November 2000, Amy, was just 5 years old when she was diagnosed with Ewing sarcoma. Amy has kindly shared her story and why raising awareness and early diagnosis is vital.
My journey started when I had severe groin pain, the pain was so bad at times that I was unable to walk. I was diagnosed early with Ewing sarcoma and therefore had very few symptoms.
My treatment involved a bone graft of my left femur followed by chemotherapy. The chemotherapy was gruelling, but the longer term effects have come from the surgery itself. I have had 3 major operations on my left femur. The first was a bone graft, the second to replace metal work 5 years later as the bone was still not strong enough to support me on its own, and the third was another 5 years later to remove the metal work. On both follow up operations the metal work had broken and I spent the best part of a year each time on crutches and in serious amounts of pain. As a result of surgery, I now have hip dysplasia and will eventually need a full hip replacement.
I didn't wear a skirt or shorts for years after my operation, due to being scared to show my scar, I didn't want people staring or asking questions, and it was something which bothered me for a long time.
Unfortunately after 18 years I am still suffering on a daily basis with pain in my left hip due to the hip dysplasia caused by the operations which took place because of the cancer.
Whilst battling cancer, many people in my community went above and beyond to raise money for me. There was fundraising parties, and two family friends even shaved their heads to raise money for charity and support me through my journey. The kindness of people in the darkest of situations never fails to surprise me.
There are certain things I am never going to be able to do. Running, for example, although some may say I haven't really missed out on much there! I have to be careful with any kind of active sport, as falling means a minimum of a few days pain or at worst a broken femur and subsequent surgery and physio.
My strength has been my family. Not just my immediate family either. My aunts, uncles and grandparents were the most supportive people, not only for me, but also my sister, mum and dad, more than I could have ever hoped for. They kept my spirits high and were always there for constant encouragement. Even when they struggled to be strong themselves they always helped me remain fighting.
Having cancer becomes a big part of your life, forever, but don't let it define you!
Continue to enjoy your life as much as possible and keep positive. A sense of humour can get you through even the toughest of times and even if there isn't light at the end of the tunnel, it doesn't mean you can't create light throughout your cancer journey. It’s not easy, but you can do it.
It’s important to raise awareness about early diagnosis as it really can be the difference between life and death. It effects your treatment and the success rates of that treatment. An early diagnosis means I am still here today!
An early diagnosis for someone else may mean that a mother doesn't lose a child, or a husband doesn't lose a partner, or a child doesn't lose a parent.