
Still groggy from the exams, I was awoken to be told the news that absolutely crushed my world.
On the 22nd of January 2021, I was diagnosed with Stage IV advanced bowel cancer with metastases to my liver and lymph nodes. Life expectancy, 2 months.
The next day I would be introduced to my oncologist along with her team, and we would run through what would be the next course of action. I would be told that we would need to act swiftly due to the advanced stage that I was in. Chemotherapy was the first approach to the uphill battle we faced, and then we would see where we were at after. Trial and error was to be the name of the game. Throw everything we have at it and then see what happens. I was to receive Folfoxiri + Panitumumab for the next few months followed by my first round of scans.
Still numb from learning about my situation, I flew naive and blindly into chemotherapy. I had no idea just how brutal and hard it would be.
Once my first four sessions were completed, my first of many CT scans were to determine how my body reacted to the treatment. An anxious wait for results would now set precedence for the "scanxiety" I would later feel leading up to every future scan and wait to follow.
My scan results came back and it was found that my body reacted excellently to the chemotherapy and if I continued on this path that I would be eligible for surgery, which was previously off the table. I continued to show amazing results and was eventually booked in for my first surgery to remove 3/4's of my liver.
Fast forward to today, three major surgeries (close to 30hrs in the operating theatre) including a trip to ED for emergency bowel surgery. Countless chemotherapy, radiation, PET scans, CT scans, blood tests, two new recurrences, and I'm still here. A long way beyond my first diagnosis, complete with an ileostomy who goes by the name of Stavros.
Unfortunately, due to scans late September 2023, I now find myself incurable.
In light of all of this negativity, I was able to marry the one who has been my rock throughout all of this in November 2023. A bit of positivity which will help me fight through what’s to come.
I'm currently back on Folfoxiri + Cetuximab to prolong the inevitable. But with the help of my amazing wife, family, friends, and medical team, I'll give it everything I've got.
My one piece of advice for others:
No matter what the symptoms, serious or not, how embarrassed you may be, or how it may be a slight inconvenience. If you don’t feel right, go to your GP and get checked out. Start a dialog with your closest people and buck the stigma of being embarrassed to talk about your health, no matter what it may be about.
I was extremely lucky to have a GP that went above and beyond. But I've heard countless stories of patients being ignored or thrown into the "you're too young" category. And as everyone on here knows, this is just simply not the case. You really are never too young. So, push as hard as possible, and never be scared to push back and ask for further investigation. Never gamble with your health!