Living With Mesothelioma -My Diary- The Reaction and Answers to my blog yesterday –so what are the answers


Well my blog yesterday has shocked me in the reaction it got.

I had so many comments on Face Book and private messages telling me I had got it right.

I will list a few —

So true if only they would put more effort into finding a cure. Your are an amazing woman that I am honoured to know even though we started off talking due to tragedy I feel blessed that your there and also know there’s a lot of us that are there for you also whenever you need us.
The work you do is amazing your an inspiration xxxxxx

 

Mavis I hope first of all it helped you putting it down on paper. A really heartfelt piece of writing well done. It makes us all take stock. We are here to support you as you do for us. Much love today xxx

 

Such an excellent informative Blog Mavis —definetley worth printing & keeping inside a book I have . It painted a clearer,broader picture of the Realities of this terrible disease than many would imagine. Books I have read which were Chapters long don’t cover the food for thought like your Blogs. May 2015 find much more Funding for Research. Good to read through concerted effort of you & others the BLF have obtained Funding from Aviva Insurance Company. I am always in awe of all you achieve xx

 

My Queen Mavis, you have contemplated, no doubt discussed, and put pen to paper, you are not the acknowledged Queen of the Mesowarriors for nothing. Your words are considered and wise, well done my friend. xxxxx Mavis, I have known you now for 5 years, I love and adore you ….. but most of all I respect you, what you have written is spot on!You old wise fox, you have turned the tide!!!

 

Thank you Mavis, your expression of anger is not just words because you are taking action as well. I am inspired and by you to continue educating others because your words ring true. It feels like you are saying the things that my father felt and said. Unfortunately his battle was lost too early. He enjoyed 69 years on this earth and I learned a lot from him. Thank you for reminding me of my father;)

 

Well said Mavis. It is very easy to take offence to something posted on these sites where no offence was intended. It is very hard to write supportive messages or helpful comments without offending someone. Keep up the good work!

 

Well said. Such a frustrating thing yet you’re fighting your own illness while fighting for everyone else too. You are fab x

 

Well said Mavis, think you have more friends than enemies with your words. Keep up the good fight. xxx

 

Excellent Diary entry Mavis —Would have liked to print it out but somehow I don’t seem to be able to

 

It’s an amazing account of what you’ve done for Mesothelioma and all the time coping with the disease. I take my hat off to you. I’ve tweeted & hope some of the businesses that follow me as well as everyone else will read my first tweet of what it is like being a Meso patient. Well done. Xxx

great stuff Mavis that’s exactly what It’s like

 

 

Mavis can you post to my time line thought of mesothelioma patient you have a talent for writing i hope you know this you are a amazing woman

dragon flies for ray

 

I did have an excellent one from a dear friend in Holland. She has been with me through all my this journey on here in my Cyber world

Putting all one’s eggs into one basket is risking a complete fail. You write: “There is so much money being spent on data collection travel and hotels etc etc etc etc, that I keep sitting there thinking if only this was all going into research.” I understand your sentiment and know and appreciate where you’re coming from – you know I do. Yet it seems to me that research grants for medical laboratories to find a cure are dependent on statistics, on increasing public and politic awareness to prevent future victims, on policy to make the right choices and allocations, on motivated doctors, on media to make big noises, indeed on very many aspects to which many people of all backgrounds contribute. They all need each other in many different ways to co-operate in unity to achieve their mutual goals, that is to say to find a cure and realise prevention to future exposure and disease. Funding laboraties to the complete detriment of these other efforts would be fruitless, for then the need for funding would not be understood and funding would dry up for lack of interest, sense of urgency and understanding. If these people don’t communicate, which they may need to do in person to learn from each other – and hotel stays and conferences make that possible – then each country would be trying to rediscover the wheel all over again, to the detriment of asbestos victims worldwide. Which is a very sad thing, considering that we all share the same asbestos problems, regardless of which country we live in. We must learn to share solutions, actively and unitedly, so that we may together find the best one as quickly as possible in order to achieve our mutual goal of banning asbestos all the sooner and with it, preventing asbestos diseases. It takes many approaches, not just the one. And sadly, they all require funding to be effective and by their efforts also support the other approaches.

Im so grateful she sat and thought with me and we meet up next week in Birmingham so we can discuss this further.

Yvonne is heading for her first Conference and I hope she carries forward my thoughts and hers and makes everyone think and remember the Patient that is suffering with this dreadful disease.

I hope they think and help make this a safer world.

The first European Asbestos Forum

The European Asbestos Forum aims to improve professional networks and the exchange of knowledge regarding all matters related to asbestos.

For 2015, the main theme will be focused on labour: remediation, best practices, limit values, raising awareness in the workplace, national and European policy, enforcement of regulations, comparing regulations, asbestos drama’s and major law suits etc. The newest medical and some shocking new epidemiological insights will be shared as well. Convivial closing drinks and an optional conference dinner will round off the day in style.

http://www.europeanasbestosforum.org/

.

Global top speakers 27th May 2015

This event will provide a stimulating environment to discuss the challenges facing us in raising awareness about the dangers of asbestos in the workplace, how to manage these and how to prevent future victims. There will be some twenty internationally renowned speakers and representatives from all stakeholders, such as remediation firms, employer groups, labour unions, governments at all levels, researchers, medical experts and victims groups from all corners of Europe and beyond.

Here we have someone at the beginning of sharing,  with her country, knowledge and its this first feeling that so many of us have started with. Thats what Im asking that we all get that first feeling back and rethink

So all in all I was pleased I had sat and thought, it seems so many have joined me –Thank you so much now maybe we can move forward together and find the money to research the cure for Mesothelioma.

Mesothelioma research at the BLF

 

I wish the British Lung Foundation good luck in getting then Insurers to invest in Research.

Two insurance companies – Aviva and Zurich – have agreed to donate a combined £1 million over two years to our mesothelioma research programme.

On top of the money we already invest, we will be able to fund an additional £1 million worth of ground-breaking research, of the kind we hope will one day discover new treatments or even a cure for mesothelioma. use this link to send a request to your MP  http://blog.blf.org.uk/…/huge-step-forward-mesothelioma-re…/

Then we have to sort the Asbestos story out. I don’t know the answer here –its to huge and expensive a problem.

The true answer is to pull everything down and eradicate Asbestos from our lives. We cant do that of coarse but we could start to have houses surveyed so that we are aware our homes are safe and if it is around us. If Houses are rented or bed and breakfast (a business in some way) then HSE Duty to Manage comes into it.

The ‘duty to manage’ asbestos is included in the Control of Asbestos Regulations 2012. You are a ‘dutyholder’ if:
you own the building; ■■
you are responsible through a contract or tenancy agreement;■■
you have control of the building but no formal contract or agreement; or■■
in a multi-occupancy building, you are the owner and have taken responsibility ■■for maintenance and repairs for the whole building.
What buildings are affected?
All non-domestic buildings, whatever the type of business. ■■
The common areas of domestic buildings, eg halls, stairwells, lift shafts, roof spaces. ■■
All other domestic properties are not affected by the duty to manage.

They could add houses that we live in to this very easy, from little acorns and all that jazz.

http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCYQFjAA&url=http%3A%2F%2Fwww.hse.gov.uk%2Fpubns%2Findg223.pdf&ei=gMDEVOSDONKS7AalvIDQBg&usg=AFQjCNGkMtNkHhtVmag_82earGA5FnsyNg

Well its been a very educational weekend for me thank you so much for sharing with me

 

 

 

 

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