Hi, my name is Lisa and I’m extremely lucky to be a sarcoma survivor. I was diagnosed when I was six and it all started with a sore leg so my parents took me to the doctors. The first doctor thought it was growing pains but it was still painful after a few days to the point where I was finding it hard to walk. We went and saw another doctor who sent me for x-rays. When we went back he said it could be one of three things: Old Injury, an infection in the bone or bone cancer. He sent us straight to PMH where they put me into theatre and did three biopsies. These were sent overseas to examine….the results came back as Osteogenic Sarcoma.
I then had to have a whole pile of tests to find out if it was anywhere else in my body but luckily for me it had not spread as it is a fast growing cancer. I was allowed to go home for the weekend but I was back in hospital on the Monday to start Chemotherapy. Monday would be four hours of Methotrexate followed by a five day stay at PMH hooked up to a drip to make sure it didn’t crystalize in my kidneys. This would happen for two weeks and then I’d have a mix of three drugs in the one day (which made me vomit the whole time), followed by a two week break so that my blood count could go back up. The chemo lasted for a year; six months into it they removed three inches of my right femur and replaced it with a steel plate. I couldn’t walk on it for months so I use to slide down the hospital corridors on my bum.
After the chemo, they waited for three months before they would operate. It was a new procedure where they removed my fibula in the left leg and grafted it to where they had removed part of my femur. I had my parents worried as I was in theatre from 7am to 10pm….they were informed the procedure would be finished around 2pm. I was in my own room with my own 24 hour nurse for three days. I had to remain flat in bed for weeks until eventually I was allowed to prop my back up a little bit extra each day. When I left hospital, I was in a caliper which had to be worn at all times.
To be honest, I had to ask my mum for a lot of these details as I can’t remember all of it. I even found out that I was the only one who had their limb saved that year. I guess having bone cancer when so young has its advantages. The main things that I remember from back then include the wonderful times I had at Camp Quality, the amazing staff at PMH and the famous faces that came to visit us kids in hospital. I remember not being a big fan of hospital food but loved the chips and gravy from the cafeteria. Luckily for me, mum enjoyed the hospital food so we traded meals most of the time.
One day at a friend’s place I was hopping around on my crutches in their new sandy backyard when I fell over and unfortunately cracked the graft. I ended up being in hospital for three months because every time they x-rayed my femur it had bent like a banana. I was eventually sent home in a spiker plaster which is a full plaster from chest to ankle with a rod holding my legs apart. I was bedridden the whole time and my poor parents had to turn me every few hours so that I wouldn’t get sores. After six weeks I went back to PMH and they changed it over to a normal full leg plaster for another six weeks. This also didn’t work so they ended up operating and sliding a steel rod down the middle of my femur. I had to have an x-ray every week so we became well known at the x-ray department and would usually ask them how the x-rays looked before seeing the doctor. I remember one time we asked and the lady looked confused as she wasn’t sure if it was meant to look the way it did. We found out it had bent like a banana yet again (along with the steel rod) and strangely enough I wasn’t in any pain. Back into theatre I went but this time they placed a k-nail down the middle of my femur. It ended up doing the job and remained in my femur for a few years before being removed when I was fifteen. We finally had a winner!
During my teen years I started to notice that my right leg wasn’t growing. It ended up being 8 cms shorter (lucky for me I didn’t have a huge growth spurt!). I had to wear a raised heel which I used to disguise by wearing long pants that covered my shoes. Funnily enough, I had more of an issue with this then when I was bald. I decided to research what options I had and after ten years of trying to find a doctor who would operate on my leg again I finally found one in Perth. After so many years of trying to get my bone to stay straight the lengthening procedure required my femur to be broken again in order to attach an illizarov frame. I had this frame on for eight months and had to turn four screws four times a day which would pull my broken femur apart so that new bone could form in-between. After a few complications, including my knee remaining frozen for six months, we finally gained just over six centimeters. I had this procedure done five years ago and although it was the hardest year since being diagnosed I’ve never regretted going ahead with it. The small things that people take for granted like wearing a nice pair of heels or being able to wear skirts, shorts and dresses in summer were all new to me at the age of 27. I now have a whole new wardrobe that doesn’t include any long flared pants or altered black sandals.
To anyone battling cancer, there will be some tough days and there will be good days. Don’t give up on the tough days. You learn about yourself, what you are made of. Although at times I wish I had not had to go through this, it’s a journey that has made me and my family stronger. Cancer forces you to focus, prioritize and learn what’s important….it also brings out the best in you!