Two years on....

Well Steve, we have reached the second anniversary of your death. Your last Valentine to me has pride of place on the mantelpiece, as it did last year and the year before.

I was stirred yesterday morning by bright sunshine slanting through the blinds and it took a few seconds to wake up properly before the significance of the date kicked in.  I confess I shed a tear on reading lovely messages from friends who also remembered this anniversary.  

However, it wasn't all sadness.  Daughter Katie joined me at lunchtime, and we walked, talked and dined together and toasted your memory.  She has returned to London this morning, so a chance to finish this post to mark the second anniversary of loosing you. 

Unlike last year, the run up to this anniversary has not been nearly as stressful.  Maybe its because I’ve been through many of those “first time without you” experiences and survived, even though its been difficult at times.....such as when I walked out of a Cuban music evening barely able to hold back the tears - the only person trying to salsa without a partner - remembering how much we enjoyed dancing together....

While the Steve-shaped hole in my life is still there, the void is slowly being filled with new experiences of living as a single person.  

I’ve carried on our grown up gap year, traveling far and wide over the last 12 months: Namibia, Scotland, Portugal, France and New York City, as well as getting out and about in the UK, meeting up with old friends, making new friends and enjoying some quality time with our grown up kids along the way.

The camera has been my companion on these travels, and photography is still proving to be a creative and social lifeline, as it was when you were alive and going through treatment.  For some reason, a few days ago I was flicking through old photos of our travels together, and I came across this one of you in Spain, at the memorial to those innocent people who lost their lives in the Madrid train bombings back in 2004, before you were diagnosed with terminal cancer.  The image has taken on a new significance now, watching you walk away from me in the darkness, but towards the light flooding in from above.  Sadness and hope at the same time.

I’m still in touch with the Meso Warriors - mainly those who have lost their loved ones to mesothelioma - but also the amazing Mavis Nye who was diagnosed with the disease around the same time as you but is now in remission after taking part in an immunotherapy drug trial which has given hope to so many.  Mavis has even started up her own charity to help others in her position and their families.  I was honoured to be invited to the launch and to take some photos to record the launch last December.

People like Mavis and Linda Reinstein in the States (who runs the Asbestos Disease Awareness Organisation) have my utmost admiration for the work they do.  I sometimes feel guilty that I’m not more actively involved in mesothelioma awareness advocacy, especially now this blog is only updated infrequently.  However, people still read it from time to time, and I’ve had nice messages from those who have found it helpful, including a lady who had no idea what to expect at the Coroner’s Inquest but didn’t find it quite so scary after reading about my experience on the blog, so I guess that’s a contribution in some small way....

The idea of creating a public artwork as a permanent memorial to you has moved forward another baby step, with discussions about its form (a "human" sundial) and location in what will be a little pocket park next to the Thames at the Osney Lock.  However, its taking a while to get lottery funding for the overall landscaping scheme, and there is no sign of anything happening on the ground as yet. Hopefully, some time over the next 12 months, the project will reach fruition, or at least take another step forward....

Who knows what the next year will bring to me, our family and the wider mesothelioma community?  It will be interesting to look back in 12 months time to find out.  Until then - your memory will not fade away.... 

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 blog Living 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!  

It 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).  

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?

 Read the local press article here!

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!