Living With Mesothelioma -My Diary – Filmed BBC SE News for my thoughts on the Saatchi Bill

I have so much to write but Linda has written a very comprehensive Blog today and as Im tired as it has been another full day of Interviews Im using her as a Guest Blogger  

First though I will say that I woke up today to a phone call. Did I know I was in the local paper. I didn’t know of coarse so Ray got up and bought the Kent Gazette. The Interview I did yesterday was there.
Then I had a tweet from BBC SE and Simon Jones wanted to interview me. So great come along and they turned up at 12.30pm. We did the filming and tonight it was on BBC SE at 630pm.
We are very pleased with it and Lord Saatchi is even in it so he will be pleased. We are waiting for the link on iPlayer
Brian of Verastem emailed to say ——Wow! You are amazing Mavis. The BBC?! I overheard somebody talking on the street today about this story they saw on the TV about mesothelioma…must have been your and Dean’s interview. So very well done!—–
So that is my busy busy day!!!!
  The Interview of Ray and I xx
So here is my guest blogger as it is how another Mesowarrior sees me. Steve Wride started the Journey the same time as I did. He has had different treatment to me and is now on the Vansel Phase  Trial which is a Phase I trial so I cant go on it –Thats what Im fighting about WHY NOT ???

  • Vandetanib is a VEGFR (Vascular Endothelial Growth Factor Receptor) and EGFR (Epidermal Growth Factor Receptor) inhibitor; VEGF is a substance made by cells which helps new blood vesssels develop and grow. VEGR inhibitors stop cancers developing the blood vessels that they need to grow
  • Selumetinib is a MEK (Mitogen Activated Kinase) inhibitor which blocks the pathway along which signals are sent to cells telling them to divide and grow
Doing something positive: Mesothelioma, the media and Mavis
There are some organisations with high profiles which are very good at grabbing media attention, but it is rare to find the eye of the media turning towards an individual blogging away on a small scale and at much more personal level.
You can bang on for years, trying to raise awareness about something important, but generally the only people who listen are family and friends, and those with a specific interest in the subject you blog about.  As far as the national and international media are concerned, you do not exist.But there are exceptions to that generality and one of those is fellow meso blogger, Mavis Nye. Mavis writes a daily blogLiving with Mesothelioma (link on the right) which has attracted attention far beyond her wide circle of friends in the mesothelioma and motor home communities.  Likewise, the number of people following @grandmamavis on Twitter is rising steadily.Mavis works really hard at reaching out to people.  I don’t know how long she spends each day sitting in front of the computer sending and reply to e-mails; posting and commenting on Facebook in groups and private messages; writing tweets; publishing her daily blog and such like, but it must be a long time – she is so productive!pm has paid off in the past, with features in the local and national press, but recently Mavis has hit the national media big time.  Back in January, she was interviewed on the BBC Politics Show, talking about the new Mesothelioma Bill.  She was recently invited to tea with the Director of Corporate Development of Verastem Inc, a major American drug company which is working on the COMMAND clinical drug trial here in the UK.

More recently, and at his request, she found herself sitting beside Lord Saatchi at the first “Google hangout” televised in the House of Lords on Monday to launch the Saatchi Bill (Medical Innovation Bill).
Lord Saatchi’s Innovation Bill


She then went on to give interviews to the press and TV. Quite a celebrity :-)No wonder she was awarded the Asbestos Diseases Awareness Organisation’s Alan Reinstein Award for her commitment to education, advocacy, and support to countless patients and families, and the Independent Asbestos Training Providers (IATP) Meso Warrior Award in 2013.  Where can she go from here, I wonder?

Mavis has what we need to raise awareness of this awful disease.  Someone who is living through it, helping others all the time while she desperately seeks the answer to the question what next for herself?  Mavis has already had four chemo regimes and her “Mr Nasty” is growing again, albeit slowly according to her last scan back in December 2013.She has exhausted all the usual options but is still willing to put herself forward for innovative treatment, so is a prefect person to help front the Saatchi Bill campaign!

I usually dedicate blogs to meso warriors with a heavy heart as it is a way of saying goodbye. Yesterday, we said goodbye to another warrior, Ernie and our thoughts and sympathies are with Dot, his wife, and their family and friends.

But rather than use today’s post to say goodbye to another brave warrior, I’m delighted and proud to dedicate this post to someone who is still full of life and determination.  Well done Mavis, meso warrior queen!

Thanks Linda that is very descriptive of my life this week.
I don’t sit all day on the computer honest. I just check in the morning and then at dinner time. then again in the evening.Honest xx

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