The date I had the operation at the Royal Infirmary Edinburgh to remove the massive tumour of the right hand side wall off my chest, was Wednesday 7th October 2020. Due to the size and rareness of what was removed from me, I had one month after this operation to wait for the pathology results.
When I was first diagnosed with malignant myopericytoma, to start with I couldn’t pronounce (well I could and can pronounce the world malignant) it, never mind having a clue what type of cancer it is. It was during that conversation with my oncologist in November 2015 I was told that it was an extremely rare form of cancer. Then I was told that it is that rare, I am one of fifteen people in the world with this rare form of cancer.
Can you imagine being told one month after having to have live threatening – life saving – life changing surgery that I was only 1 out of 15 people in the world with such a rare cancer!
Another way to look at it is this: depending on what web site you look at, there is roughly 7.8 billion people living in the world. So 15 people out of 7.8 billion have malignant myopericytoma (going by the figure I was originally told in November 2015).
Due to me wanting to know more about my cancer and also wanting to try and find the other people in the world with malignant myopericytoma, I launched my ONE OF FIFTEEN website and social media campaign. This campaign is not only about my rare cancer journey and me trying to find ‘the other 14 people’ with this cancer. It is also about creating awareness of it.