A Diary of A Mesowarrior Living With Mesothelioma. A Busy Week and Looks Like a Busy 2016


Saturday has come around again and I have had a busy week. The Social Media is always busy and i spend my time on the computer chatting to newly diagnosed Patients a lot. The find me mainly through my blog and I try and get them into our Mesowarrior Community but some do not trust Facebook so we converse via emails.

I dont mind just so long as I guide them to the right hospitals and the right trials.

It is very hard when they want my drug keytruda and the trial is not here yet but the TRAPS trial at St Barts is having such good results with the latest Warrior getting 42% shrinkage. Its so exciting to see that as it gives others the hope and boy we need hope.

I did ask the question in Q&A — Seems to me we have many Mesowarriors who have scan Appointments can you list here when and we can support each other through them. I say this as Scanexity is working on me as I have an appointment Tuesday 26th and Im worrying and worked up in case last time was a mistake. So when is your appointment and are you worrying.

As usual the warriors took part and we have a great list of when the scans are so I can wish them luck on the day. We can send a hug and also share the results.

There has been much excitement over the BCAh Im receiving Jan 28th. I have sorted my outfit and Im all ready even ray has been buzzing about making sure he has a new shirt and his suit is all ready. We found a picture of the award 

My Brother sent me the Actual Announcement from the paper but we have the invitations now this makes it all seem so real.

The spring Cleaning carried on and I have thrown away so many clothes, net curtains etc etc I know Im going to regret it but they are all gone now.

We did manage a lovely walk in the sunshine around Seasalter to the beech on a couple of days. 

I have to start sorting out 2016 speeches and I have a interview with British Lung foundation to do about the Pathway from diagnosis to the first scan. I have gathered loads of info from the warriors again and i have my own story to tell.

There is such a lot to look forward to 2016 and my diary is getting many dates being taken over. I will make sure camping dates go in as well-I promise.

Stories that caught my eye this week 

http://thehill.com/blogs/floor-action/house/265226-house-passes-bill-to-reform-asbestos-lawsuits 

House passes bill to reform asbestos lawsuits

“What’s happening is there are people who are gaming the system,” Farenthold said. “We’re not asking for any more information than is normally disclosed in any sort of litigation.”

Advocates for asbestos victims and public interest groups argue that the legislation would allow scam artists and identity thieves to prey on victims of asbestos exposure who have filed claims with trusts.

“In this age of data breaches and instance after instance of hackers stealing personal information from secure sites, Congress should be doing more instead of less to protect people’s personal information,” advocates, led by the Environmental Working Group (EWG) Action Fund, said in a letter to House members this week. “Alarmingly, the FACT Act helps identity thieves by placing highly sensitive information in public databases.”

Linda Reinstein, the CEO of the Asbestos Disease Awareness Organization, contends that the legislation would create new hurdles for victims who are fighting for their lives.

“Asbestos victims go bankrupt because of the disease they fight,” she said. “Why would we want to delay compensation?”

http://www.preventcancernow.ca/canada-has-stopped-mining-and-exporting-asbestos-but-the-battle-to-protect-people-from-asbestos-harm-continues

Canada has stopped mining and exporting asbestos but the battle to protect people from asbestos harm continues

By Kathleen Ruff

My Kent Camping Friends -how often have we camped at this school http://www.kentonline.co.uk/…/n…/school-asbestos-risk-48874/

Representatives from the Williamson Trust pleaded guilty at Medway Magistrates Court – where it was heard asbestos had been uncovered during work at the Hundred of Hoo Academy, one of the trust’s schools, in 2012.

Facing the same charge was Mark Tucker, 51, director of MT & Sons Ltd, the firm contracted to carry out the work, who also pleaded guilty and was fined £17,000.

The Asbestos strippers know I love pictures of Asbestos today and where it is found but one of the best ones was this 

Great little find today

A reminder that Disc Brakes were made of asbestos and still can be found on Vintage cars.

DSCF9963AA

Rays Blog https://mesoandme.wordpress.com/

 

 

 

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One thought on “A Diary of A Mesowarrior Living With Mesothelioma. A Busy Week and Looks Like a Busy 2016

  1. We sure do need hope!
    Congratulations on your award for all of your hard work. I have been following your blog since my Father was diagnosed with Mesothelioma in October. Such a lot has happened since then, it’s all been so fast but we still don’t appear to have any answers in respect of the type of cells, the stage, the treatment available to him.
    He was referred to Mr. Waller at Glenfield as a potential surgery candidate, he had a keyhole investigation and was due to have a Pleurodesis but couldn’t because his lung didn’t fully expand. He did have a chest drain fitted and we were due to go to Glenfield today for the results and to find out about the cells, stage and treatment options. However, Dad was admitted to hospital on New Year’s Day with pneumonia and now has an empyema in his meso lung. He also suffered what we thought was a stroke or Bell’s Palsy just before Christmas but an MRI showed a lesion in his brain which has divided doctors. We’ve been told that the Meso is confined to his left lung yet some are saying it is a secondary tumour and others are arguing that it is simply inflammation, not related to the meso. They can’t do a biopsy because the lesion is so deep rooted, investigations could create more problems. Have you heard of anything like this before?
    As yet we haven’t had any treatment other than morphine and paracetamol- I don’t know how he’s doing it!!! His chest drain is opened every second day which gives him huge relief. There has been suggestion from the Macmillan nurse that Dad won’t be eligible for surgery now but again this isn’t confirmed.
    Dad is due to have a lung flush today, they are going to pump sterile water through his drain, although this may be put off until tomorrow due to the strike. I could go on for reams but I will sign off now.
    Thank you for all your hard work.

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