I am a survivor and this is only part of my journey.
At 8 years old after severe pain in her shoulder, Susan was diagnosed with Ewing Sarcoma on her right arm. 8 years later she was diagnosed with osteosarcoma - a radiation induced tumour.
“I remember being so young and scared the only time I had ever been to hospital was when my poppa passed, so to me hospitals were a place you didn’t come home from. “
Susan underwent both Chemotherapy and Radiation treatments at 8 years of age. She says they had different side effects, but both were extremely intense. Chemotherapy had her up all day and all night - either throwing up or in the bathroom from the constant fluid pumping through her small body. The radiotherapy caused quite severe burns and blistering, and even stunted the growth on one of her arms, so it was shorter than the other, and her range of movement was affected.
Even through all of that, the hardest was yet to come. When Susan was diagnosed with cancer the second time - in an unfortunate twist, due to radiation treatment that had helped save her life when she was first diagnosed - she had chemotherapy and surgery. Susan says “This surgery changed my life. They removed my whole humerus and replaced it with a metal prosthesis. I lost most movement in my arm and the things I used to take for granted I could no longer do like tying my hair up or playing tennis. “ At this point, Susan was 16 years old. On top of having to come to terms with recovering from cancer, and adjusting to a life with an essentially immobile arm, she also had to deal with pressures of society on girls and how they look. She says because of this, it's been a long journey to learn to love herself as she is.
This, along with some other side effects have stayed with her for the rest of her life, and some have even developed years after she has been in remission:
“My immunity has never been the same since and I am susceptible to picking up bugs more than others. My arm is the one part of my treatment that I still struggle with. I have little to no movement in my arm so little things like even getting changed into clothes can be sometimes difficult, but it's amazing how you learn to adapt and try new ways of doing day to day activities. I also have tinnitus - which is constant ringing in the ears - and loss of hearing which has only just started as a side effect in the last few years.”
Despite this, Susan has a positive outlook about the whole experience: “There have been - believe it or not - many positive experiences to come out of a life time of illness. I had to grow up fast and it made me have to face situations like death earlier in life.”
“The best gift I can honestly say was having my most favourite rugby player at the time (Matthew Cooper) come visit both when i was 9 and then again when I was 17. To have someone you look up to take their time out of their schedule to visit a girl with cancer blew my mind and to then visit me again when he heard I was sick again.. it was my favourite memory.”
Beyond that, the support Susan received throughout both diagnosis’ she feels “honestly helped saved my life.” Her mum spent every day by her bedside and never left. She feels blessed to have had amazing family and friends who constantly reminded her no matter what she was loved.
Even outside of her family & friends, Susan had a large support base. The hospital staff, child cancer foundation and Canteen NZ to name a few. She made a lot of lifelong friends through these organisations and while having treatment. For Susan, this has also meant living with the very real reality of having to support others who are going through the same battle, and dealing with friends loosing their battle with cancer. This has been the hardest part of the whole cancer journey for Susan.
“I lost my best friend to cancer when I was young and many others, and it felt at times I was going to more funerals than birthday parties. Cancer is so prevalent now and I use my experience as much as I can to show that the road can be tough but it can also change your life to see the beauty in it and to treasure each moment you have with the people you love. l am a survivor and this is only part of my journey.”