Awareness about mesothelioma was non existent until a few people who had drive, time and were indignant about the way their loved ones died raised holy hell and started doing something about it. In the UK that was June Hannock and Chris Knighton. In the States Mary Hesdorffer and Linda Reinstein, Australia Bernie Banton and Lou Williams.
Without these starting points and these wonderful people many of us today would still be left in the dark about this terrible devastating cancer.
With the www we had websites and they started to grow, with the introduction of facebook, groups were started, Jan Weston, Debbie Brewer, ADAO etc came to life. Being a later starter with facebook I only blogged and believe me it to took me years to work out how to create one!
Even with all the connections, support and help available between each other still we are still dying. We have lost a few of the recognised names in the past week, people who have helped spread awareness via interviews, newspaper articles and being there to help support others who are just starting out on the worst journey of their lives.
Janelle was only 37, a young mother - I feel that something has changed about asbestos, before it had a long dormancy period and was classed as an old man's disease in the UK. So if they worked from being 18 in the stuff and died at 60 that was 52 years the cancer had to grow. Janelle was 37, it doesn't make sense. I was 44 when diagnosed, I believe I was in contact with asbestos between 0 - 6 years old, Debbie was the same, although slightly older when diagnosed same contact age. Now people seem to be contaminated with a shorter dormancy period - Why?
On a different note, my physio was extremely painful yesterday and I suffered the whole afternoon and night. I didn't realise what a bad back was like until this, so I apologise if I have never been sympathetic to anyone in the past. He keeps telling me it will take weeks, how many weeks can I withstand this pain, it is getting to me. On top of the other meso pain I think I am crumbling.
Today is Helen's funeral, I hope her send off goes as well as Debbies. I wish I could have attended both but travelling to Plymouth in this condition then to Helen's would certainly have caused further problems.
At times I wish I was just back in my little bubble of blogging, then I only followed my fellow bloggers and kept in touch by email with my own meso circle, once we know more people it becomes harder dealing with the losses that occur. Yet then you miss out on meeting so many wonderful people.
Sorry the blog is disjointed, I guess that is how I feel right now. I hope Tess has a good last dose of chemo today and sets her up for a long remission, Mavis has another dose today, lets hope this unproven chemo works. To Linda & Steve, have another great time away and Amanda & Ray I hope you have a good walking weekend. To everyone out there, please stay pain free and meso free.