HOW was last week for you?

Did you know that last week was Sarcoma Awareness Week? For the majority of people, the answer will be no. Do you know what a sarcoma is? I know that before November 2015, I would have had no idea what a sarcoma is, never mind Sarcoma Awareness Week!

I am a 50-year-old man and I live in small Fife coastal town Inverkeithing. I live with my wife and our six-year-old son and I had a job working as an area organiser for Unison.

Due to ill health for well over 12 years now, my career with Unison was cut short as I applied to take medical retirement. It was October 15, 2015, when I could finally retire. I was 46 years old at the time.

Instead of having a traditional “work night out” to celebrate my retirement, I celebrated this by eating a ham salad in Ward 102 at the Royal Infirmary of Edinburgh (RIE).

It was only down to really bad luck on my behalf that I now know what a sarcoma is. This is down to being diagnosed with what is an exceptionally rare sarcoma, one that is called malignant myopericytoma.

On October 7, 2015, my life was saved, thanks to our National Health Service and a surgical team led by Mr Bill Walker, head of thoracic surgery at RIE.

Over a 12-week period throughout the summer of 2015, I had a tumour that started to grow on the wall of my chest, and it ended up growing to a circumference of 25 centimetres with a depth of 25 centimetres.

My oncologist would often joke “that the tumour is that big, Kevin, that it’s like having a tumour the size of a dinner plate on my right shoulder”. Whatever the size, I was totally exhausted living with this tumour.

After surgery I was in the intensive care unit (ICU) and in a medically induced coma for three days. I can vaguely remember when the medical team brought me out of the coma and I remember feeling really, really tired, and me asking the staff to “turn the machine on and put me back to sleep”. I can always remember the nurse saying, “oh Kevin, I’m afraid that it doesn’t work that way!”

Then I can also remember that for a good few days I was unable to move my right arm, and the surgical team coming to see me and trying different things to get movement back into my arm.

I knew something like three weeks before surgery what exactly was going to happen. At an appointment I was told that during surgery I would be lying on my side, then cut open, my right side of my rib cage would be removed along with roughly a third of my right shoulder blade. Then during the surgery I would also have the right side of my chest “rebuilt”.

I had given authorisation for a photographer to be present for the 12-hour surgery, and I was given a set of the photos. You will be able to find them on my website: When the surgical team were doing the rounds, they told me a few times that the pathologists at both RIE and the city’s Western General Hospital (WGH) had never seen a tumour like this before.

In total, I spent about 16 days in hospital before I was discharged. It wasn’t until an early Saturday in November 2015 that my outlook on life was going to change. I had been resting when my wife Kirsty answered a telephone call for me. It was my oncologist from the WGH calling me with some of the pathology results and reports.

It was explained to me that the tumour was so rare that pathologists at the RIE, WGH and the Beatson cancer clinic in Glasgow had no idea what the tumour was. Hospitals in England didn’t know either. The tumour was sent to specialists in the US and they found the answer my surgical team was looking for.

My oncologist then told that I have a rare form of cancer called malignant myopericytoma and that it was a part of the sarcoma grouping of cancers. I was told it was so rare that I am only one of 15 people worldwide with this form of cancer. I handed the phone to my wife Kirsty as I just couldn’t take in what I was being told.

For the past few years I have run a social media campaign called One of Fifteen to try to find the other 14 patients worldwide. I use Facebook, Twitter, YouTube, Instagram and have my own website. I have had limited success with this campaign – I’ve found three people with malignant myopericytoma.

One man is from California, one man is from Brazil and another man is from Australia, and I keep in touch with them.

Please help me find the others by liking my social media pages and by visiting my website. This also helps you to be aware of sarcomas.

Click here to view Kevin's website.