Living With Mesothelima-My Diary- Saatchi Bill will be further debated on Friday (December 12) in the Lords.

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The run down to Christmas is underway now as the panic sets in.

My Brother has phoned and we will doing our annual present swap next Saturday. Thats when I know it is almost here.

We have been getting the Motorhome ready, new batteries are in as ray has been doing that today.

Presents are all bought wrapped and I have sent the final posted ones. The cost of postage is so dear nowadays.

We have done well selling the Calenders but we would like to raise more money for The June Hancock Research Charity.

The weather has been very cold and blowy and we now have a new word in the weather forecast.  Storm Bomb.

BBC weather presenter Carol Kirkwood said it would be a “wild” day from north Wales northwards, while it would be “blustery” further south.

Explosive cyclogenesis – known colloquially as a “weather bomb” – is when a storm intensifies as the pressure at its centre drops rapidly (by more than 24 millibars in 24 hours).

The storm currently affecting parts of the UK formed in this way.

Ferocious seas have hit the coast of the Orkney Islands

Speaking from Barra in the Outer Hebrides, Donald MacLeod, coxswain of the island’s lifeboat, said there was rain, hail and “plenty of wind”.

He said the storm had “grown through the night”, adding: “The swell conditions are pretty bad to the west – it’s showing about 14m (45ft).”

Here in the South the wind has died down and we had a sunny but cold day. It allowed us to go shopping for a new TV. We have bought a larger one. I took the dog for a walk while Ray went in and looked at what was going and then I joined him. It looked huge in the shop and after struggling to the and from the car to get it in doors, it doesnt seem that large at all.

Back in the warm again I got on and cooked dinner while Ray set it all up.

A advert that I think saves lives is this one.

be clear on cancer lung campaign

Please dont let your love one keep coughing and not visiting a GP to sort it out. This last year we have educated GP’s to what Mesthelioma symptoms are. They have a check list for when a patient presents

themselves to the surgery coughing or breathless.

It might be something so innocent but it could be something naughty.

Envirochem Laboratories have posted on Face book some Interesting facts of Asbestos in Schools
 
Asbestos in UK Schools. A quite interesting image from Spencer Solicitors. It is becoming a fight to rid our schools of Asbestos.

It is time the problem is resolved. More than 75 per cent contain asbestos.
Fourteen thousand schools were built after the second world war and
almost all those built before 1975 contain asbestos. Most of the other
schools that were refurbished during this period also contain asbestos.
The materials of greatest concern are those that readily release asbestos
fibres such as asbestos lagging, sprayed asbestos and asbestos insulating
board (AIB), all of which are present in schools. Asbestos is not only found
in lagging in pipes and boiler rooms, it was also sprayed on ceilings and
structural beams or used extensively in the construction of schools in
walls, ceilings, heating baffles, window and door surrounds, with much of
it in locations that are vulnerable to damage by children.

The MRC report assessed lifetime asbestos exposures and estimated the
numbers of asbestos fibres inhaled by a child during their time at school
with the asbestos being in good condition. It concluded that every day,
background asbestos fibre levels in schools are five to five hundred times
greater than outdoor levels. The report stated “Children attending schools
built prior to 1975 are likely to inhale around three million respirable
asbestos fibres … Exposure to asbestos in school may therefore constitute
a significant part of total exposure.”

It was discovered in 1987 that slamming a door just
five times released levels of amosite fibres more than six hundred times
greater than background levels, despite the fact that the AIB panels
around the door appeared to be in good condition. As no warning was
issued to the thousands of other schools with potentially the same
problem, the release of asbestos fibres continued

Committee that a reasonable estimate is that in Britain between 200 and
300 people will die each year of mesothelioma because of their asbestos
exposure experienced as a child at school in the 1960 and 1970s. Over a
twenty year period that means that between 4,000 and 6,000 former
pupils could die. Although asbestos is generally managed better now it is
also older and most of it remains in place, therefore increasing the risk of
fibre release and exposure. So long as the exposures continue, then so
will the deaths.

Inspections carried out over the last five years have found flaws in
asbestos management in a number of schools that have required advice
and enforcement action to be taken. Common faults include a lack of
asbestos awareness and poor standards of training; asbestos
management plans found to be ineffective; confusion over areas of
responsibility; and the less accessible asbestos has frequently not been
identified because of inadequate surveys. A report by the Asbestos
Consultants Association, ATAC, concluded that the systems of asbestos
management in many schools are ineffective and at times dangerous.
They stated: “These are not minor problems that have crept in over
recent years; rather they are fundamental problems that are endemic in
schools in the UK.

I will leave you to continue to read the report but there is a great problem that must be looked at properly.

There is to much talking and not enough sorting and the problem grows and grows

https://www.teachers.org.uk/node/14963

The Saatchi Bill. will be further debated on Friday (December 12) in the Lords. Slowly it moves forward.

http://medicalinnovationbill.co.uk/medical-innovation-bill-adjournment-debate/

Yesterday December 10, 2014 Sarah Wollaston MP was granted leave to hold an adjournment debate on the Medical Innovation Bill.

The Bill team were also invited to meet Dr Wollaston earlier in the week to discuss the Bill. We thank her for that meeting and for requesting the debate.

During the debate Dr Wollaston raised several important points about the Bill, which could formally come to the Commons in early January.

The points revolve around patient safety and scientific rigour – issues which have been raised by senior doctors and lawyers in the House of Lords and which have been discussed with peers in committee and in bilateral meetings with Lord Saatchi, health ministers Earl Howe, George Freeman and Department of Health lawyers and officials.

On the back of these meetings, amendments have been laid which address the issues raised, and they will be further debated on Friday (December 12) in the Lords.

Chief Medical Officer Dame Sally Davies and NHS chief Sir Bruce Keogh, who has inputted into the Bill himself, remain satisfied that the Bill is robust, safe and will enhance, not hinder scientific research.

Summing up in favour of the Bill, Minister George Freeman said:

‘I want to close with some supportive quotes the Bill has received from a number of important people, lest the House should form the view that it is unanimously opposed, which is not the case.

 

Dame Sally Davies, the chief medical officer, has said:

“I am confident that, with the amendments made in Committee stage, the Bill is safe for patients and has the potential to encourage responsible innovation.”

 

Sir Bruce Keogh, at NHS England, said:

“Encouraging innovation in medicine and protecting patients are both of vital importance. That is why I am pleased that amendments have been devised to address concerns about patient safety.”

 

Sir Michael Rawlins, president of the Royal Society of Medicine, said that the Bill will allow responsible innovation and treatment:

“I believe the use of the provisions in the draft Medical Innovation Bill will benefit patients, especially those with rarer diseases, and the furtherance of medical science.”

 

A letter to The Telegraph from 40 leading medical professionals, including David Walker, professor of paediatric oncology at Nottingham university and Riccardo Audisio, the president of the Association of Cancer Surgery, said the Bill

“legally protects doctors who try out innovative new techniques or drugs on patients when all else has failed. This Bill will protect the patient and nurture the innovator. It will encourage safe medical advancement, while at the same time deterring the maverick, thereby recalibrating the culture of defensive medicine. Finally, it will work with evidence-based medicine and provide new data that will inspire and support new research.”

I hope very much that that is the case and that when the Bill leaves the House of Lords, the vast majority of qualified senior opinion in this field is able to agree with it. It is absolutely our intention to support the Bill’s noble intent to promote medical innovation, but equally our intention is to not undermine in any way the Government’s commitment to patient safety or the duty of care that all clinicians share and owe to their patients.’

→Read: The full text in Hansard 

Rays Blog

http://mesoandme.wordpress.com/2014/12/10/wednesday-108/ 

 

 

 

 

Living with Mesothelioma –My Diary –So many Red Berries does this mean a freezing white winter ???

Fancy colorful animated table clock gifFancy animated carved wooden wall clockCoo coo clock with bird

 

The clocks went back so it is always strange when you get up and realise its an hour earlier than you thought it was doh!!

It was lighter outside and a very sunny day so that was great but then you realise it will be darker earlier –not so good.

I looked out and my path was all dried out and did look very clean, after the wash down yesterday.

Before

After

We had an email from very dear friends to make arrangements to met up in 2 weeks before they go to the Bahamas for the winter so I was very excited about that but they sent photos they took Of our time at Malvern together.

Two happy cowgirls xx

I adored the Indians they gave a reenactment and told tales with the sign language as well -so very gentle

Louis all ready and waiting for his walk

Ray had to go to the Dentist Technician –yes on a Sunday weird but true. So I got on and had a good tidy up and cleaned the windows inside as the window cleaner is coming tomorrow.

When Ray came home we had a walk with Louis and suddenly we were amazed at all the berries on people’s bushes.

So many berries does this mean a very cold snowy winter ??

Walking past our church we could see it has a boarded up door and wonder if there had been a break in last night.

Shocking if that was the reason.

We had a brunch and worked then on the computer all afternoon but did manged to watch country file and a  film.

I cooked a roast for dinner and we have just finished that.

Relaxing evening watching the results of Strictly and X factor just waiting for Downtown Abbey of coarse.

Rays Blog http://mesoandme.wordpress.com/2012/10/28/sunday-25/

 

 

 

 

 

 

Living with Mesothelioma -My Diary– the Waverly came to town

I slept in till 8am -that was great but it means by the time you get up and have breakfast then shower the morning is nearly gone.

The weekend must have been wearing us out ha ha !!

I did have fun but enough to make me sleep 9 hours is unheard of.

I did the housework so Ray could get on painting the windowsill.

washing caught up with and out on the line –I felt good. Today has been a good day.

Off we went to Tankerton slopes and gave Louis a good long walk. We sa the Windfarm as it was fully in the sunlight.

We could hear a ships horn going really loud but we couldn’t see a boat that was responsible.

We walked round to Tankerton High street and then back onto the seafront and there was the Waverley Kingswear Castle coming out of Whitstable Harbour.

She is such  a sweet boat.The last paddle steamer on her way to Hernebay.

The PS Kingswear Castle is a steamship. She is a coal-fired river paddle steamer, dating from 1924 with engines from 1904. She now runs summer excursions on the River Medway and the Thames. Kingswear Castle is listed on the National Historic Fleet, Core Collection of ships of “Pre-eminent National Significance”.

http://en.wikipedia.org/wiki/PS_Kingswear_Castle

The last Apartment is to be sold in my Favorite building site which over looks my special Tankerton slopes –wouldn’t Louis be happy here running out of here each morning and chasing the seagulls.

Then straight down onto the beach for a swim. The only thing is the winter north wind blows in so cold and lashes the rain down hmmm maybe it wouldn’t be a good idea.

We are now tucked up in the warm all snuggly and happy.

I received a great email from cancer research

David Cameron announced a new ‘radiotherapy innovation fund’ this week. He’s making £15million available to the NHS in England so that by April 2013, more cancer patients can benefit from advanced radiotherapy like intensity-modulated radiotherapy(IMRT).

The money has become available because the Government’s Cancer Drugs Fund – set up to make new cancer drugs available to patients who need them – is under budget.

So between now and April 2013, radiotherapy centres in England will be able to bid for this money to boost their services. The Prime Minister also guaranteed that from April all patients in England will always be able to access the radiotherapy treatments that their doctors think they need, including advanced radiotherapy such as IMRT or stereotactic radiosurgery, regardless of where they live.

This is fantastic news, for several reasons.

http://scienceblog.cancerresearchuk.org/2012/10/11/government-radiotherapy-announcement-is-fantastic-news-for-patients/?utm_campaign=ccm_octsolus151012&utm_content=84618791124&utm_medium=email&utm_source=Emailvision

Thats great news but us warriors must now make sure it comes to Mesothelioma.

Rays Blog http://mesoandme.wordpress.com/2012/10/15/its-monday-4/

Living with Mesothelioma -My Diary- The end of a lovely weekend x

Well Im home and settled in after having such a great weekend it has been wonderful.

After going to bed late again last night we woke up to the sun shinning through the heiki I knew it was going to be a good day.

I made our coffee and took Louis for walk but he just wouldnt go for a wee. All he did was sniff the grass, gosh I hate him when he does this, such a frustrating dog at times.

Then we went off for a walk into Queensborough,  A land Rover came by and the occupants were waving madly at us and shouting at hello!!! and then I realised it was the Site Owner Stephen. he stopped and asked us where were going, so we told him for a walk. He gave us instructions to walk to Queenbury harbour and left us with, if you get to tired phone and I will pick you up. How sweet was that. He has been the perfect host all weekend.

We have been enthralled with the views this weekend, with the way the colours have changed as the clouds have come over and the sun keeps appearing and disappearing. There are geese on the water and birds in the sky. Ships siren have blown and their engines sounding as they pass by.

We walked until I got tired and then came back to the site where I cooked Sunday breakfast, by this time everybody was awake and out so we sat around by the Motorhome’s chatting the rest of the day.

It came to where we just had to say goodbye –you have to say it sometime.

Thanks everyone for a relaxing happy weekend.

Rays Blog http://mesoandme.wordpress.com/2012/10/14/sunday-23/

Info for my Brothers as they read this blog — Tess my friend and patner in meso crime has written

I was given some interesting figures this week by my oncologist. They have been analysing data relating to mesothelioma patients diagnosed with the disease between 2010 and 2012 in my health authority.
In this time 170 new patients have been diagnosed with pleural meso ( a rare disease????)
Between 40%-60% got to first line chemo and it only worked for approx 25% of these patients.
Of those getting through first line treatment only 17 patients got to receive 2nd line chemo. They have no figures beyond this. Patients may not get to first line chemo because: they are diagnosed too late for treatment; are too unwell to receive treatment; choose not to have chemotherapy treatment; or sadly die before ever getting to the referral stage.

http://tessgully.blogspot.co.uk/

This is making me feel very nervous as I must be in an even lesser figure that have had  3rd line and when it grows again I will be in an even lesser figure to that to have 4th line –my odds are getting smaller xxx

Im just amazed that out of 107 —17 had second line. I would have thought the figure would be higher. I would love to know all the reasons why the others didnt have Chemo. Also as the Medway towns would be in this figure and only 107 have been diagnosed in 2 years when meday was such a hot spot. The Dockyard closed so some would have moved out of the area I suppose!!

Thanks Tess for telling us though.

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 -Disneyland coming to Kent WOW!!!

What a boring wet day so much rain —http://www.youtube.com/watch?v=n65SsZP1TaY

I know I wanted to have a rest after the weekend but not this much.

I have managed to write my speech though for November so Im glad that is out the way, I now have to time it and make sure I don’t rush it .

Exciting news tonight that they are trying to build Disney land in Kent right by Dartford crossing so baring planning permission it looks good for jobs for people as they build it and then when its open and up and running in 6 years.

Computer generated image of proposed entertainment resort

The site of what was once Europe’s largest cement works is to be turned into a giant, Hollywood-style theme park to rival Disneyland Paris.

The brownfield land in Kent, close to where the remains of the 250,000-year-old “Swanscombe Man” were found, could rival the

Olympic Park for the scale of its job creation and local regeneration

A £2bn entertainment resort which would aim to rival Disneyland Paris could be built in north Kent.

Developers have been granted a licence from Paramount Pictures to use its name on a resort on the Swanscombe Peninsula, near Dartford.

The scheme has been offered “support” by Dartford and Gravesham borough councils.

The site’s developer, London Resort Company Holdings, is now looking for further investment for the project.

It estimates the park, which would be based on a former cement works, would create up to 27,000 jobs.

The 900-acre brownfield site is next to Ebbsfleet International station, which is 17 minutes from London and two hours from Paris.

http://www.bbc.co.uk/news/uk-england-kent-19867695

I did take Louis for a little walk in the rain and now we have a very bored dog on our hands.

I cooked three chops

In walked Louis licking his lips ha ha !!

Please Mum hurry up !!

So Louis had a lovely chop but I poured sweet and sour sauce on ours.

So that’s the day gone and apart from a wonderful chemo tinnitus ear and an earache today Im fine.

I hope tomorrow is dryer.

ha ha !! Debbie has just put this photo on Face Book –he had a whale of a time and it was lovely to see him laughing with the girls xxx

Photo: Naughty ray you tricked me : )

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