In her own words, Rene Adamik shares her story of being diagnosed with adamantinoma in 2006 when she was just 21, to give hope to bone cancer patients and to raise awareness of this rare disease
My story began when I had a painful shin and developed a limp. To be honest though, I recall having issues with my leg from being 8 years old.
I decided to arrange an x-ray myself as my leg was getting really bad and I had a feeling something was not right.
When I visited my GP I showed him my x-rays and MRI scans, and he referred me to my local hospital, and they referred me right away the Nuffield Orthopaedic Centre in Oxford. That’s how we found out that I had an adamantinoma growing in my shin (tibia). 15 cm of my tibia had to be removed.
Following the removal of the adamantinoma I had internal bone transport using an Ilizarov frame for two years in order to regrow 15 cm of my bone. Despite a few complications, I managed to regrow all the missing shin bone.
I have been lucky to have all clear since the adamantinoma was removed. I still have my follow up appointments every 9-12 months. Just recently I got all clear in January 2021 which will be almost 15 years all clear in October this year.
I never knew that something like this could happen to me.
I played football, hockey and danced all my life prior to being diagnosed with cancer. So, it was definitely not something that was easy to take on board. However, at the very first meeting my surgeons said that they were not giving up on my leg and that they were going to get me back on me feet and this message kept me going. My whole recovery took nearly 5 years.
Following all my surgeries I learnt to be conscious of my leg at all times. I had to learn how to walk multiple times.
I learnt to appreciate being able to walk on my own without any walking aids and, honestly, it’s a freedom not everyone appreciates.
I’ve had to adjust my wardrobe and not always had the freedom to do the things I want to do. I did successfully skydive 3 years after recovery though, so I think I did pretty well.
My doctors, my nurses, family and friends have been my strength. But I also had a ‘dream’ I kept in my head which gave me strength too. I wanted to be able to dance on my own again and I knew that in order to do that I could not give up. Step by step, every day I got my life back.
My message to others is it’s Ok not to be Ok. No one will ever understand your emotional and physical pain but nevertheless you need to remember that you are never alone and there is hope. There are people around you who love you and are here to support you.
When life gives us cancer patients a second chance, although often we need to compromise with a big sacrifice, we just need to keep moving forward. No matter how bad it is and how bad it gets we are going to make it.
Together we can do this. Put you mind, soul, heart into work and be your own hero.
Awareness is so important because kids often complain about painful bones or legs, and with lack of awareness their families would maybe assume this is because of sports activities or something else, not knowing there could be a bone cancer growing inside.
It’s quite surprising that in 2021 so many people have no basic knowledge about what is ‘cancer’ and what we can do to recognise the early stages. Early diagnosis is key to survival and a good life post cancer.
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