Why I made a music video for PMP

I’ve always loved that Billy Joel tune, ‘We Didn’t Start The Fire’¹. As a music producer myself, for a long time I’d been thinking how cool it would be to record my own, adapted version of the song.

At the same time, in the two years since my MOAS² I’d been thinking about ways to raise awareness of PMP. I’d done a bit of fundraising myself here and there, but I really wanted to do something bigger. I wanted to do something collaborative to allow other survivors and supporters to get involved in a fun and positive way.

As I was rewriting the lyrics to Billy’s song (updating them to cover major events and popular trends from the last 25 years since the original was released), it occurred to me that there was an interesting juxtaposition between all the well-known and widely publicised phenomena I was writing about – such as iPads, selfies and Facebook – and the world’s lack of knowledge of PMP…

And then it hit me: why not get PMP survivors to help create a music video for the song? What if we all worked together to create something that would inspire other PMP patients, deliver them a message of hope, and help them realise there is support out there for them? The more I thought about it, the more it made sense. Videos are great for sharing, and sharing means helping to raise awareness.

Thanks to the Pseudomyxoma Survivor Facebook group, I had access to a big network of PMP patients, carers and other supporters from all around the world. All people needed to take part was a video camera and an internet connection. I wrote a message on the Facebook group to see who might like to contribute and put together some instructions for them on how to record a clip for the video and send it to me.

I ended up with around 25 clips, featuring over 100 people in total from all around the world – a mix of PMP patients, friends, family members and other supporters. It took around four months in total to get the piece finished — much longer than I’d anticipated! — but it’s been very rewarding, and the result is a really fun and heartwarming video. It’s is a true celebration of survival, with everyone singing and dancing and looking like they’re really enjoying themselves.

Dawn and Angela from Pseudomyxoma Survivor (who feature in the video, dancing around like loonies!) helped me with publicity and technical issues – and also introduced me to Sean Hepburn Ferrer, son of Audrey Hepburn and patron of the charity. He kindly took part in the video too (see if you can spot him!) and has helped us spread the word.

The video is on YouTube and at the time of writing this has received over 3,300 views. My hope is that in future, anyone given a PMP diagnosis and who goes online to research the disease will stumble across our video, watch it, and have their spirits lifted a little – by seeing that you can survive this thing, and there is help and support out there for you.

 

 

Being told you have a very rare and serious disease can be a very scary and isolating experience; I hope our video goes a little way towards helping alleviate that for people given a PMP diagnosis.

Jenny

 

Jenny

Jenny is 35 and lives in Bristol. She had her operation for pseudomyxoma peritonei (PMP) in November 2012 and has made a full recovery. She edits a blog about fundraising and makes music for video games.

 

1. Joel, Billy. “We Didn’t Start The Fire.” “Storm Front.” Columbia, 1989.

2. MOAS – mother of all surgeries, a term used to describe cytoreductive surgery and HIPEC.