Thank God For The Internet

I was originally going to call this entry: The Power Of The Internet. But then I found myself singing along to the Marillion song in the back of mind, Interior Lulu from the 1999 album

‘In our racing stripes
We rejoice at being “connected”
Without touching
Thank god for the internet’

One of the key aims of this One of Fifteen campaign was and still is, to find the 14 others worldwide with Malignant Myopericytoma. I had my routine appointment with my oncologist recently at The Western General Hospital Edinburgh (WGH). I was asked about One of Fifteen and if I have come across any one yet with Malignant Myopericytoma. I explained to her that I had been contacted by someone from California. My oncologist said that she was pleased that I had made contact with a fellow cancer survivor with my condition, as she knows how much this means to me. However, I was reminded that some of the original 15 might no longer be alive and there could be a change in the number of people worldwide with this rare form of cancer. I was also reminded that it was back in November 2015 when this was diagnosed.

I remember saying on the BBC Radio Scotland The Kaye Adams Programme that I was delighted when the guy from California got in touch.

Around 4 weeks ago, One of Fifteen received a message from a family in Australia that a family member had recently been diagnosed with Malignant Myopericytoma. The family have asked me to keep their details etc private and I appreciate that.

We have exchanged several messages and we finally managed a video call on Sunday 25th March to exchange stories etc.

After surviving cancer for 2 and a half years (so far), I finally managed to speak to a man in a similar age group as myself that has recently been diagnosed with Malignant Myopericytoma. We spoke for just short of an hour about a range of issues. I actually took a ‘pain flare up’ at the tail end of our conversation and when we ended the call I felt really emotional.

When I asked the man how he managed to track me down, he said that he saw me on the BBC website and then came across this Blog and the Facebook page. So, the power of the internet works. As Steve Hogarth sang, “Thank god for the internet”.

Live at Five

I have been invited on the STV 2 (Scottish Television) show; Live at Five.

So unless I am really unwell, or wee green men from outer space kidnap me, I will be on tomorrow Wednesday 4 April.

I will be talking about the One of Fifteen Campaign and Malignant Myopericytoma.

You will be able to watch STV2 via:

Freeview 8 Sky 117 Virgin Media 159

Please tune in tomorrow if you get the chance and please let me know how you thought it went.

Best wishes


Published by One of Fifteen

I am 1 of only 15 people worldwide diagnosed with maligant myopericytoma. Life threatening surgery in October 2015 at the Royal Infirmary Edinburgh saved my life. I am now trying to find the #14others diagnosed with this rare form of cancer. Please help me.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: