A Diary of a Messowarrior Living With Mesothelioma -The British Citizan Award for health BCAh

 

I have so many wonderful memories of the past 2 days so I think its a case of adding photos and talking as I go.

We wanted to share the whole day with the Mesowarriors as I wasnt allowed to have people with us. I feel they should alter that as it would have been great to share it with so many others but I suppose it does come down to cost. So I will try and describe to you all what the day meant to me.

http://britishcitizenawards.co.uk/

Whether it is someone who has devoted their time to volunteering, someone who has helped the local community, someone who has cared for others, or just someone who is uplifting and makes a difference to your life – nominate them today and make a difference to their life.

These awards are open to each and every UK citizen and serve to recognise exceptional endeavour. Whether they have excelled in business, healthcare, the arts, in the community or education, get the recognition they deserve. We have two presentation ceremonies per year (January and July) which take place at the Palace of Westminster hosted by The Baroness Wilcox and Lord Dholakia .


Welcome to our Patrons

  2Duchess of YorkPatron: Sarah, Duchess of York

 “The pace with which we live our lives today often precludes us from appreciating the small kindnesses and gratitude that enrich our lives. The greatest kindness you can afford someone is to listen and it is with great pleasure that I have found the British Citizen Awards. This organisation listens to the citizens of this great country and not only heard the stories but rewards monumental efforts that would have otherwise gone relatively unnoticed. Please join me in honouring these great British Citizens and take this opportunity to listen to those around you so that they too may receive this great honour.” – Duchess of York



Patron: Dame Mary Perkins, Specsavers, Co-founder
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 “I became patron of the BCAs because I wholeheartedly believe that exceptionally devoted and dedicated people, whose selfless efforts make our world a better, safer, healthier and happier place, deserve to be honoured. I’m proud to be involved in an organisation which recognises and celebrates our nation’s unsung heroes” – Dame Mary Perkins

I was on the same table as this lovely Lady and we sat through the ceremony together 

 



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Patron:
Hilary Devey CBE, Pall-Ex Group

“These awards help elevate the stories of British people who are making a real, and often overlooked, contribution to society. Too often, these individuals do not get the credit that they deserve – and are too modest to seek recognition – and I am proud to play a part in celebrating them.” – Hilary Devey

   


Presentation DayMaureen Brass and Patsy Elliott - Home Page

All successful nominees will be invited to attend one of the presentation days at the Palace of Westminster in January     The presentation days offer those being recognised a unique opportunity to experience the history and atmosphere of the UK’s seat of democracy. This will be a truly memorable occasion befitting the achievements of those receiving an award. Numbers are extremely limited for this event so only those receiving BCAs and the person that nominated them will automatically receive an official invitation.

 


If you know someone worthy of recognition make sure you nominate them TODAY

 

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The i is Britain’s first and only concise quality newspaper from the same publishers as the Independent. The newspaper is aimed at “readers and lapsed readers” of all quality newspapers and is proud to support the British Citizen Awards.

 

 

So this was the background to the day ahead.

http://britishcitizenawards.co.uk/bca-january-2016-medallists/

My name was amongst wonderful people that had done some wonderful things I loved all their stories.

Mavis Nye

MAVIS NYE, BCAh

Kent

Mavis, of Whitstable, was diagnosed with a non-curable asbestos cancer known as mesothelioma in 2009. Mavis has turned her battle with mesothelioma into something positive, and is making her voice heard to educate people about this illness. Mavis works extremely hard, and has spoken at conferences and in parliament. She has also raised awareness and educated people through local and national newspapers, radio, TV, Mavis also published her own book in 2010, Meso Warrior, with all proceeds donated to mesothelioma UK.

Mavis offers a support network to other mesothelioma suffers and their families, either by internet, telephone or personal visits, through the group UK Meso Warriors. Mavis has extensively researched into the incurable disease and knows of every medical trial and medication associated.

Mavis is currently on a new drug trial, and is showing promising signs of buying extra time with her life. The new drug requires Mavis to travel the two-hour journey to the Royal Marsden hospital every fortnight for treatment. She has just received her 40th session of the drug, and has remained positive throughout her treatment and uses the time to meet up with other ‘Meso Warriors’ to share stories, advice and laughter. Mavis and her husband Ray, have a strong social presence and both have blogs discussing life with mesothelioma, both from the perspective of the sufferer and the carer. Mavis first set up her blog in June 2009, shortly after she was diagnosed, and has had over 280,000 hits.

Mavis and Ray use the blogs to talk about daily living with Mesothelioma, and research into the incurable cancer.

Nominated by Angela Caulfield

So we set off from Whistable to meet Angie and Tracey as they travelled down from Barrow In Furness. The opposite ends of the country.

Arriving at Victoria I paid my 50p for the loo.

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We sat and had a coffee and waited for the Sisters to get in from Euston and they soon appeared so we had a Coffee and a plate of chips

and they changed and went to left Luggage. We were ready to go to Big Ben travelling by taxi.

While we is the ceremony the girls amused themselves

 

We were tucked up in the warm and having tea with all the Celebs.

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Linda Robson was in the Audience and I was introduced to her .

 

 

 

 

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It was soon time to go for the Photo shoot in the Gardens and then climbed on the buses for a ride around London as a victory ride

We arrived at Church House where the final Certificates were presented

We were very tired as we all travelled to Whistable to have a great natter and talk over the day before falling asleep for the night

The girls took Louis out for a walk and were amazed he took them and showed them where to walk

 

We went on a car ride to show the coast line and than had a a meal at the Oyster Bed

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dav

 

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We soon had to say goodbye at the station as the sisters travelled back home

What a mad two days but what a wonderful time and I would like to thank Angie and Tracey for nominating me and for the warriors for all their backing and we have really raised awareness of Mesothelioma and the UK Mesowarriors and the Mesothelioma Warriors around the world Now lets see a world wide ban of Asbestos and a cure for Mesothelioma.

 

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A Diary Of a Mesowarrior Living with Mesothelioma-No Keytruda ThIs Week Due To A Rash and A New PICC Line Has Been Inserted

We left home in the dark with the wolf moon shinning away. The dawn broke as we were on the M25

Arrived at the hospital and I was seen early and had my bloods taken.

Off I went to have my new PICC line in which is a operation this time. My veins are Petite,as the nurse said. It is weird I’m very tall 5ft 9ins, but everything is small, my ankles, wrists, feet (6) hands and everything inside hats why I had renal failure, my Urethra’s are small one blocked when I was two the other when I was 45.

Im saying this as everyone finds my veins are to small. I was all wrapped up in blue covering and she was really having such a great time cutting into the veins to push the Picc line feeder up.

A PICC line is a long thin, hollow flexible tube inserted in one of the veins of the arm. The length of the line depends on how tall you are and where the insertion site is. Usually, it is 38–52cm long. It has openings on both ends. The tip of the PICC sits in a big vein just outside your heart while at the other end around 5cm of the line comes out of your arm. The space inside the line is called a lumen. You may have one or two lumens. Not all patients are suitable for a PICC line and a nurse specialist or doctor will assess you before inserting a line.  Sometimes a small ooze of blood may be noticed on the insertion site.

The specialist nurse scanned my arm first with an ultrasound machine. This helped to find the right size and type of vein to place the PICC line in. This is a painless process. My arm was then cleaned with antiseptic solution and covered with sterile drape. The nurse then injected a local anaesthetic to numb the insertion site. I did not feel any pain during the procedure. just stinging and pushing not to bad,on the insertion site while the specialist nurse was working. The procedure will took about approximately 20–30 minutes. A statlock (which holds the PICC in place) and a transparent, breathable dressing was applied on the insertion site to secure the PICC. A chest X-ray was also be taken to confirm that the tip of the PICC is in the tight position.

I was then free to go back to see my Doctor.

When she called me we disused how I felt and she told me the bug was Sepsis. She then saw the rash which has got bad this week and wasn’t happy. She spoke to the Trial Team and they said I shouldn’t have the drug this week.

I was disappointed but I do understand. they have to work out whether I have had enough of the drug and that the Immune system might have gone into over drive, but at least give my body chance to recover from the Bug and antibiotics. It might be the antibiaotics that have given me the rash. they just dont know yet.

She has given me a prescription for Dermovate Cream (Clobetasol PropionateA steroid Cream which is working already after 1 application and the itching is better already.

I then went round and had my scan but because I wasnt going back to see the Doctor I dont know the result.

I have an appointment to go On Tuesday to show how the Rash is doing and to discuss my whether I have the drug the next week. I will also know the result of my scan

As this has hit the headlines tonight I thought I should put it here in my blog as the signs are what I was describing for months now. So it shows it does get missed. and the poor baby in the news did die. Introduction

Sepsis is a common and potentially life-threatening condition triggered by an infection.

In sepsis, the body’s immune system goes into overdrive, setting off a series of reactions including widespread inflammation, swelling and blood clotting. This can lead to a significant decrease in blood pressure, which can mean the blood supply to vital organs such as the brain, heart and kidneys is reduced.

If not treated quickly, sepsis can eventually lead to multiple organ failure and death.

Each year in the UK, it is estimated that more than 100,000 people are admitted to hospital with sepsis and around 37,000 people will die as a result of the condition.

Signs and symptoms of sepsis

Early symptoms of sepsis usually develop quickly and can include:

  • a high temperature (fever)
  • chills and shivering
  • a fast heartbeat
  • fast breathing

In some cases, symptoms of more severe sepsis or septic shock (when your blood pressure drops to a dangerously low level) develop soon after. These can include:

  • feeling dizzy or faint
  • confusion or disorientation
  • nausea and vomiting
  • diarrhoea
  • cold, clammy and pale or mottled skin

Read more about the symptoms of sepsis.

When to seek medical advice

See your GP immediately if you have recently had an infection or injury and you have possible early signs of sepsis.

Severe sepsis and septic shock are medical emergencies. If you think that you or someone in your care has one of these conditions, call 999 and ask for an ambulance.

Read more about diagnosing sepsis.

Who’s at risk?

Anyone can develop sepsis after an injury or minor infection, although some people are more vulnerable. People most at risk of sepsis include those:

  • with a medical condition or receiving medical treatment that weakens their immune system
  • who are already in hospital with a serious illness
  • who are very young or very old
  • who have just had surgery or who have wounds or injuries as a result of an accident

Read more about the causes of sepsis.

How sepsis is treated

If sepsis is detected early and has not yet affected vital organs, it may be possible to treat the infection at home with antibiotics. Most people who have sepsis detected at this stage will make a full recovery.

Some people with severe sepsis and most people with septic shock require admission to an intensive care unit (ICU), where the body’s organs can be supported while the infection is treated.

As a result of problems with vital organs, people with severe sepsis are likely to be very ill and the condition can be fatal. However, if identified and treated quickly, sepsis is treatable and in most cases leads to full recovery with no lasting problems.

Read more about treating sepsis.

 

Sepsis, septicaemia and blood poisoning

Sepsis is often referred to as either blood poisoning or septicaemia, although it could be argued that both terms are not entirely accurate. Sepsis is not just limited to the blood and can affect the whole body, including the organs.

Septicaemia (another name for blood poisoning) refers to invasion of bacteria into the bloodstream and this occurs as part of sepsis. Sepsis can also be caused by viral or fungal infections, although bacterial infections are by far the most common cause.

http://www.nhs.uk/conditions/blood-poisoning/Pages/Introduction.aspx

A Diary of a Mesowarrior Living with #Mesothelioma caused by #Asbestos A wonderful box of sweets have arrived

Well I have been home for 3 days and all I have done is sit around and feel sick every time I take  antibiotics twice a day.

Co-Trimoxazole seems to be the worse. So I have separated the time between the tablets.

Seems to work better All Im drinking is flat coke and my lovely friend Steph has sent me a wonderful box of unusual sweets. I have put them away so that I really enjoy them when Im off the tablets

Ray has been doing everything bless him I have tried but he wont let me. I hate arguing about housework but we always end up laughing as he forces me to sit down.

We had to put a photo of ourselves as a young child and I put this one on when I was 1 adao graphic of mine.jpg-largeyear old 

 

 

 

 

 

The picture is one I used for my Asbestos Ban I have my fav doll which cant be seen as the photo is cropped. She was a black doll and when my baby brother was born I had put her in with my Mum and it shocked the Midwife when she came to our house . Funny the things you remember.

I love the stories of our Dragonflies and can see why The Uk mesowarriors chose a dragon fly as our emblem. Debbie loved Dragonflies.

So not a lot has gone on this week it has been so cold out there so walking is not an option. Louis and Ray go on their own.

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Toxic Thermoses Withdrawn from Sale

Jan 20, 2016

The Ministry of Health has ordered the immediate seizure of illegal thermos flasks from China which were on sale in a market in the town of Belluno, northern Italy. The contraband items were marked with the brand “DayDays” and barcode number: 8301182614705. Analyses of the contents of the 1.4L vessels revealed the presence of chrysotile (white) asbestos between layers of glass insulation around the flask. Other asbestos-contaminated thermos flasks imported to Italy from China were seized by officials in 2014 and 2015. Thermoses with asbestos removed from the market].http://ibasecretariat.org/abs_archive_news1580.php

 I feel we should all check our flasks just to be on the safe side.

China exports are really causing a problem as the crayons did last year.

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promenade floor tiles – external on balconies roofs and walkways found by RB Asbestos yesterday.

We are surrounded by the deadly stuff.

 

A Diary Of A Mesowarrior Living with #Mesothelioma The Problem Of My Tuesdays Dying Swan Act

Image result for picc line

Well this blog is a continuation of my Tuesday one.

I didnt know that would happen and Wednesday  I got up and was on the computer when the phone rang.

“Hi Mavis Sam here. Something has grown in your blood culture, so can you come to the hospital now. You will be kept in overnight “

I ran around and gathered up sleeping gear, dressing gown, soaps and tooth brush etc etc.

Poor Ray had to drive me back to the Marsden but lucky it was past rush hour and the roads were clear. He was getting a lecture about the freezer where he can get dinners and the dogs chops and chicken.

Its so hard to remember it all but we did really great.

On arrival everyone was so pleased to see me and gathered around as I was given my bed in the ward. It was like meeting old friends. 

It was explained that I come in each Tuesday the bacteria in the PIC line is pushed into my veins and when I had seen the Doctor and went to the canteen the bacteria was flowing through my veins and that’s why I did my dying swan act, and was having slight Sepsis, septicaemia or blood poisoning which is a severe illness in which the blood becomes overwhelmed with bacteria or an infection.  It can lead to inflammation in the entire body causing a systemic inflammatory response syndrome (SIRS).  Patients, who most likely would have fully recovered from their original injuries or illnesses, are dying from sepsis. 

Whoops!! It is amazing that my Immune system is so really good and has been fighting this infection as well as fighting my Mesothelioma. A nurse said.

So my going into shock on the Tuesday was a very real thing and it was great they found out just what was going on and yet there was no other signs. My vital signs all proved good just a slight rising in temperature and the colour left my face.

I was put in bed in a ward of 4 beds and Ray left for home to get back before it got dark.

 I was given my own nurse who was so lovely. Pam is from Jamaica and a real old style nurse. She was so kind and caring and was almost a one to one nurse for me.Sam came in and told me they are going to give me a loaded dose of antibiotics but not through the pick line.

Finding veins in my arm is a hard long process and each nurse has a go and they called in the nurse that never fails. She did so well and bloods were taken. They took blood from my right arm and blood from the pick line on the left arm. 

Then the antibiotics fluid went in through a vein.It was a huge bagful and took hours to drip into me.

Then I had another smaller dose of another antibiotic I have put all the names down but cant find them and wonder if these might be trial ones as well. I will ask on my next drug day.

I settle down for the night after a lovely supper. I have to say that the food has been so good at the Marsden. I have enjoyed all the meals.

I was woken up for another dose of antibiotics at midnight and then again at 6am.

Thursday when the doctors made there round Bret told me  The results proved there was bacteria in the PIC line so the line will come out and taken away for more tests.

I had the line out in the afternoon and a piece of the line was cut off to take away for the test.

I enjoyed talking to nurses and talking to other patients, some I had met on a Tuesday. Everyone was saying how I went quiet and white which surprised me as I didn’t think people noticed. 

When the Consultant came round she talked about my great responding to keytruda and she said that they are start another trial in 3 weeks. “Can I tell the Mesowarriors to come here and she said yes. They must have the right make up in the tumour and they mustn’t be on any Chemo or other trial. I said and have PD1 and she said not necessary as the criteria is not so hard now. 

In the afternoon everyone was being booked out and I was told I was staying until Monday as I had to have 5 days of antibiotic infusions. 

I slept that night in an empty ward so I was pleased Pam was working until late and we had a great chat. I bought up about the Statue of Mary Seacole and  she knew all about her. (I will print the story at the end of this blog.

Friday I woke to more infusions and being spoilt.

I have been told I can have a new PICC Line and it will be fitted next Tuesday I do question a Picc Line shouldn’t be in for almost two years. Googled and it said  How long can a PICC line stay in place? The PICC catheter can generally remain in place from five days to several months. In some cases, the catheter can remain in place for up to a year. hmmm !!!

It became time for me to go down to Smithers Ward which is a woman’s breast cancer ward.

Pam took me down late as we had a hard time getting another catheter into a vein. Rex had to use a new vein machine on me to find my veins. You know me miss curious and I was getting him to show me all my veins. He found what I thought was just a row of dots but they joined together as he rubbed them and he got the catheter in for me. So off I went with Pam and a drug machine  into the lift, and my bags. 

I arrived there and once again greeted by another sweet nurse saying. You wrote a book. “Oh who has been talking ” I said. “Pam told us all about you.”

The times I told my story over and over but everyone seems so interested in Asbestos and Mesothelioma. Even ill I’m still working with awareness.

Saturday My family turned up with Ray which was great 

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Selfey !!!

Sunday The lady in the next bed had all her family there so that passed the day and we have had a laugh.

This morning I got the signal I can go home with Co Trimoxazole 960mg and Ciproflxacin 250mg 1. What Co-trimoxazole tablet is and what it is used for Co-trimoxazole tablets are made up of two different medicines called sulfamethoxazole & trimethoprim. These medicines are sometimes given the combined name Co-trimoxazole. Both belong to the group of medicine called antibiotics. They are used to treat infections caused by Specific bacteria. This means that it is only suitable for treating some type of infections. Co-trimoxazole tablets are used to treat or prevent: – Lung infections (Pneumonia or Pneumocystis pneumonia) caused by a bacteria called Pneumocystis jiroveci (previously known as Pneumocystis carinii) – Infection caused by a bacterium called Toxoplasma (toxoplasmosis) Co-trimoxazole tablets are used to treat: – Bladder or urinary tract infections (water infection) – Acute worsening of chronic bronchitis due to bacterial infection. – Ear infections such as otitis media – An infection called nocardiosis, which can affect the lungs, skin and brain.

I went back to Oak ward and the porter that took me said that his Dad had Mesothelioma so I told him to get his Dad referred to the Marsden to see if the trial suited him. now how amazing was that.I said we were meant to meet today.

Arriving at the ward and onto a bed again the doctor saw me and signed me off. I had a lovely shower and got dressed.

Ray came and picked me up and I said goodbye. What a week this has been.

Mary Seacole

St Thomas’ hospital in London has long been associated with the great pioneer nurse, Florence Nightingale – indeed it was for many years home to the Florence Nightingale School of Nursing and Midwifery. But now the hospital has been chosen as the site for a 3-metre high bronze statue of Mary Seacole, who is now remembered as a nurse who tended the sick in the Crimean war. The Seacole statue will be taller than both Nightingale’s statue at nearby Waterloo Place, and that of the first world war nurse, Edith Cavell, in front of the National Portrait Gallery.

 

http://www.bbc.co.uk/history/historic_figures/seacole_mary.shtml

Mary Seacole was a pioneering nurse and heroine of the Crimean War, who as a woman of mixed race overcame a double prejudice.

Mary Jane Grant was born in Kingston, Jamaica in 1805. Her father was a Scottish soldier, and her mother a Jamaican. Mary learned her nursing skills from her mother, who kept a boarding house for invalid soldiers. Although technically ‘free’, being of mixed race, Mary and her family had few civil rights – they could not vote, hold public office or enter the professions. In 1836, Mary married Edwin Seacole but the marriage was short-lived as he died in 1844.

Seacole was an inveterate traveller, and before her marriage visited other parts of the Caribbean, including Cuba, Haiti and the Bahamas, as well as Central America and Britain. On these trips she complemented her knowledge of traditional medicine with European medical ideas. In 1854, Seacole travelled to England again, and approached the War Office, asking to be sent as an army nurse to the Crimea where there was known to be poor medical facilities for wounded soldiers. She was refused. Undaunted Seacole funded her own trip to the Crimea where she established the British Hotel near Balaclava to provide ‘a mess-table and comfortable quarters for sick and convalescent officers’. She also visited the battlefield, sometimes under fire, to nurse the wounded, and became known as ‘Mother Seacole’. Her reputation rivalled that of Florence Nightingale.

After the war she returned to England destitute and in ill health. The press highlighted her plight and in July 1857 a benefit festival was organised to raise money for her, attracting thousands of people. Later that year, Seacole published her memoirs, ‘The Wonderful Adventures of Mrs Seacole in Many Lands’.

Seacole died on 14 May 1881.

 

 

 

A Diary Of A Mesowarrior Living With Mesothelioma -Another Bad turn today -what is going on ??Come on Keytruda I only have 6 more Infusions on the Trial

What a dark morning this morning was. Pitch black at 5.50am as Ray took the dog on his walk and then we set off on the Motorways.

The traffic was so heavy but moving just a load of lights in the dark of the early morning.

There had been a Burst water main but lucky enough that was on the A249 to Sheerness.

We had a very clear run and I felt well.

book

I presented the Marsden with a copy of my book and signed it for them with the promise that book three is being written now to cover the next two year to cover the trial. Everyone was delighted as they read book one.

We settled in the waiting room and other patients arrived an so we chatted away about our different treatment. There was another Mesothelioma patient and he was telling me has was been on a drug that failed and now on a new one. This is why I keep saying get refereed to the Marsden. They get trials -small ones that the NHS dont get. 

He is doing very well although he had a bad cough. A very positive man.

I went in for my bloods and they were taken and I went to wait for the Doctor.

Called in I discussed my funny turns and he wanted a ECG and a trace test. Blood pressure standing and laying down. –He did you tell me the symptoms and let me be the Doctor and I will tell you what it is. whoops ! I must admit I do self diagnose bless him he is right to tell me off.  

He took me to the nurse and I started. Shivering and coming over funny so they saw one of my dying swans  there in front of them.

Everything comes out great all the measurements are good.

One of the nurses said its like you have to have the drug as if your doing cold turkey. The Doctor said no way.He had said they are finding Keytruda does have so really weird side effects.

What they have done is to take a blood test in some special culture and see what grows as they think that if there was something in my PICC line and when they take blood and the flush it travels in my blood as they said it was like I was having epileptic shock.

They wrapped me up in a blanket after I was sick and gave me a sickness drug.

I went to sleep on and off all day.

I woke up feeling OK just as the wonder drug appeared at 1pm and after it went in I felt really good.

I dropped off to sleep coming home and felt so bad that I had been unsociable with the other patients. But they will understand as I would with them.

I slept off and on coming home and got in to a warm house and a hot coffee.

I now feel so well. What a funny day

The Doctors did go on strike today but The Marsden was covered well.

I do agree with the strike as it is about a new contract but I wont get political But just had to put this on as it is on Facebook and its so true.

nhs doctors strike

I do agree with that 

http://www.bbc.co.uk/news/health-35294637

Junior doctors and medical students demonstrate outside the Houses of Parliament in London as part of an England-wide one-day strike in a dispute with the government over new contracts

Junior doctors have been urged to return to the negotiating table by Health Secretary Jeremy Hunt, who described their 24-hour strike in England as “completely unnecessary”.

NHS England said about 10,000 junior doctors had reported for duty out of 26,000 scheduled to work the day shift.

Thousands of routine operations have been cancelled during the walkout in protest at a proposed new contract.

The BMA said the strike sent a “clear message” to the government.

“We deeply regret the level of disruption caused, but this is a fight for the long-term safety of patients and junior doctors’ working lives,” said Dr Johann Malawana, chair of the British Medical Association (BMA) junior doctors’ committee.

He said that junior doctors had “no confidence” in the new contract.

NHS England apologised to affected patients, and said trusts would try to reschedule cancelled appointments and operations as soon as possible.

‘Hardly surprising’

The walkout, which began at 08:00 GMT, comes after talks between the union and government failed to reach agreement on the proposed new contract. The BMA is concerned about pay for weekend working, career progression and safeguards to protect doctors from being overworked.

But ministers have argued the current arrangements are outdated and changes are needed to improve standards of care at the weekend.

Junior doctors’ strike: Live updates

 

 

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

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

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

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

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

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

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

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

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

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

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

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

Stories that caught my eye this week 

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

House passes bill to reform asbestos lawsuits

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

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

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

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

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

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

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

By Kathleen Ruff

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

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

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

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

Great little find today

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

DSCF9963AA

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

 

 

 

A Diary of A Mesowarrior Living With Mesothelioma -The Royal Marsden Xmas Tree – ADAO write up about my Award- And a T Shirt has stirred our anger

dav

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I forgot to show the Royal Marsden Christmas tree. It looked so pretty as we pulled up last Tuesday at 7.30am as the roads were so good with every one still at home in bed

It created a magical scene in the dark of early morning.

We have the official invitation Yipee makes it seem real now
The Lord Dholakia requests my Company BCAwards. Thankyou Angela Anjowanjo Banjo and Tracey Racey and the Mesowarriors I wont let you down and I love you all

So we are all ready as for some reason i have been spring cleaning. Wether it was because it was new year or the fact The sisters are coming to stay after the Awards so I want it really nice for them I dont know But I have worked through a list of things to do and one was to really throw away cloths I have stored in the Ottoman bed. Why do we keep such things when if you run out I can buy some more.

How people in my early life threw out and bought new every season I dont know.

So I have a tidy under the bed and the whole house looks good and tidy.

Ray has been wonderful working with me. Just one room is not done and thats this den. I have so many books and things I dont know how to throw away so I will make do with a tidy up.

ADAO wrote a really nice piece about my Award http://www.asbestosdiseaseawareness.org/archives/36992

Mavis Nye British Citizen Award CANVA

ADAO Congratulates UK Mesothelioma Warrior, Mavis Nye, for being Recognized with a Prestigious British Citizen Award

I was really pleased with it –Thanks Linda Reinstein.

meet up 1

We didnt know we would meet up again but we have both been invited to talk July 1st at the TUC Congress Centre London for Mesothelioma  Awareness Day releasing the  doves like we did last year.

The Icing on the cake is that Jeremy Corbyn will be talking as well. 2016 gets better and better. I can direct my Speech to him and ask about research and what his views are.

We had a bit of a twitter urgency yesterday as a Company advertised a T shirt

Why would you sell such a T shirt we all put a complaint in and the Company have emailed

This is just not on as it is insulting to us Mesothelioma Warriors. 

Would they have allowed I love Cancer –I dont think so. We have to carry on reporting this to the  Advertising Standards Commission or simile.

Talk about rub our noses in it I think I would rip it of anyone I see wearing one http://www.zazzle.co.uk/i_heart_asbestos_tshirts-2357585241

Rays Blog https://mesoandme.wordpress.com/2016/01/01/friday-140/?fb_action_ids=1031803930173757&fb_action_types=news.publishes