Jonathan’s story

It was the end of 2018 and my 2019 New Year’s resolution was to lose some weight. Work offered a gym in the basement carpark, so the plan was to go every day for thirty minutes. In the first four months of 2019, I had managed to lose just under 2kg, however I also started to feel bloated after each lunch, but I didn’t think much of it at the time. I was also struggling with a lack of smell but at the time knew my dad had suffered the same symptoms after using the nasal spray with a runny nose, so again, I did not think much of it.

It is really from June until the start of our European holiday in September that my weight loss became more significant and on top of this, my sense of smell shifted, where I became very sensitive to particular smells especially cooking.

As a result, I was unable to eat much coming home from work, sticking to salads. I was still feeling bloated. While away, I was not able to enjoy most of my favourite foods and I knew I needed to see my GP in the hope she would recommend a nasal specialist.

The day after our return from Europe, I felt a pain on my lower left-hand side, so after searching online for possible causes, I had in mind it could have been Diverticulitis. The pain eased the following day, so I was more convinced that this might have been the cause. I booked my GP appointment mid-week as I did not want to miss my first day back at work, however getting to work by public transport on those first two days back was the most exhausting experience. Again, knowing I had my GP appointment, I soldiered on.

The day I met my GP I had a 38.2C temperature and after explaining my symptoms, I was sent for blood tests and a CT scan. I was asked if I wanted contrast but as I was not very good with needles and because the doctor had confirmed it was ok without, we proceeded. Two hours later, I was asked to come back for another scan with contrast. Around 5pm that day, I received a call from my GP asking me to head straight into emergency.

With further test during the night and the following morning, I was told the devastating news that it was “nasty”. In fact, the surgeon never mentioned it was Cancer. I was not even 39 years old. My kids were 18 months old and my second nearly 7-year-old at the time and of course the many medical personnel all had the same question which was, “do you have any kids?” and this is what tore me apart.

I also found out there was extensive spread of my bowel cancer (at the time I was not told this was stage IV) and on top of this I had a puncture. As a patient you want to start treatment immediately and only now do I understand why it took time to get things going. I was sent home a few days later with antibiotics to treat the infection, however a little over a week later, I was back due to a complete blockage in my bowel.

My first open surgery took place the day after, on October 31st where about 20cm of my bowel was removed. By the time I went home, I was about 15kg lighter since the beginning of the year and was not only physically weak but mentally as well.

In December, my fortnightly aggressive chemo started, where 4 drugs were administered. My wife and I always understood that the aim of the chemo was to get the legions on the liver to shrink to an operatable size, however three months later, we were told this was never the case, that because the cancer did not originate from the liver, there was no guarantee growth would not come back and my weak immune system put me at risk.

In the first quarter of 2020, my first CT scan results showed a 50% reduction and by mid-year a further 22% which was quite amazing. Despite these positive outcomes, I remained cautious and had accepted the fact chemo was there to stay. A month later, in July, I was told that after discussion with the liver surgeon, he was happy to give surgery a go. We met him in August and for the first time I felt a glimmer of hope. That was the best money spent on a half hour specialist consultation.

July 29th was my last chemo session in preparation for liver surgery scheduled in the first week of September. The entire 40% of the left side liver was removed as well as 30% of the right side. We were always told of the likelihood to resume a bit of chemo to treat the potential small remaining legions, however a year to the day I was admitted to emergencies, it was confirmed I no longer required chemo. Nine months on, I’ve had my third CT scan with clear results, so the aim now is to be told the magic sentence in over 3 years’ time.

I have been reluctant to share such a story because I know cancer takes many lives and we all know someone who is or has been affected by this disease so the last thing I want is to sound insensitive, selfish and disrespectful. In many cases we hear tragic news and I know that when you are told this devastating news, you want to know your chances, so I am hoping that a positive story (although not over) can re-ignite hope.

We have no relatives living with us in Australia and I might have endured a painful period, but this is nothing compared to the emotional and mental strain the family and particularly my wife had to go through. I am also fortunate enough to have a very supportive work who have allowed me to work from home and I was even working from my hospital bed to the extent that unless I had told work colleagues of my health issues, it was business as usual.

My simple message to all is, listen to your body, do not let your fear of doctors and hospitals prevent you from getting a checkup. Bad news could save your life, especially when detected early!