Shortly after Steve was diagnosed with mesothelioma in June 2009, a friend in Plymouth sent us a press cutting about Debbie Brewer - a fellow mesothelioma sufferer who had achieved good results with a treatment called "chemoembolization" at a German clinic. We googled Debbie by name, made contact and were delighted when she responded quickly, full of encouragement, helpful information and support.
Although I had joined Facebook at the end of 2007, the account lay dormant until August 2009 when I posted a link to this blog which was found by another carer, Heather, whose husband had mesothelioma. That started the world of "virtual friends" ball rolling for us....
I'm not sure when we became part of the facebook meso warriors and others associated with the disease and raising awareness of the dangers of asbestos. However, Debbie was instrumental in starting up and/or introducing us to the various groups in the UK and overseas (especially in Australia and the USA), and now the news from these groups and their individual members are part and parcel of our daily lives.
Along the way we have found fellow meso bloggers and have got to know them and their families in the virtual world - Mavis and Ray in Kent, Tess also in Kent, Jan "up north", Amanda and Ray in the home counties, Lou and Steve in different parts of Australia. We follow the blogs and the postings in the groups, riding the roller coasters of each other's lives, sharing the good times and trying to offer what support we can through the difficult times. The good thing about the virtual world is there is usually someone there 24/7 if you need a shoulder to cry on or some words of support and encouragement.
Sadly many of the meso warriors, including fellow meso bloggers, have succumbed to the disease along the way - Julie Bastian and Anita Steiner in Australia, Ronny White and Debbie Brewer in the UK. It's heartbreaking but, at the same time, inspiring to read their last few blog posts and to see how courageously they and their families managed to hold things together in very, very difficult circumstances, sometimes aware of - and at peace with - the end of their time approaching, others fighting to hold on to life as long as possible. We felt for them all....
Sometimes we have the chance to get together with virtual friends in the real world. It's amazing how easy and rewarding it feels to meet face-to-face after you have been involved with each other's lives online. We have wonderful memories of meeting Debbie for lunch whilst staying in the west country a couple of years ago. We've enjoyed meeting others at the Meso Patient and Carers day events in London and more recently, Leicester including fellow bloggers Mavis and Ray in 2011, and Tess and Alan this year.
Although we have been part of the meso communities on Facebook since 2009, it wasn't until October 2011 that I started to get involved socially with fellow photographers who posted images on the same websites as me. I think I was afraid of having to explain to people who only knew me through photographic images, how our lives were totally unpredictable, dictated by the constraints of living with an incurable cancer and rarely looking beyond the next hospital assessment - at most three months into the future....
In the end, I poured it out in a post on my occasional photo blog (read it here ) and put a link to the post on the website where I had been regularly sharing my photos. And then I started accepting friend requests from fellow photographers who, by now, had some idea of where I was coming from.
In the same way that virtual friends in the meso community had become real friends, we began to meet up in the real world with photographers who had previously only been a name below a set of images. Giuseppe in Rome last February and more recently in London; Marisol in Madrid earlier this year; and a group from 1X.com in London a couple of weekends ago, including some who know about Steve's cancer and others who do not. It's been wonderful to put names to faces and enjoy good company!
By the time I post again, we will have enjoyed meeting up with some more of our virtual photography friends in a place we will be visiting for the first time. Another adventure and more names we can put animated faces too in the real world!
In the meantime, here's a virtual hug for all our virtual meso warrior friends especially those who are going through tough times and for all our other friends - virtual and real world - who we hope we will see again soon, before scanxiety sets in as the date of Steve's next assessment approaches in December...
Now to finish packing!
Although I had joined Facebook at the end of 2007, the account lay dormant until August 2009 when I posted a link to this blog which was found by another carer, Heather, whose husband had mesothelioma. That started the world of "virtual friends" ball rolling for us....
I'm not sure when we became part of the facebook meso warriors and others associated with the disease and raising awareness of the dangers of asbestos. However, Debbie was instrumental in starting up and/or introducing us to the various groups in the UK and overseas (especially in Australia and the USA), and now the news from these groups and their individual members are part and parcel of our daily lives.
Along the way we have found fellow meso bloggers and have got to know them and their families in the virtual world - Mavis and Ray in Kent, Tess also in Kent, Jan "up north", Amanda and Ray in the home counties, Lou and Steve in different parts of Australia. We follow the blogs and the postings in the groups, riding the roller coasters of each other's lives, sharing the good times and trying to offer what support we can through the difficult times. The good thing about the virtual world is there is usually someone there 24/7 if you need a shoulder to cry on or some words of support and encouragement.
Sadly many of the meso warriors, including fellow meso bloggers, have succumbed to the disease along the way - Julie Bastian and Anita Steiner in Australia, Ronny White and Debbie Brewer in the UK. It's heartbreaking but, at the same time, inspiring to read their last few blog posts and to see how courageously they and their families managed to hold things together in very, very difficult circumstances, sometimes aware of - and at peace with - the end of their time approaching, others fighting to hold on to life as long as possible. We felt for them all....
Sometimes we have the chance to get together with virtual friends in the real world. It's amazing how easy and rewarding it feels to meet face-to-face after you have been involved with each other's lives online. We have wonderful memories of meeting Debbie for lunch whilst staying in the west country a couple of years ago. We've enjoyed meeting others at the Meso Patient and Carers day events in London and more recently, Leicester including fellow bloggers Mavis and Ray in 2011, and Tess and Alan this year.
Although we have been part of the meso communities on Facebook since 2009, it wasn't until October 2011 that I started to get involved socially with fellow photographers who posted images on the same websites as me. I think I was afraid of having to explain to people who only knew me through photographic images, how our lives were totally unpredictable, dictated by the constraints of living with an incurable cancer and rarely looking beyond the next hospital assessment - at most three months into the future....
In the end, I poured it out in a post on my occasional photo blog (read it here ) and put a link to the post on the website where I had been regularly sharing my photos. And then I started accepting friend requests from fellow photographers who, by now, had some idea of where I was coming from.
In the same way that virtual friends in the meso community had become real friends, we began to meet up in the real world with photographers who had previously only been a name below a set of images. Giuseppe in Rome last February and more recently in London; Marisol in Madrid earlier this year; and a group from 1X.com in London a couple of weekends ago, including some who know about Steve's cancer and others who do not. It's been wonderful to put names to faces and enjoy good company!
By the time I post again, we will have enjoyed meeting up with some more of our virtual photography friends in a place we will be visiting for the first time. Another adventure and more names we can put animated faces too in the real world!
In the meantime, here's a virtual hug for all our virtual meso warrior friends especially those who are going through tough times and for all our other friends - virtual and real world - who we hope we will see again soon, before scanxiety sets in as the date of Steve's next assessment approaches in December...
Now to finish packing!
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Have fun and raise a glass or two for us. Hopefully chemo will be doing it's job and both Ray's and Steve's scans will be good news in December
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