Living with Mesothelioma -My Diary- A Happy Day today –

MR Happy

A day that starts so quiet and yet gets more happier as it goes on is very good medicine.

First on face book a photo of  a rescue that have become friends in the centre.

Ready Ahhhhh

Photo: They think they're brother and sister. I think I'm in love.

I wish I could have this cute pair xxx

All us warriors put our comments on a published article where they say Asbestos isnt dangerous –why do these people say such things without checking their facts.

“The general public is very ignorant about asbestos, in that they don’t understand that they do breathe it from the ambient air outside every day,” Swain said.

We simply don’t breathe in concentrated levels of asbestos for prolonged periods, which is when the substance becomes dangerous.

“Typically those individuals that become sick as a result of it are those that have dealt with it day in and day out of their occupational exposure,” he added.

I only washed clothes I didnt work with it day in day out  –IDIOT!!!! Mr Swain.

http://www.krmg.com/news/news/local/asbestos/nSYRs/

My Comments is there with Debbies and Mary who is a Nurse practitioner in the US

My comment –Mr Swain you need educating in the dangers of Asbestos. All I did was wash my husbands clothes and cuddled him as he came home from work. I didnt work with asbestos I was 20 years old and at 69 I couldn’t breath and I was diagnosed with Mesothelioma.
It only takes one fibre to cause this dreaded disease.
Asbestos is a death sentence -incurable cancer has grown around the lining of my lung . I have endured 3 rounds of Chemo and it wont be my last as I fight to live.
Please go away and write the true facts of Asbestos as it is so sad to see someone so ignorant about Asbestos and that money and greed is still causing people to us Asbestos.

Gosh we are forever fighting a battle somewhere.

Ray wanted to get some wood -he has told the story of the window sill in his blog -and of coarse I was right it was damp. We had bought a damp meter and yes it bleep around the lump that appeared in the window sill. What I cant get over was the fact what we thought was a wooden sill it was made of compress cardboard. We at least thought it was going to be wood chip or MDF. Gosh dont they cheat nowadays. The days of real wood are gone in the building trade. Ray made my kitchen in real wood and any job he does he uses wood.

But at least it isn’t a serious problem as i thought it was rain getting in. We have had so much rain it never have surprised me. Now I have a lovely wooden window sill and he has promised me he will do all of them.

Lots of walking with Louis today I have had a good day. Then my friend Sonja said she had got booked into a good site for the weekend and I phoned and got in as well. We have been wanting to stay there all summer but it was always full.

Leo Bay

Lovely views over the river Swale. I will be able to write about it when we have been –excited.

I really love the fact my Grandson is now standing on his own two feet. Place to live, a good job, and is really happy.

Out with friends .

Dan on the left with all his Film making friends –the photo is by Natalie Taylor

You do worry for them don’t you but they all find a place in the world.

The rain is pouring down now –really pouring

Rays Blog http://mesoandme.wordpress.com/2012/10/11/thursday-17/

Living with Mesothelioma -My Diary- Nearly missed my flu jab

I didnt get dressed today for ages as I was shattered yesterday and had eyes on stalks by the time I went to bed.

So much googling and reading the screen all day wears the eyes out.

I chatted to friends and read my Facebook and then I read how people were having their Flu Jabs–I said to Ray we must be being missed we haven’t had an appointment yet.

Ray phoned and found out they have been doing it since SEPT !!!

The Receptionist said they will not be sending out appointments to save money, the last session 27th Oct I have just made it.

I wasn’t happy as that clashed with our going camping so Ray contacted another surgery and they found us an appointment on the 20th Oct —at the same surgery as the other appointment –crazy.

They said they had told us on an advert on the prescriptions — I don’t have prescriptions my chemist deals with the ordering of my pain killers.

I would have thought they kept a list of patients that really musnt get the flu as it would kill them.

I can raise this at my next meeting as a Patient Representative.

So Ray went to his exercise regime with the  Physio.

He came back with rather worrying news that his back is locking up (please read his blog)

It would seem that if the Physio manipulated his back the spine could snap –We were going to a Bone crusher –Ekkk!!! that could have gone so badly wrong.

So he now has to have his team meet and see where he goes from here.

Myeloma mesothelioma how alike the names are, Ray has started a great site where he is collecting info as we warriors do we have to now reach the people that would need such a site so he can be in contact with fellow sufferers.

http://ramos72.wix.com/a-myloma-journey#!home/mainPage

I made a lovely home made soup it tasted so good but was made by me cooking things left in the fridge, carrots, parsnip, tomatoes, mushrooms, and curry powder and any spices I had and an OXO.

I Liquidized everything and we eat some as I have now a lot left for tomorrow and the next day so I had better freeze it or we ill get fed up with it.

It was such a good day with the sun out so I suggested going to Faversham to give Louis a lovely play in the park.

There was a Fun fair set up but nothing going on as it is there for the Carnival on Saturday. Thats late in the year for a carnival.

Not a lot there so maybe they havent set it up yet?

We stopped at the farm shop on the way home and I bought all my fresh veg and lovely plums and raspberries.

The farmers wife is really nice and friendly and she helps me choose nice vegetables –my super foods.

Got back home and it was soon dinner time. I have been drinking a fab fruit juice made with cherries and apples, with my dinner and I had a great fresh salad with the beetroot, lettuce and vine tomatoes i had bought today.

A great day again.

http://mesoandme.wordpress.com/2012/10/10/wednesday-15/  Rays blog

Living with Mesothelioma -My Diary- Looking for Trials is a Minefield

Tankerton slopes (photo: Harold Wyld)

 

I have spent most of the day researching trials -we cancer patients have to search for our own as there aren’t many in the official Trials Gov.co

http://clinicaltrials.gov/ct2/show/NCT00513877?term=mesothelioma&recr=Recruiting&type=Intr&cntry1=EU%3AGB&rank=1

Linda Wride share this one with me that Steve was on and had 3 years of good time but he is now back into Treatment

I found the Royal Marsden Trials http://www.royalmarsden.nhs.uk/research/pages/clinical-trials.aspx

They have cancer trials going on

Clinical trials currently recruiting

But we have to have it pacifically for Mesothelioma

Then Linda sent me through the UK trails http://www.ukctg.nihr.ac.uk/search?query=keyword%3Amesothelioma+status%3Arecruiting&resultsfrom=1&resultsto=10&pagesize=10

Where I found the ADAMS trial which I wasnt suitable for http://www.ukctg.nihr.ac.uk/trialdetails/ISRCTN71601938

So I have been reading through and studying which can be used on 3 rd line Patient as my body has had so much treatment.

I had found this site this afternoon http://topdocumentaryfilms.com/burzynski-the-movie-cancer-is-serious-business/

and low and behold a Man asked if anyone knew of the documentary as it had been recommended to him so I was able to help share.

Burzynski is the story of a medical doctor and Ph.D biochemist named Dr. Stanislaw Burzynski who won the largest and possibly the most convoluted and intriguing legal battle against the Food an Drug Administration in American history.

His victorious battles with the United States government were centered on Dr. Burzynski’s belief in and commitment to his gene-targeted cancer medicines he discovered in the 1970′s called Antineoplastons, which have currently completed Phase II FDA-supervised clinical trials in 2009 and could begin the final phase of testing in 2011-barring the ability to raise the $25 million to fund the first one.

When Antineoplastons are approved, it will mark the first time in history a single scientist, not a pharmaceutical company, will hold the exclusive patent and distribution rights on a paradigm-shifting, life-saving medical breakthrough. Antineoplastons are responsible for curing some of the most incurable forms of terminal cancer. Various cancer survivors are presented in the film that chose his treatment instead of surgery, chemotherapy or radiation – with full disclosure of original medical records to support their diagnosis and recovery.

One form of cancer – diffuse, intrinsic, childhood brainstem glioma has never before been cured in any experimental clinical trial in the history of medicine. Antineoplastons hold the first cures in history – dozens of them. Burzynski takes the audience through the treacherous, yet victorious, 14-year journey both Dr. Burzynski and his patients have had to endure in order to obtain FDA-approved clinical trials of Antineoplastons.

However, what was revealed a few years after Dr. Burzynski won his freedom, helps to paint a more coherent picture regarding the true motivation of the U.S. government’s relentless prosecution of Stanislaw Burzysnki.

Why is it all such a fight -why cant we all share knowledge and work together, We patients watch and wait for the cure or at least good treatment, we havent got time to wait.

 

Im sorry its been very medical but thats my life  and has been for over 3 years now.

The sun has shone all day and we had a great walk as I needed to get out into the fresh air.

I sit in front of this computer to much but it is my lifeline to the outside world –it is full of so much knowledge and I seek it all out.

I spruced up my speech again but I will keep looking at it as I have not put in about trials and how hard we work at that.

So that’s another day flown by

Rays Blog http://mesoandme.wordpress.com/2012/10/09/tuesday-22/

Linda Wride writes a blog http://doingsomethingpositive.blogspot.co.uk/2012/10/pill-popping-cycle-1-day-2.html and here she describes all the medication we take when faced with Chemo.

It shocked me to see it recorded in such away as you just take what your given to the instructions your given.

It seems an age when I was on chemo as you have to forget it and just enjoy the 3 months of stable and pray you never have to go back on it, but of coarse you know you will.

I think Mesowarriors are the bravest people  I know-Bless them all. But also I honour the Carers as they bravely run around and take over running everything and being there when we need comforting, caring for and just listening.

 

 

 

 

http://www.kentcoast.org.uk/whitreculver.html

Living With Mesothelioma -My Diary- A lazy day and a walk with Louis

Im so glad I havent written my blog yet, as I have just received from Linda Reinstein of ADAO ,

http://vimeo.com/50683832  Trailer for the ABC TV mini-series, a political thriller of David and Goliath proportions about Bernie Banton’s struggle against asbestos multi-national James Hardie Industries. Watch the trailer and notice when a wife shakes her husbands cloths just as she washes them —I recognise that as that was what I did ????

This is the story of  Bernie Banton http://en.wikipedia.org/wiki/Bernie_Banton and has been made from the book  “Killer Company”

IT’S a real-to-reel transformation that will haunt the supporters of asbestos warrior Bernie Banton.

While the man who brought James Hardie to justice for exposing workers to mesothelioma lost his life to the disease in 2007, he has been reborn on the small screen.

Anthony Hayes, of The Slap, bears a close resemblance to Mr Banton in a new ABC mini-series,Devil’s Dust which began filming in Sydney this week. Mr Banton’s equally-determined wife Karen, who has given the two-part telemovie her blessing, is played by Fred Schepisi’s daughter Alexandra.

Ewen Leslie will star as ABC journalist Matt Peacock, who discovered the cancer link and wrote the book Killer Company,from which the series is based.

“I’m thrilled Bernie’s story is being told because asbestos illness is an issue that’s probably never going to be over,” Mrs Banton said.

http://www.dailytelegraph.com.au/entertainment/sydney-confidential/tribute-to-asbestos-campaigner-bernie-banton-in-devils-dust-mini-series/story-e6frewz0-1226313950743

I had a lazy day as we were shattered from yesterday but  feel back to normal tonight.

come with me on Louis walk in the lovely sunshine.

Up by the side of the church in a quiet estate

These are about £250,000 to buy

One tree in a garden

Louis had to have his taken of coarse

He was a great boy today as the dog that always barks at him as he passes and Louis barks at through the window as the dog passes and sets Louis of barking– got loose out of the house today just as Ray was coming up the road with Louis. OMG I thought there would be a fight but no Louis was so good and allowed him to fly past-he wanted to run with him but Ray said NO! and that was it Louis just watched as the dog ran to his master.

Looking down Faversham road as we turn to go back home

haha !!!Ray has taken me as I go and put my doggie bag in the bin like a good dog owner does

The local Church where they prayed for April today bless her

So thats was my walk today we took so many photos as the camera was playing up yesterday but outside it seems to be working well.

So we have had a roast dinner of turkey and are now waiting for Downtown Abbey

http://www.youtube.com/watch?v=2M3moEeErr8

Rays Blog http://mesoandme.wordpress.com/2012/10/07/sunday-22/

Living with Mesothelioma -My Diary- A rainy day at times and a sad day with a little girl missing

The sky this morning was shepherds warning —So red and boy was it right as it rained early this morning.

It did get a little better and we went out to buy the tickets from the Station for our visit by train, to London to the Mesothelioma UK conference

Whitstable train station

Mesothelioma UK Patient & Carer Day 2012

30th July 2012

7th Mesothelioma UK Patient & Carer Day 2012
Saturday 6th October 2012
Pullman Hotel London St Pancras

The objectives for the day are to give mesothelioma patients, carers, relatives and friends the chance to meet and share experiences with others affected by the disease, to raise issues and ask questions and to give up-to-date, unbiased information on treatment and care and clinical research.  Patients, carers, relatives and friends can attend the day free of charge and priority is given to these registrations.

Please do contact us on 0800 169 2409 if you need anything further.

Liz Darlison, Consultant Nurse, Mesothelioma UK

I love the conference as the Mesowarriors can all meet up for the day.

Jan Eagerton will be talking about her Mesothelioma experience and IATP Christine Winters will be talking about Asbestos training.

I hope someone talks about Trials.

From the station wet traveled to Hernebay to park up in a car park and went to buy a fresh loaf from the bakers and bread pudding for me and a eccels for Ray.

It was so nice walking looking in the shops but we had to buy a runner for the motorhome as the flooring was a little cold to the feet when I got up in the morning.

We found just what we wanted so we went back to the car happy bunnies.

All day long we have been watching the news of the little girl who had been abducted in Wales —so sad when that happens and we all are praying she is safe, so small at 5 years to be parted from her family in such a nasty way.

God keep you safe little one

The window cleaner came and did the windows and then it rained -Oh! dear what a waste that was.

RAYS BLOG http://mesoandme.wordpress.com/2012/10/02/tuesday-20/

Living with Mesothelioma -My Diary- A very wet day and we keep getting soaked

What a wet and horrible day. It didn’t just rain it poured down and created surface water on the roads.

We went out to buy a DVD machine at Tesco’s so I stayed out side and walked Louis. I was drenched by the time I got back to the car. I put a very wet dog in the back seat. Smelly wet fur  is not very nice.

The car steamed up, we had the windows open and the blow air and full pelt. What a day.

I came home and changed out of my wet trousers and made a hot cup of coffee. wow what a day.

The reason for the DVD is I have bought this DVD

Move it or Lose it: Exercise for Older People: Routine 2

I have had it playing tonight and it is lovely for exercising my body, as it concentrates on building the leg muscles so Im very happy with it.

What it should look like

Move it or Lose it: Exercise for Older People: Routine 2

What it does look like ha ha !!!

But it was fun although Louis kept bringing a ball to play with, I had to shut him out.

Poor ray has been putting the rubbish out and he is soaked again –not a happy chappie tonight

Downton Abbey has just started so i will have to go.

Photo: woo hoo! Ready and waiting.. :)

Love this Drama so well made.

So that’s it tomorrow is Hospital Day so I will write my blog as soon as I know the result.

Night night !!!

Rays Blog http://mesoandme.wordpress.com/2012/09/23/sunday-20/

http://www.youtube.com/watch?v=oTTy3CP-sBM&list=PLs2LMXRPgSM64UU9uy1O8vMA3StzeTxkR&index=4&feature=plpp_video

Debbie has done a very powerful Interview in the USA –very moving.

Living with Mesothelioma-My diary –Louis attackers have been told off and are under control.

Wehad a phone call early this morning from Gary our Local Policeman who said he had been going round to the house where the 2 dogs were that attacked Louis. he had left a note as the young man was out but he had seen the dogs that fit my description.

Later a phone call again he said the young man had phoned and agreed it had all happened and he was very sorry. he has put a baby gate up and will make sure they dont get out again.

He was deeply sorry so that’s it the episode is over. Hope it doesn’t happen again.

The day has gone along very quietly today and I have been working on the computer in Mesowarriors most of the day as we all swap info on the latest trials and treatment. We share our knowledge around the world together.

Went out for a walk as usual with Louis watched a little telly.

I cant believe what I was reading to day.

Drive puts China's Great Wall SUV to the test on some of the outback's toughest roads.

The importer of Chinese brands Great Wall and Chery could be forced to recall 21,500 and 2250 cars respectively that contain the potentially deadly material in engine and exhaust gaskets.

The recall would affect almost all of the vehicles sold by the two brands – among the cheapest in their respective categories – since they went on sale here in 2009 (Great Wall) and 2010 (Chery).

The importer of both brands in Australia, Ateco Automotive, has known about the issue for “a period of months” and has been working with various government departments including Work Cover and the Australian Competition and Consumer Commission to determine a course of action, which is expected to be announced within days.

Despite the sensitivities surrounding asbestos – known to cause asbestosis, mesothelioma and lung cancer – it is understood some of the asbestos gaskets may not be replaced due to the complexities with replacing them and the likelihood many will never need replacement through the life of the vehicle.

Instead customers and the service industry may be instructed on the safe disposal and removal of components if and when necessary.

Ateco is refusing to speculate on what course of action will be taken, saying it is “waiting on the final ACCC ruling” and that it will comply with whatever measures are required.

http://news.drive.com.au/drive/motor-news/exclusive-chinese-car-asbestos-scare-20120814-246a8.html

How can this happen into days knowledge and todays Industry.

We are left still fighting a world wide ban.

Rays Blog http://mesoandme.wordpress.com/2012/08/14/tuesday-14/