I never really took the time to understand how serious Dad’s cancer was. I guess that is because he never looked sick, he didn’t stop his life for cancer, so why should I?
I think this was the most challenging part of Dad’s whole ‘ride’. He never once decided that cancer could control his life. He worked as normal every day, with the only difference being Mum quit her part time work to be by his side the whole time.
Mum was not only Dad’s wife but his nurse, carer, best friend, secretary and apprentice. While she was following Dad to every appointment, making sure he was eating well and taking his medication, she was also running the family farm and making sure us kids were ok, she never stopped. Ever. She is honestly to most insanely talented, strong woman I have ever met, basically she’s “F ## king Awesome!”
Dad’s cancer journey had many ups and downs regarding his treatment. Mum and Dad were told that the best outcome would be if they gained access to a clinical trial. The medical oncology team at Dubbo quickly found a clinical trial that dad would be able to access, however with the size of his brain tumours he was ineligible. So, Dad underwent radiation on his brain tumours allowing him access to the trial. Dad began radiation on the 26th of July, 2017 in Orange. While he was receiving radiation on his brain for the tumours, he also received radiation on his rib to get rid of back pain and to try and take him off pain killers. To be eligible on the trial Dad was only allowed to take certain prescribed medications and was not allowed to use any alternative treatments. After a 2 week “washout” period, he began the clinical trial.
The Clinical trial was held at Blacktown hospital and was an American trial. It had 2 ‘arms.’ One arm was the use of 2 new chemotherapy drugs that were available in Australia but not used in combination, and the second arm was the use of the 2 chemotherapy drugs as well as immunotherapy. Immunotherapy is one of the latest cancer treatments, which unlike chemotherapy & radiation, has minimal side effects & it is basically boosting your own cells to fight the cancer cells. Immunotherapy has changed the outcome in many advanced cancers, most notably melanoma. The immunotherapy drug that Dad would receive was Nivolumab. The selection of which arm of the trial Dad would receive is basically like flipping a coin, it is randomly picked by a computer programme. Dad was put on the first arm of the trial. While we were hoping Dad would be placed on the second arm of the trial, we were just glad that he was able to begin receiving some treatment.
It wasn’t till I got a call from Mum telling me that the trial Dad was on wasn’t working, that I really started to feel the reality of Dad’s cancer. Mum and Dad didn’t let this news shake their spirit though, instead they returned home to look for more treatments. During the time Dad was on the trial, the Nivolumab was placed on the PBS in Australia making it readily available to many more patients, this was great news for Dad & because he had already utilised a number of chemotherapy drugs through the trial he was deemed eligible to access the Immunotherapy through the PBS. It honestly felt like we were going from treatment to treatment with more and more doctors saying “sorry but this isn’t working”.
While we were switching from one treatment to another, I finished my HSC and had to make another important decision. “What was I going to do next year?” I had been accepted to university in Sydney and Dubbo but I didn’t feel like I was ready to sit through more classes after just finishing school. It wasn’t till Schoolies when I decided what I was going to do. I originally went to the Gold Coast with some friends from school but soon realised that it wasn’t where I wanted to be, so I booked a flight to Mount Isa to spend a week with Belle and my cousins, Billy and Sophie.
Within the first 24 hours of being in Mt Isa, I decided that I was going to move to North Queensland (some 2000km from home) and spend the year working as a governess on a cattle station just north of Cloncurry. Thanks to Aunty Nic, I was offered an awesome job opportunity with an amazing family. I was quite anxious making this move and with Dad being sick it made it a bit more challenging. But with encouragement from friends and family, I packed up my car and headed north. I have never been so happy after making such a big decision, and I never really felt that far from home.
After Dad was taken off the trial, he commenced immunotherapy in Dubbo. He didn’t experience any side effects and was working as normal. However, at one stage in Dad’s immunotherapy treatment it looked like his liver wasn’t going to handle the treatment and there was talk of withholding treatment. But after a few alterations to his current medication, it improved greatly and he was able to continue treatment. Dad’s 3-month scans after being on immunotherapy showed some good results, but also showed that some tumours had grown, however Dad was able to continue treatment.
Dad’s scan on March 26th showed that the cancer had progressed, meaning immunotherapy was no longer an option. Dad was then placed on another chemotherapy drug on a 3-week cycle.
Belle and I drove home for Easter (2018) to spend time with Dad and the rest of the family. I am so glad that we chose to go home for those 2 weeks and enjoy Dad’s company. I feel because we didn’t think at all that it was the last time we were truly going to be together as a family, I almost took it for granted.
Throughout his treatment, a new tumour developed on the base of his spine, which caused Dad pain. Mum took Dad to Dubbo to hopefully get some pain relief, but he ended up staying in hospital for 6 days and returned to Orange for semi urgent radiation.
Again, Dad received more scans that showed the cancer was continuing to progress. Mum and Dad decided to take a break from chemotherapy and radiation treatment in order to help Dad regain strength. After the last chemotherapy treatment not working, there were no further medical treatment options available to Dad and he couldn't qualify for any further clinical trials as one of the brain tumours was continuing to grow & was unstable.
So, Mum and Dad decided to pack their bags and head to the Gold Coast so that Dad could receive various intensive alternative treatments to try and reduce his pain as well the amount of pain killers he was taking and to boost his immune system.
Dad’s treatment caused us all to experience many different emotions that I personally didn’t know were possible to experience at once. Some days I was so incredibly happy and optimistic it almost felt wrong, I felt as if cancer would never win. But in a second it could all change, I would become so down I didn’t want to talk to anyone, at times I isolated myself from people who meant the world to me. But most days I was numb towards the subject. I found isolating myself from people I was close to made it all feel less real.
Being away from home during Dad’s treatment was incredibly challenging. After seeing Dad full of energy on one visit and the incredibly tired the next, it was really quite a confusing time. My family and I were so incredibly lucky to have such a tough fighter in this battle. While Dad was unwell some days, his spirit never changed. He was always going to beat the ‘Big C.’
Keep following us for the next few weeks as I attempt to walk through the day we lost Dad and how we continued to get out of bed every morning.