Louise’s Story

My name is Louise and on the eve of my 24th birthday I was diagnosed with Ewing’s sarcoma, a form of bone cancer, which was found in my left tibia.

I worked in a bar and had noticed a lump on my shin which was extremely painful, after pestering my doctors for weeks I was finally able to get a referral to emergency. The emergency doctors had no idea what was causing the lump or the pain and I was referred for an x-ray, then an ultrasound, then an MRI then a second MRI with contrast dye. Finally after the second MRI they determined that it was some form of sarcoma in my leg.

After spending my 24th birthday inside a CT scanner, I was referred to the team at Sir Charles Gairdner Hospital and from there, I underwent 3 months of chemotherapy. I had limb salvage surgery which included a bone allograft in my tibia with a rotational muscle flap. I was amazed at the developments in limb salvage surgery which meant I could not only keep my leg, but I could keep my own knee joint as well!

I am still undergoing my last 8 months of chemotherapy, I have about 1 month to go and then my treatment is complete. I am so grateful to my team who has helped me on my journey, Dr Richard Carey-Smith, Dr Alex Powell, Kendall & Meg from the AYA Cancer Network and all the support staff & nurses. Also my amazing exercise physiologist Jeni Woodhouse – we told Richard I would walk by Christmas! Nobody thought I could but without Jeni’s help it wouldn’t have happened. She is amazing at her job & for the work she does for sarcoma patients.

All of the people involved in my care have been unbelievable. I felt like I was a grown up until the words “you have cancer” came tumbling out my doctors mouth and the first thing I wanted to do was run to my Mum and Dad, put my hands over my ears and pretend it was all just a bad dream. I have fallen into that “not quite adult” age gap of cancer patients but with Kendall and Meg (AYA cancer support) holding my hands I didn’t feel quite so terrified. They took my calls on weekends & late at night. Answered countless emails with all my questions from “what is sarcoma?” to “can I get a spray tan over my skin graft”. They never make me feel as if I am being paranoid or overreacting.

Dr Richard Carey-Smith is most definitely my angel for saving my leg, his amazing team were able to do such a great job that it is about 85% back to how it was and I plan on getting that 15% back before this year is out! He is an amazing surgeon and a kind and caring person. I have never left his office without feeling as if all my questions are answered and he ensures that I fully understand everything that is said to me. His team made me feel safe when I underwent my surgery and they even got me a private room for my recovery which I appreciated so much as sharing a room with 3 other people did not appeal to me!

Dr Alex Powell has managed my chemotherapy from the beginning, he had the unfortunate job of telling me I was going to lose all my hair, eyebrows & eyelashes. Yet again I have found an amazing team from an oncology standpoint, Alex and the nurses have been so supportive through my chemotherapy. Reassuring me that things I am convinced means I am falling apart are actually just regular side effects. I cannot speak highly enough of the nursing staff both at Sir Charles Gairdner Hospital and Joondalup hospital, they know me by name and are always happy to see me. They remember what my plans were outside of chemo and ask me about them, even when I haven’t been in for months. Which when you consider how many patients they see is pretty spectacular!

I have also found some amazing support from Mandy who runs Sock it to Sarcoma! When I was diagnosed I really struggled to find any local information or support in regards to sarcoma, Mandy and her charity were the only place locally that I could find accurate information. The work that Mandy and her team are doing to bring awareness and research to Perth is just incredible. It means so much to know that in the future, anyone diagnosed with a sarcoma has a strong support team based locally with solid accurate information. Mandy is an absolutely amazing woman who I am lucky enough to have met and intend on assisting with Abbie’s dream in any way I can in the future.
I have found my experience to be a roller coaster, there have been ups and downs but with my family and friends by my side I have been able to get through it all. My family are the source of my strength, they carry me through the lows and celebrate the highs. They have all sacrificed so much this past year for me and every day I am thankful for each and everyone of them. I have learned to appreciate every day with my husband and to relish all the little moments in life rather than just letting them pass by. I have learned to walk tall with pride without a wig on and look people in the eye.

My focus once my treatment is over is to help Sock it to Sarcoma! Anyway I can as I feel it is so vital to bring awareness to the importance of early diagnosis. If something doesn’t feel right with your body then question your doctors. If you are unhappy with a doctors opinion then get a second or third opinion. Take charge of your own body – only you know how you feel.

I also want to hopefully show other young women that a cancer diagnosis doesn’t mean you have to stop being who you are. You can still be strong, you can still be happy, you can still be confident – you can still be you!