My name is Rachel, I’m one half of a studio for architecture and interior design. I live in NSW with my partner, Micky and our greyhound, Bill. I am 30 years old, with some grey hairs. I’m the first generation Australian in our family, my mother was born in France, and my father in Italy.
In October 2017, my dad, who was then 59, was admitted to Prince of Wales Hospital in Randwick for surgery to remove a cancerous growth on his tongue. Dad made out like it was no big deal, they were just cutting a small growth off the side of his tongue. But when I went to visit him after the surgery, I could see immediately that it was, in fact, a very big deal.
Dad’s face was a swollen mess, with tubes coming out of various places draining fluid.
The surgery had involved pulling Dad’s tongue through an incision in his upper neck, removing approximately one third of his tongue, and then grafting some tissue from the inside of his wrist to the wound. The swelling was so bad he couldn’t breathe through his nose or mouth; he had a tracheostomy for nearly 4 weeks. He had a feeding tube up his nose and had to communicate by writing on a piece of paper.
I nearly fainted that first day I walked into the hospital room; there was my Dad, who wasn’t a smoker, didn’t drink, going through hell.
The positive from this is that the surgeons removed a clear margin, and there was no cancer in the lymph nodes they removed from his neck as a precaution.
Dad then began the long road of recovery from the surgery; his speech was affected, and he had a lot of trouble swallowing. He had regular check-ups, but we were all hopeful that eventually, everything would go back to normal.
Then, in April 2018, we received the news that the cancer had returned, this time in the base of Dad’s mouth and in both sides of his neck. It was very aggressive, and the next course of action was radiation therapy, and chemotherapy; with the likelihood of an ‘all clear’ being given was 5-10%. Despite those odds, Dads decided to fight the cancer.
The radiation therapy came with its own set of side effects: nausea, fatigue, dizziness, and pain. But Dad never complained. After 8 weeks of treatment at Liverpool Hospital, Dad was feeling better; the swelling in his face had gone down, and we were all hopeful that the combination of radiation and chemo had done the trick.
The treatment did reduce the size of Dad’s cancer, but didn’t eliminate it. We were also told that the cancer had also appeared in Dad’s lung. But he kept fighting.
We were fortunate that around this time (about September 2018), the government subsidised immunotherapy for Dad’s type of cancer – so he gave that a go too. The side effects from this were bad – intense nausea and vomiting, and extreme fatigue. Dad was hospitalised a few times for 3-5 days each time during September/October, as he could not keep any fluids or food down (all of which went through his PEG – a feeding tube to the stomach).
Then, in November, Dad was hospitalised again. The immunotherapy was not working against Dad’s cancer, and we decided that it would best to stop the treatment. Dad remained in hospital while the doctors tried to manage the side effects of the immunotherapy; and eventually they were able to stop most of the nausea and vomiting. In December, Dad was moved to palliative care.
Throughout December, I watched as my Dad deteriorated; I witnessed him transform from a person who I loved, into a husk of a man.
On the 19th of December the decision was made to turn off the PEG feeding tube – from then on, Dad would only receive 120mL of water, 4 times per day. He wore a nappy and urinated into a tube. My Dad was skeletal and unrecognisable – he was so thin that his earlobes disappeared, I could see every single one of his ribs, the start and end of his femur; his teeth looked too large for his head.
I was there when he died on the 2nd January 2019. I sat by his bed as he breathed his last breath.
What my father went through was horrific, and throughout it we were all helpless, at the mercy of the limits of science. What I learned while Dad was sick is just how little we know about cancer and how to treat it. It felt like every time I asked a question, the answer was ‘we don’t know’. I felt powerless. I struggled with being unable to do anything to help; I wanted to magic the cancer away
Now, three months on, I have the opportunity to take back some control, and do something to raise money and contribute to research that will hopefully, one day, mean that no one need go through what my Dad went through, what we went through as a family.
I read about a trail in QLD that was 161km long, and bookmarked it, as we were due for a family hike. In 2016, Dad my brother and I hiked Hinchinbrooke Island over 5 days, and it was one of the best things we did together – Dad really loved it.
So when my wonderful friend Chelsea suggested we do a fundraiser for cancer, I knew exactly which walk we should do. The extra 39km from Ipswich to Brisbane just made the walk a nice round 200km. We aim to complete the trek over 5 days, raising money for as they fund research into all types of cancer. ”
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