Im getting very worried about the damp air here by the coast. The Marshes are so wet around us that at night we are getting condensation on the outside of the windows and the frames of the windows and doors are soggy wet every morning. Mind you it makes cleaning the car easy as we wipe it down each day with a cloth.

There has to be bad fog somewhere with so much moisture.

My cough just wont go away and Im so frightened that it might be damaging my lung. Im passionate about protecting my lung all the time. It isnt wheezy and does seem clear now and anything I cough up has gone clear so there isnt any infection. Its just been so embarrassing in meetings and the fashion show Wed night. Cough cough cough.

My tablets do work and I have had a good sleep last night.

Yesterday I managed to change the bed without any dizzy turns so that is good if my blood sugars had got stable again.

Photo: Happy Thanksgiving to all of you wonderful people out there.  We all have something to be thankful for.  Even the smallest things.  If you don't think you have something to be thankful for, put your hand over your heart and feel that.  You DO have something to be thankful for. Enjoy your turkey tomorrow....enjoy your family.  Be Blessed!

Yesterday our US friends celebrated thanksgiving. I cant imagine having turkey before Christmas like that and Im so surprised we n the UK have not joined in and copied as we do everything else.

Each year on the fourth Thursday in November, Americans gather for a day of feasting, football and family. While today’s Thanksgiving celebrations would likely be unrecognizable to attendees of the original 1621 harvest meal, it continues to be a day for Americans to come together around the table—albeit with some updates to pilgrim’s menu.

The meal often includes a turkey, stuffing, potatoes, cranberry sauce, gravy, pumpkin pie, and vegetables. Thanksgiving Day is a time for many people to give thanks for what they have.

There were lots of photos on Face Book of pumpkin pies.

Something we are copying from the US Black Friday where all the bargains can be had in the shops and on line. That will help the Christmas present budget.

For millions of people Black Friday is the time to do some serious Christmas shopping –even before the last of the Thanksgiving leftovers are gone! Black Black is the Friday after Thanksgiving, and it’s one of the major shopping days of the year in the United States -falling anywhere between November 23 and 29. While it’s not recognized as an official US holiday, many employees have the day off -except those working in retail.

The term “Black Friday” was coined in the 1960s to mark the kickoff to the Christmas shopping season. “Black” refers to stores moving from the “red” to the “black,” back when accounting records were kept by hand, and red ink indicated a loss, and black a profit. Ever since the start of the modern Macy’s Thanksgiving Day Parade in 1924, the Friday after Thanksgiving has been known as the unofficial start to a bustling holiday shopping season.

In the 1960’s, police in Philadelphia griped about the congested streets, clogged with motorists and pedestrians, calling it “Black Friday.” In a non-retail sense, it also describes a financial crisis of 1869: a stock market catastrophe set off by gold spectators who tried and failed to corner the gold market, causing the market to collapse and stocks to plummet.

https://blackfriday.com/pages/black-friday-history

I keep mentioning Steve Wride (we were diagnosed together) -I would like to mention him today as he is starting a coarse of radiotherapy to ease the pain of the Mesothelioma breaking through the chest wall.

He will have to go to the hospital so many times for the treatment so I hope it doesnt tire him to much.

My love and hugs go to him

Hugs For You

And to all the Mesowarrior community who need a hug right now.

Rays Blog http://mesoandme.wordpress.com/2014/11/27/thursday-105/

For the people that read my blog in the Medical field, I have found this to be very interesting

UK Clinical Research Collaboration establishes new National Tissue Directory and Research Collaboration

The Medical Research Council is pleased to announce on behalf of the UK Clinical Research Collaboration (UKCRC)* the establishment of a National Tissue Directory and Coordination Centre, led by University College London in collaboration with Nottingham University.

The new Centre, will receive approximately £900k for a period of three years, from a consortium of UKCRC funders, including British Heart Foundation; Cancer Research UK; Chief Scientist Office (Scotland); MRC; National Institute for Health Research/Department of Health; Health and Social Care Research & Development Division, Public Health Agency, Northern Ireland; National Institute for Social Care and Health Research (NISCHR)/ Welsh Government; and the Wellcome Trust.

Professor Brian Davidson, UCL lead for the New Centre for National Tissue Directory and Research Collaboration said:

“The new National Tissue Directory and Coordination Centre will develop a resource finder which will enable researchers to discover, search across and contact multiple human tissue and biosample collections through one system. We hope that this coordinated approach and the guidance provided will improve the harmonisation of standards and best practice associated with the collection and governance of tissue samples in the UK.”

Professor Stephen Holgate, Chair of the Evaluation Panel said:

“The new Centre will help to ensure the medical research community maximises value of human tissue samples and resources while minimising duplication of effort. The Centre will support the UKCRC Experimental Medicine Funders Group’s vision by supporting better characterisation of samples and increased linkage to accurate clinical data. Thus, making sample collection more easily discoverable and accessible for use in high quality research.”

Christopher Birkett, Head of Regulation at the Human Tissue Authority (HTA) said:

“Researchers have told us that the HTA has raised standards for the storage of tissue, leading to better research outcomes. The successful partnership of HTA and the HRA on the Research Tissue Bank scheme means that high quality tissue for research has never been more accessible to researchers. Building on the regulators’ successes in improving research quality, accessibility and transparency, we welcome this new initiative, and look forward to working with Professor Davidson to support it.”

For further information or if you have any questions or queries about this new Centre please contact: tissuedirectorycall@headoffice.mrc.ac.uk

http://www.mrc.ac.uk/news-events/news/uk-clinical-research-collaboration-establishes-new-national-tissue-directory-and-research-collaboration/

 

I had a great time last night at a fashion show at our local Church Centre .

http://www.whitstablelionsclub.org.uk/

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We arrived very early to set up my Asbestos Awareness stall as it was surprising how much info I have collated together.

I had our Calender and my book and lots of pamphlets like Take Five etc etc

We had been invited to receive a £1000 Cheque for Mesothelioma UK as the local Lyons raise money through boot fairs and other events for charities, and from the amount of people that came to my stall and spoke to me they knew all the dangers of Asbestos.

Younger people hadnt realised it was still a danger so I focused on Asbestos in School and although I hadnt prepared a speech, I did talk about young school children being in danger.

I pushed that all parents should ask to see the Asbestos Register.

A lady came to me afterwards and took loads of pamphlets to pass to her family and to question me about schools. She is going to do her own fighting on the subject she said. I said to Ray if we reach just one person I will be happy but we seemed to reach the whole room.

A Mesowarrior did come along so we met for the first time after talking so much on Face Book it was lovely to meet her and her Dad. Her Mother, who has Meso didnt come as she is going to her first Chemo today so I know how worried she is but at least I have shown the family that you do get through Chemo and come out the other side to enjoy life again.

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And so the show started and I was at the end of the runway.

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Lovely clothes and lovely models but one stood out.

 

She was an ex dancer at the Windmill in London and she stole the show as she danced.

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She really was such fun to watch.

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Local men even took part and they looked real dapper in some really good clothes.

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It was just a brilliant night and the money raised was for http://www.abigailsfootsteps.co.uk/our-story/

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David and Jo were there to receive the cheque.

So wonderful the work the Lyons do I hadnt realised just how much x

Welcome to Whitstable & Herne Bay Lions Club. We are a charity formed in 1971 to help the community & part of the 105SE District. We are part of a larger family that covers the world, helping those that need it. We raise money by doing events within the local community and 85% of all the money we raise goes to help that community. The other 15% goes to help worldwide, such as the earthquake in Haiti or the Tsunami of 2004 where we provide local community with two replacement fishing boats.

The aim of the Lions is to help those less fortunate than ourselves. We are part of Lions Club International, the largest service organisation in the world with 1.4 million members in 46,000 clubs in 202 different countries. We are a huge family dedicated to ensure that every penny dropped into the collection bucket is used to help those in need.

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I had an email to clarify that Hospices are free to us and do not charge so I repeat it here so as to clear up my confusion

Thanks for passing your email address to Diane so I could contact you.
I am the solicitor who did the very brief talk on hospice fees and I just wanted to clarify matters for you.
Naturally, it was difficult to fit a complex subject into a five minute slot but it was felt that the issue was an important one to be included at the conference.
I read your very good blog and I notice you have mentioned about hospice fees.
The care provided by hospices is as you rightly pointed out, free to the hospice user.  
There is never any charge made by the hospice to the user, their family or their estate.
Hospices are usually funded partly by NHS contributions and partly by charitable donations.
English law recognises in mesothelioma cases that care and assistance provided free of charge by family members and friends, to the person with the illness, can be compensated by working out what it would have cost to do that help using a commercial care agency.
Therefore, we can recover damages for the care family have provided despite the fact no charge is ever made.
The case I mentioned extends this idea by allowing the Claimant, on behalf of the hospice, to claim some of the cost of the hospice’s services as an additional part of the Claimant’s claim despite the fact the hospice would never charge the Claimant, family or their estate for it’s services.
Accordingly, the Defendant pays for the Claimants needs!
The hospice is therefore able to claim back from the Defendant the cost of the care done by reference to how much of their income is based on charitable donations to give them additional fund to provide services.
The Claimant, nor their family or estate are ever at risk of paying anything at any stage as the hospices do not charge for what they do.
I hope this helps, do email or telephone me if I can clarify further.
With very best wishes to you,

 

 

I have attended a great Mesothelioma Conference today.

We got lost getting there but a lovely Student helped us and we finally found the venue at the Greenwich University Chatham Dockyard and was soon parked up.

We had coffee and signed in and then went to the conference room which was just like the student lecture rooms.

Pool Room, Small Lecture Theatre, Dental School

So we settled down to Dr Alasdair Stewart a Chest Consultant, Lung Cancer for Medway NHS. talking on Related Disease.

He said something I didnt know and that was that blue Asbestos is like a twig that runs through the veins smoothly but gets to the lung it has to turn and thats when it sticks.

Also 64% of people in 2007 had never heard of Mesothelioma and 32% not aware that asbestos caused cancer. I do hope that things have improved until now.

Another fact was that in Medway the average patient was over 71-80 and they dont know why that is.

I have seen so many Xrays that look just like mine it made me shiver every time.

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I really am a average looking patient.

Dr Andrea Oustaylannis a GP in Medway. talked about early recognition of thoracic malignancy in primary care.

A list of symptoms was put up but I didnt have any of them, well when I thought about it I did have a lump in my throat once and funny enough as I touch it now its gone, I did get a swelling on the left side of my face and thats not gone. I lost a lot of weight after I went on a Weight Watcher diet and when I got to gold I did say I was loosing weight still and went right down to 10 stone, when I retired. Im 5ft 9 ins so I did look very thin.

Pleural effusion diagnostic pathway issue of Tissue was next Dr Jay Hettiarachchi A chest Consultant at Medway gave his talk.

The most common conditions that result in effusions are cardiac failure, pneumonia, and malignant neoplasm. Diagnosis of a pleural effusion begins with obtaining the patient’s clinical history and doing a physical examination and is followed by chest radiography and analysis of pleural fluid in appropriate instances. If necessary, the process continues with further investigative studies, such as computed tomography (CT) of the thorax, pleural biopsy, thoracoscopy, and, occasionally, bronchoscopy.

The mesothelioma can be misdiagnosed as the seeding can be spaced out. Also a bi-op can be negative as they might not be doing that in the right area. they do keep the times down to get a result faster so the patient doesnt have to wait long for a diagnosis. This does get better year by year.

Dr Shar a medical oncologist in my team at Maidstone talked about the new trials. He is preparing one that is :-

Cisplatin + pemetrexed is the only licenced chemotherapy treatment for malignant pleural mesothelioma (MPM) based on the registration trial (Vogelzang et al 2003 Journal of Clinical Oncology 21(14), 2636-2644). There are no other licenced drugs with approval for use in this disease. In the UK standard first line treatment incorporates chemotherapy with either cisplatin or carboplatin (platinum) in combination with pemetrexed.

First line chemotherapy helps to prolong survival but unfortunately it is inevitable that the cancer will start to progress again. Many patients in this position will be fit for chemotherapy, however there are no licenced second line chemotherapy drugs. This puts clinicians and patients in a difficult position. Vinorelbine is a chemotherapy drug that is often used as a single agent in the second line setting within the UK. It is relatively well tolerated, available in an oral formulation and affordable (by the standards of many new cancer drugs). Unfortunately the data supporting its use in this setting is limited and it remains unlicensed.

There is an extensive anecdotal experience suggesting that rechallenge with platinum and pemetrexed is active in the second line setting with acceptable toxicity, however this has never been tested in a formal randomised clinical trial.

We propose conducting a randomised phase III clinical trial in patients with malignant mesothelioma. The patients will already have had first line chemotherapy with cisplatin/carboplatin + pemetrexed and shown evidence of clinical benefit. Our definition of this will be patients in whom chemotherapy has controlled their disease for 6 or more months.

Many of us didnt realise that they dont use the same chemo in 2nd line. I dont think it matters what they use so long as we the patient can tolerate and if we get stable or shrinkage that is all that maters.

He talked about all the trials we know about even my own MK3475 that not all patients have no problems as diabetes can start and I have heard this infact I have had trouble with a dizzy spell that they have found my sugar levels do drop.

http://onestopmesothelioma111.weebly.com/maps-of-trial-centres.html Please check for trials here.

Mr Loic Lang-Lazdunski Professor in Thoracic Surgery http://www.londonbridgehospital.com/LBH/consultant-det/professor-loic-lang-lazdunski/

He says each patient should be sent to see if they would be suitable for surgery and so I so wish I knew him 6 years ago. I was stronger then and he does operate on older people.Taking the linings or the whole Lung out.

Lynne Squibb told her story of her fathers journey with Mesothelioma and why she started HASAG. A very inspiring story.

http://www.hasag.co.uk/

November 2004 started in the usual November way, coughs and colds were rife so none of us were particularly concerned when we all went down with it too..

December and January passed and we had all recovered except Dad.

Mum spent the whole of January nagging him to see the doctor and finally at the beginning of February 2005 that appointment was made.

The doctor confirmed that there was fluid on his lung and instead of the antibiotics we were expecting, his lung was drained and he was diagnosed with Mesothelioma.

Dad was always a fit person, at 71 years old he had never learnt to drive and so would regularly walk into Eastleigh, the nearest town.

He also walked down to the village shop every morning to collect his newspaper, but what he had neglected to tell us, was the increasing breathlessness he was experiencing.

Dad had spent his whole working life at Eastleigh Railway Works and many times he had spoken about the continual exposure to asbestos. He would also talk about the increasing numbers of his work friends who were being diagnosed with what we only knew as ‘asbestosis’.

He took early retirement during 1995 and was determined to enjoy the new leisure time he had gained.
Dad loved genealogy and taught himself how to input all the information onto his new computer. He was a very active person, loved Bowls and would always have his sleeves rolled up, whether it was doing DIY for all his family or pottering around in his beloved garden.

As you can see from the link they have a great support group and put together great conferences.

Meothelioma Uk nurses Denise Hodges and Ann Moylan  spoke next on a My Group dear to my heart. There are great Support Groups out there if you google.

Dr David Oliver a Consultant in Palliative Care spoke about the Wisdom Hospice and all the great work they do.

The Wisdom Hospice was opened in 1984 and was named after Molly Wisdom who raised money for a hospice in the Medway area, even though she herself was dying of cancer. Following her example the Friends of The Wisdom Hospice were able to raise the rest of the funds to build the Hospice. The Wisdom Hospice is now run by the Palliative Care Services of the Medway Primary Care Trust. The Friends of The Wisdom Hospice make an annual grant to the Medway PCT of £587,000 towards the running costs of the Hospice (approx 1/3). Additional funds have been made available for increased medical and nursing staffing and for a Benefits Advocacy Worker. In addition the Friends fund the hairdressing service and chaplaincy at the Hospice and provide extra equipment and facilities that do not fall within the PCT budget. To provide extra care for patients in their own homes, annual grants are made by the Friends to Crossroads and the Marie Curie Nursing Service. In 2004 a £1.3million refurbishment and extension project at the Hospice, funded by the Friends, was officially opened by TRH The Earl and Countess of Wessex. The Friends of the Wisdom Hospice relies on the support of the community to maintain and extend the services provided.

They do wonderful work within the hospice for end of life.

Asbestos and the Law had a panel of Solicitors talking to us About claims that was very interesting and also about the new Mesothelioma Law.

A person of 69 will get £131,493 Pay out + £7,000 for the cost  for a solicitors fees but they dont charge that so the patient can keep the balance.

We were told they are in Mesothelioma because they do care that Asbestos caused such a terrible illness and to be honest I truly believe that as they talked passionately about their job and their patients and what one of them did for a recluse who lived in totally rubbish that was spread throughout his house. They had the rubbish cleared and the man then lived in a really lovely and clean house for the rest of his days.

A little bit perplexed that one said that the Hospice claim back from a persons estate the cost of a stay in a hospice. I didnt know that and on searching I come up that treatment is free so I have a bit of research on that to do.

Dr Stewart closed the day then on how we can improve the outcomes.

I like the idea of Regional Centers where all the expertise is in just a few main hospitals so they condense it all. The Marsden works like this now and I love it. Ok we have to travel but you have all the answers in one place.

Your Gp would be able to email when a patient presents themselves with difficulty breathing and they would be accepted straight into hospital and avoid A&E.

Rays Blog http://mesoandme.wordpress.com/2014/11/25/tuesday-119/

 

 

 

It was a special weekend in front of us as we had an invitation to Plymouth to a special 18th birthday. Kieran (Debbies Son ) It was something I just had to attend as Debbie was so proud of her son and we had promised her we would see him on the birthday where he would now be a man.

I had always told Debs that she would be there to see it but of coarse I was so wrong. There is no cure for this disease and we all fall under the finishing line at some point.

Sp here I was going to Plymouth on the train after dropping Louis off at my sons. Lovely people at Slough station that were so happy and helpful then at Reading we couldnt find anyone and couldnt understand the time table and no one about in a huge Station. I ended up going down the escalator and no Ray behind me then he appeared at the top shouting at me to come back.

We finally got on a train and hour late.

Arriving at Plymouth after a long journey. (we saw the part that runs right along the sea front and that the sea had smashed down last winter)

The sea was rough as we came through but lucky not that rough.

My friend Angela was in the station and she was waiting for Kieran to meet us so we went ahead to the hotel and they joined us in our room.

We went out for a meal

Next morning we got up and went

for a walk around Plymouth.

We had a meal out

We had a meal out

Saw the wedding cars in the garage

Saw the wedding cars in the garage

 

 

 

 

 

 

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Kieren said –I forgot to say I’m going to see Mrs Brown live at the o2 in London next summer!! I’m so excited, thanks to everyone who came together and did this, you’re all the best!

We had all clubbed together to pay for 2 tickets for Mrs Brown at the O2 and  hotel room so he can take a friend

It was soon all over and we got the taxi back to the Hotel. But I was there and fulfilled a promise to my friend debbie.

Rays Blog http://mesoandme.wordpress.com/2014/11/24/monday-105/

 

 

Been a busy day today getting ready for a trip to Plymouth for a party Saturday night.

Clothes all ironed and packed so they will get screwed up in the case.

We wrapped all the Christmas parcels that have to go in the post so they can go to the post office tomorrow.

Got pressies to take with us to our Sons so he can put them under the tree. We are so ahead I hope this continues.

Doctor from The Royal Marsden phoned and asked if I heard from St Georges and did I know my result of the Hormone test.

I told him I haven’t so he said he would chase it.

Report stage for the Medical Innovation Bill is set for December 12th 2014.
I wish them luck I want to see the Bill through. It is Essential for Terminal Patients and to forward innovation for rarer cancers and other illnesses.
Great Letter from my MP Julian Brazier
So pleased he answered my email
I know through my Doctors how hard everyone is working to get things moving forward all the time.
So a political day today as well.

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It was a very sleepy Mavis that got out of bed 4.30 this morning. This is getting harder as the winter goes on. Dark mornings and going to the Marsden is getting harder.

I have to tell myself that that is why Im still alive I have to make sacrifices and giving up my warm bed so early is one of them.

Ray walked Louis up a dark lane that is still a bit flooded.

We have had so much rain that everywhere is so dripping wet.

Anyway off on the motorways and in with all the other traffic we sped. M2, M20, M26 and M25 we sailed through and got there at 8am.

I was called in early but then Sister said oh sorry I forgot I have to go to a new trial meeting so she left me in the capable hands of a young nurse who weighed me blood pressure and urine test.

Bloods taken meant I could go back to the waiting room and wait for the Doctor.

A new Doc put his head round and called me. Im getting used to the rota the Doctors do so as to all be able to study each patient.

We talked about my cough and he prescribed Carbocisteine tablets

http://www.patient.co.uk/medicine/carbocisteine-mucodyne

Mucolytic medicines, such as carbocisteine, can be helpful for people with a long-term respiratory disease such as chronic obstructive pulmonary disease (COPD).

Carbocisteine works by making mucus (phlegm) less thick and sticky, and therefore easier to cough up. It may also have a knock-on effect of making it harder for bacteria to cause chest infections.

It needs to be taken regularly, and is most likely to help if you have moderate or severe COPD and have frequent or bad flare-ups.

Im so grateful for these as I have taken 2 so far and they have really drained the Mucus that not only has given me a bad time with the virus but also with the Mucus a Meso patient has due to a bad lung.

He also chatted about St Georges and that the Hormone test result wasn’t back yet.

He also discussed the last  scan and to be honest I don’t quiet understand. He said that shrinkage now that it is over 50% as long as the trend continues on its present coarse of reduction. They dont need to measure –hmm I don’t see that. I like to know the measurements. Or is it that it is now on its way to nothing. Wouldn’t that be brill.

Next scan is January 2nd.

He gave me the best physical examination of all the doctors. A very thorough young man, lots of banging of my chest and listening as I breathed in and out. My chest is clear of any virus infecting it.

Then he listened to my tummy through the stethoscope. I laughed and said “oh don’t please I have the loudest tummy.” He laughed and said the sign of a healthy gut.

So that was it we had to wait for the bloods result and then the drug is made. This is the boring part. We had coffee and a cake read the paper and a magazine.

Ray went to sleep.

I people watched and chatted to other patients.

Finally at 1.30pm I was called in to have my wonder drug.

First they had to draw of the 3 phials of blood for my DNA trial that done 30 mins of being fed my wonder drug through my PICC line and then a 5 min flush. It was over.

Im all topped up again and my Miracle drug is in my veins –I love it MK 3475 do your work.

We love it when we leave through the doors out into the fresh air.

The journey home was no problem only that we drove into rain after we had watched a sunny day through the windows.

I came home to the sad news that we had lost a lovely Mesowarrior

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Rays Blog http://mesoandme.wordpress.com/2014/11/18/tuesday-118/

 

 

 

 

 

 

 

 

I have had a better and quieter day. I haven’t coughed to much and so I feel Im coming back. I don’t want that to happen to much. I was frightened when I couldn’t breath.

It has been a very drab day anyway but I did go out with Ray and Louis and bought a lovely pair of black shoes for all the parties and dancing we are going to over Christmas.

So much planned that I said to Ray just open the diary each day and deal with one day at a time or I will panic.

I have bought a new wardrobe of clothes so that it I will pack our case tomorrow as we have a 18th birthday to go to. A very special young man. I will be meeting Debbies son at last.

It has been a very thought provoking day today as our daughter would have been 5.3 today. We have missed do many wonderful years that should have been filled with lots of fun and laughter, weddings and grandchildren have all been denied to us.Oh life is so cruel at times.

Christines Story Misadventure or Misjudged

This is my account of my 16 year old daughters tragic death at the hands of an irresponsible 15 year old boy.

My disgust at the Coroners verdict.Could more have been done to bring the culprit to justice?.

http://www.lulu.com/shop/raymond-nye/christines-story-misadventure-or-misjudged/ebook/product-17357980.html

Do you know I feel like I have been fighting for justice all our lives. Christine and then Asbestos and Mesothelioma why is life so hard.

Her 13 birthday dance with her dad –we miss you baby xxx

Rays Blog http://mesoandme.wordpress.com/2014/11/16/sunday-105/

Well I have found out what having a chesty cough is like with a damaged lung.

I have been sounding like i smoked 100 fags a day a true smokers cough.

This virus has really pulled me down but on going to bed last night for an early night the coughing really got underway. I could cough out but couldnt breath in again to do the next cough. Phelgm came up and could only go through my nose. My airway was completely blocked.

Gradually it got better for me to be able to breath again. Thia went on all night and I really thought I ought to phone the hospital. I did drop off but then awoke again but I was still here this morning. I have often wondered what it was like to have a damaged lung and a cold -well now I know. Lucky I had a good cough medicine

I try had not to cough and I have rested this morning and had a shower so I feel human again.

So I will carry on resting although I have been involved in a heavy discussion about The Saatchie Bill.

The hhttp://www.bbc.co.uk/news/uk-england-essex-30066641ead lines for hospitals isnt very good this morning

Inspectors from the Care Quality Commission have declared a major incident at Colchester Hospital

Still in trouble’

“We’ve had a year, eighteen months of problems at Colchester General Hospital, the former chief executive, chairman and numerous members of the board have all gone, there’s a new team in there and I’m hoping that they will turn it around.

“There’s no criticism here by the way of the front-line medical staff and support staff, the criticism I have is the management historically and I’m just hoping the new management team are going to sort it out, but clearly this is very worrying.”

Elderly patients and dementia sufferers have been ‘restrained unnecessarily’ and given ‘inappropriate sedation’ at a hospital where health watchdog inspectors have declared a major incident, it has emerged.

A ward at Colchester Hospital, in Essex, has now been closed to new admissions after inspectors from the Care Quality Commission (CQC) found it was struggling with “unprecedented demand”, with patients being urged to got to it’s A&E department only if they have a serious or life-threatening condition.

But it is understood that serious concerns were also raised by CQC staff about the inappropriate restraint, sedation and inappropriate resuscitation of elderly people, some of whom were suffering from dementia.http://www.telegraph.co.uk/health/healthnews/11232953/Patients-inappropriately-detained-at-crisis-hit-Colchester-Hospital.html

And a very sad case http://www.mirror.co.uk/news/uk-news/dying-husband-kept-hospital-store-4625397

A grieving widow has slammed a hospital after her husband died in a store room because of a lack of beds.

Beryl Matthews, 66, was furious when cancer sufferer Tony was moved into the cramped room, which has no windows.

She says the retired builder was forced to choose between a “glaring fluorescent light” or darkness as he lay dying of mesothelioma.

When Beryl asked nurses for an extra pillow she was told there were none available.

The grandmother-of-three said: “I was told they hadn’t got enough beds and so they had to convert store cupboards to make another bedroom.

They really have got to sort out our over crowded hospitals it cant go on this way. A&E must mean just that EMERGENCY ONLY. We have to build up walk in clinics to take the pressure.

Rays Blog

http://mesoandme.wordpress.com/2014/11/15/saturday-99/

 

We were very shattered from the 2 trips to London and then I couldnt sleep. So much going around my head at the moment.

I did power nap Ray just conked right out bless him.

We got some frsh air and walked Louis at Tankerton and I did catch up on the washing and wrapped some Christmas presents.

Then last night an instant sore throat and runny nose has bought a virus. I do worry as I have to us hand rails and toilets and I see germs everywhere, you know they are there dont you as you travel where thousands have traveled before you.

Lots of warriors are traveling to Australia to the first Asbestos Safety Conference.

The Mesowarriors have come a long way together around the world and people work tirelessly for Mesothelioma the disease from Asbestos exposure.

We have the Medical  field and Scientists, MP.s and so much more who are dedicating their life to the disease and how to find that cure. You can never say no money is spent (maybe not enough but thats the same in any disease)

We Mesowarriors made up of Patients, but sadly more carers who have lost loved ones. We have really fought together and built a community up as we help each other through the social media. But also some of us have built up a Soppurt group from our own homes and receive emails and telephone calls where comfort and help newly diagnosed people who have that shock we all had when first diagnosed. So many dont realise it is their right for second opinions, or where a trial can be found and we point the way.

Im so proud of the warriors and the way we run ourselves and keep in touch— together. We do have fun with Secret Santa and social meet ups as well as our very serious roll of raising awareness and raising money for research. So many people working so hard. I didnt realise until I went to the Workshops and met so many wonderful people.

Here I would like to thank you to Mesothelioma Uk for all your hard work for us mesowarriors  http://www.mesothelioma.uk.com/

But where we do need help is in the Banning of Asbestos to get it out of our lives. We need a safer future for our children in their schools and the environment.

This is where these Conferences pave the way but I do believe we need Mps and the Industry more involved and invited to come to these conferences to really see just what Asbestos has done and will still do if we dont sort the problem out.

I have a voice (we have a voice) Lets use it.

Linda Reinstein has written a blog to celebrate the Conference

NEW BLOG: ADAO is honored to be an invited guest and present at the 1st International Asbestos Safety and Eradication Agency Safety and Management Conference in Australia. I will be sitting alongside many of the world’s top ban asbestos leaders at this event including Dr. Richard A. Lemen, Dr. Ken Takahashi, and Laurie Kazan-Allen. As one of the globe’s leaders in asbestos prevention, the Australian government serves as a model for other countries and I couldn’t be more pleased to be a part of the conference. Learn more here! http://bit.ly/10yw6H5

12/11/2014 – Tyabb – Victoria – Australia
Our latest flyers to promote Asbestos Awareness Week in Fed Square Melbourne, and the Bernie Banton Day celebrations – please distribute. – Rod Smith

 

A wonderful bog giving the scientists view of the Saatchi Bill

http://medicalinnovationbill.co.uk/why-the-research-community-needs-to-rethink/

Professor Andy Hall

By Prof Andy Hall ­–   Professor of Experimental Haematology, Newcastle University

There is a deep-rooted and complacent culture across substantial sections of the medical research community that all is rosy in the garden, that we scientists know what we’re doing and we don’t need any help from outsiders.

Men and women of science should, of course, welcome challenge. It is the grist to the scientific mill – to propose a thesis, and test it, to see if it stands up or falls down. This is what science is about.

But when it comes to medical research and cancer research in particular, there is a sensitivity to challenge that tends towards destructive defensiveness and at times a pig-headed aggression.

For those who want to find new treatments for cancers, this is a problem. Progress in many areas of cancer research has been painfully slow. This is not for want of trying, or of bad intentions, there really are “no villains in this story”. It is because cancers are incredibly hard to tackle.

Many researchers have focused on developing therapies that target individual gene mutations within a tumour. But tumours are often heterogeneous with multiple mutations that will never respond to just one drug.

This focus on the individual gene mutation is in part a legacy of the phenomenal – but one-off – success scientists and doctors had in finding a cure for Chronic Myeloid Leukaemia a form of cancer which is almost unique in having one driver mutation.

Many of us have become fixated on this  success and we have become accustomed to a method of research designed to repeat it.

But sadly it will probably never happen. Unfortunately this means the science community is stuck in a rut. A culture of group-think has taken over and it is reinforced by an endless round of conferences where we clever laboratory kings and queens speak only to each other swapping high-minded clever research papers – all based on the same research methodology.

We need to break out, we need to be challenged and we need to accept that too little progress has been made in finding new cures for cancers.

But the problem is fundamental. My generation, who are now leaders in our research labs, hold our beliefs so dear that any challenge feels like an assault on us as people. Our work and our beliefs are bound up with our identity.

When pushed, doctors and researchers can be genuinely unpleasant to those who challenge them  – I’ve seen this at first hand. But to repel contrary thinking is a derogation of the scientific principle.

One area that must be challenged is the singular and exclusive reliance on old-school and large randomized clinical trials.

Of course, they have their place. But they are slow, cumbersome, expensive and at times wholly inappropriate to the needs of science and, more importantly, patients.

We also need smaller, faster, lighter trials with fewer participants. Trials that are easier to set up, when – as in the case of rare diseases and diseases affecting children – which can be set up quickly, and, crucially, can be adapted quickly during the trial.

We must no longer only rely on trials designed to detect small changes, which need large numbers of patients to find only marginal.benefits.

We need more, smaller, cheaper trials where we look for big effects. And we must record and share the data of success and, very importantly, of the inevitable failures.

Patients deserve this. Particularly, patients with rare diseases where there are never enough patients to fill a large and traditional randomized controlled trial

We need to challenge ourselves and we need to change.

Fortunately new ideas are emerging which are provoking debate and new ways of thinking.

One is the  Medical Innovation Bill. It will encourage doctors to try novel treatments in a clinical environment.

It is not the only answer, though it will certainly help encourage innovation. It is just one solution to a raft of problems that must be resolved. But my interest and support for the Bill is based on this – it is a start.

It is new thinking. It is challenging, it has  inspired debate – as well as anger among some conservative colleagues – that is driving scientists to question themselves and their ways of working.

This has to be good for patients.

Rays Blog http://mesoandme.wordpress.com/2014/11/12/wednesday-106/

Another day out on the train to Tooting Broadway. What a musical name.

Such a long journey on the train as it might be cheaper than the fast train but it takes hours.

We finally pulled into Victoria and then walked to the underground and had to get a train on the Victoria line changing to the Northern line.

Few we were so glad to arrive just before 11 at St Georges hospital At St George’s Hospital the  endocrinology department is part of the internal medicine, located in the Thomas Addison unit.

As we sat down all of a sudden everyone went quiet and dint move. Just like in a film. -weird then I realised it was the 11th hour on the 11th of the 11th month.

Everything had stopped.

The nurse came out and called me in and said sorry but she would have got me in and then wouldn’t have been able to talk to me.

She explained that The adrenal glands are located on top of the kidneys and secrete adrenaline, aldosterone and cortisol. These hormones maintain salt balance, blood pressure, and help maintain fluid concentrations in the body. Common adrenal disorders include Addisons Disease, Cushings Syndrome, hyperaldosteronism and adrenal tumors.

They are looking at my cortisol and that is the blood test they were doing today.

A cortisol test is done to measure the level of the hormone cortisol in the blood. The cortisol level may show problems with the adrenal glands or pituitary gland. Cortisol is made by the adrenal glands . Cortisol levels go up when the pituitary gland releases another hormone called adrenocorticotropic hormone (ACTH).

Cortisol has many functions. It helps the body use sugar (glucose) and fat for energy (metabolism), and it helps the body manage stress. Cortisol levels can be affected by many conditions, such as physical or emotional stress, strenuous activity, infection, or injury.

Normally, cortisol levels rise during the early morning hours and are highest about 7 a.m. They drop very low in the evening and during the early phase of sleep. But if you sleep during the day and are up at night, this pattern may be reversed. If you do not have this daily change (diurnal rhythm) in cortisol levels, you may have overactive adrenal glands. This condition is called Cushing’s syndrome.

The timing of the cortisol test is very important because of the way cortisol levels vary throughout a day. If your doctor thinks you might make too much cortisol, the test will probably be done late in the day. If your doctor thinks you may not be making enough, a test is usually done in the morning.

So blood was drawn off and then a drug put in but I had no ill affects. I then waited fir half an hour and more blood was taken. That was it I could go home. So all that traveling, which ended up as a whole day, as we didnt get in until 3pm.

I cant believe that. Surely we have endocrinology departments in nearer hospitals. I asked the nurse and she said it was because St Geroges backed the Royal Marsden and the trials there. I can see that but Train fares and the fact we had to get a trial to London then 2 tube lines really is naughty when you  are ill.

On top of all that the nurses didn’t even know about Mesothelioma. I had to sit there and educate them. That really annoys as they are working in a very old hospital that they might be surrounded by Asbestos.

Anyway they were lovely and friendly as always in the NHS and we did have a laugh.

When we got home Ray and I were exchanging our people watching skills and its so funny that we saw different people. One thing we did notice is that people are so much friendlier on the tube and train than they used to be. Its not a case of dont look at each other but there are lots of smiles and nods and winks. young people fall over themselves to let us have a seat. Is the world changing at last. Or was it always like it and we just dont take time to see.

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There was a man on the train coming home, all dressed up in a suit eating a bag of crisps then a long roll. He will be in line for heart problems in later life.

A younger woman by the side of us ate her roll so quick and then gulped lemon aid down so fast she gave an almighty burp. I laughed and she was so embarrassed. She said her throat really hurt and I said Rub your chest. Another burp helped her problem.

On the underground a young but very big coloured chap got on and I thought, Oh he looks like a drug dealer. He gave us a huge smile. You just never can really sum people up right appearances can be so deceiving.

We were shattered and just chilled out after 2 days train journeys. How do they do it everyday and work I do not know.

http://www.uchc.edu/patients/services/endocrinology/index.html

Rays Blog http://mesoandme.wordpress.com/2014/11/11/tuesday-113/ He is still happy with all this traveling. I do feel for him as he must be tired out.

 

 

 

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