Early last year I was diagnosed with an extremely rare and highly aggressive cancer called alveolar soft part sarcoma. There are only 20 cases per year in Australia. I’m from Shellharbour, near Wollongong. My oncologist referred me to the Nelune Comprehensive Cancer Centre at the Prince of Wales Hospital so that I can receive the specialist care I need.
My mum and I come to the Centre every second Tuesday for clinic appointments and every three months for scans, however when I am unwell with treatment I come up more often. At the moment, I’m transitioning from one treatment to the other. This treatment is called a TKI inhibitor; a targeted therapy meaning it targets the cancer directly, my cancer doesn't respond to chemotherapy making it difficult to treat.
During my visits I use the lounges and the wifi [made possible with the help of Dry July] regularly. Being 22 years young, I find these facilities make my life so much more comfortable. Spending a lot of time in the hospital means that my phone data usage can get very pricey. The wifi here has made it possible to surf the web while not having to stress about the money being spent. I also find it very useful for doing study while receiving treatment. So many of the younger patients are in the middle of their studies and a cancer diagnosis really puts your life on hold. Being able to study here is a big plus.
My aspiration is to become a hairdresser and do more studies in hair and make-up. I also want to get the media on board to raise awareness about my form of cancer because it’s so rare. If I can have a voice I will tell my story, not only for me but for all the other sufferers out there.
I’ve found my treatment here wonderful; every department in the hospital takes the time to make sure I am comfortable and happy. For example, after my surgery and when I was receiving transfusions and was being treated alongside older patients, the nurses always take the time to come and socialise with us young ones.
My care has been nothing but amazing, I have always felt comfortable and happy and when I am sad there is always a shoulder to cry on, [staff] really go above and beyond to make sure their patients have quality of life.
Seeing your daughter suffer from a disease that we have no control over is hard, but what makes it a little easier is the care she receives, making sure she is always happy and content is what makes this easier for me.
- Mikaila's mum