Living With Mesothelioma -My Diary- Mesothelioma Action Day At The London Hazard Centre Farringdon London

A really lovely journey on a warm day to London and the tube set us in a great mood as we made our way to Farringdon Station.
I crept in and stood at the back and watched Linda Reinstein  talking to Philip Lewis waiting for her to realise Ray and I were actually there. she turned round at last and gave the broadest of smiles. We hadn’t seen each other for about 18months ago.
So lots of hugs and laughter.
We had a tea and waited to go outside to release the Doves
The dove release was so special.They came out and flew off free taking our thought of all the mesowarriors that have lost the battle. Free spirits now. After their release the doves usually circle in the sky above a couple of times, they then fly off safely to their home.  Home is very important to these amazing birds.  After their spectacular release, they will usually circle over head, then fly back to their home.
We all went back inside where Philip Lewis, Chair London Hazard Asbestos Group spoke his opening remarks.
Tony Lennon SERTEC President and
Gail Cartmail Assistant General Secretary UNITE
Rachel Thomas, Guys Hospital Mesothelioma Group
The HSE reports that approximately 3,200 people in the UK die from the disease each year, and this is set to continue until the peak of mesothelioma deaths, which is expected around 2020.
 Michael Lees has retired from the leading role as he is happy with the team and all they do. The fight goes on “More than 75 per cent of Britain’s state schools contain asbestos. Much of that is badly maintained, meaning that children and staff are exposed to this killer fibre. Over 140 school teachers have died from Mesothelioma in the past ten years. An unknown number of cleaners, admin staff and caretakers have also died.”
Linda Reinstein ADAO US Spoke about her story of her meeting up with Mesothelioma through her Husbands contact and sadly his lose of life.
Alan Reinstein died in 2006 at age 66 after a fierce battle with mesothelioma, but Linda has carried on his fight to this day. As a way of coping with her tragedy and intense grief, she co-founded the Asbestos Disease Awareness Organization (ADAO) in 2004, a nonprofit with a mission to serve as a voice for victims of mesothelioma and other asbestos-related diseases. The organization has played a major role in fighting for victims and helping to shape public policy.
DSCF9749
Linda uses her camera constantly and she made us laugh taking a Selfie.
We stopped for lunch and all of us were able to chat away . I was surprised at people saying “We Tweet with you ” A face to the name at last.
After lunch it was the turn of Janice Allen
Mrs Allen, a 53-year-old saleswoman, who was exposed to

asbestos on the shop floor whilst working in two M&S stores between 1978 and
1987, first in its flagship store on London’s Oxford Street and at Uxbridge.
She was diagnosed with mesothelioma and Harminder Bains, applied for a court
order that M&S disclose surveys of stores. As a result, M&S admitted negligently
exposing Mrs Allen to asbestos.
Mrs Allen’s case is thought to be the first in which Judgment has been given for a M&S
employee who was exposed to asbestos by simply working on the shop floor. After the
case settled Mrs Allen said:
“I feel betrayed by M&S. I worked very hard. But to think
beneath the surface, they were, exposing people to deadly risks”.
Harminder said:
“It is possible that there may be other people who were exposed
to asbestos in the same way as Mrs Allen. I have represented clients who have
been exposed to asbestos in hospitals, offices, banks and schools.
However, there is no way of medically screening for mesothelioma so my
recommendation to anyone who may have worked at M&S or any other public
building in which there is a possibility that there has been exposure to asbestos,
is that they attend their GP and ask to make a note of it on their medical records.
Then I was called up to speak
DSCF9752
I obtained Mesothelioma by washing my Husbands clothes when he came home from work at the Chatham Dockyard, He was a Shipwright.

After his apprenticeship and then National service he returned to the Dockyard.
This is when he worked with Asbestos, the lagers lagged everywhere in the ships as they were being refitted.
I lived a wonderful healthy life and then I retired in 2000 sold our house and moved to the Coast bought a Motorhome and settled into retirement.
The story of Mesothelioma began.
It is the same story so many Mesowarriors describe,the fact you cant breath and struggle to walk, so I contacted the GP had a Xray and ended up having 7 Litrs of fluid drained.
The Bi-op then confirmed Mesothelioma and then the 6 months death sentence.
All this leaves you numb and alone.
I went through 1 Session of 6 chemos had shrinkage then 15 months later regrowth so I was put on a trail NGR-hTNF at Maidstone
which Im afraid did not work for me or I had a Placebo.
They dont leave you 4 more chemo’s slight shrinkage.
When it grew back I had 2x 6 sessions of Chemo. But I became very allergic and the chemo was mutating and fighting my body.
I was told no more treatment.
I couldn’t take that and I asked to be referred to the Royal Marsden.
Prof Bono offered me the trial of Imunotherapy the MK3475-28 Merck trial that we are all hearing about. From Day 1 I called it my Miracle drug and I pat each bag and say “ Go do your best” much to the amusement of the nurses although they are saying it now.
There were 3 Mesothelioma cases when I started but sadly it didn’t work for 2. They take three little test tubes of blood every 2 weeks that they send to have my DNA looked at as they are trying to find the Gene that is causing this miracle.
Each scan brings wonderful news and the shrinkage is fascinating, after 27 drug infusions.
Two marker tumours have disappeared another 1 has almost gone and all the other areas have had great shrinkage. The hope is that after allowing me to go on that the shrinkage will carry on to headline news as I’m the first one in the world to have so much shrinkage.
Over 80% now.
So I say to the professionals working in the asbestos sector —–
I got my exposure from washing my husband’s work clothing, and many people have suffered and are going to suffer from asbestos as a result of unintended exposure, since the use and importation has been prohibited in Europe the exposure people are now suffering and continue to be exposed to is a result of asbestos still in our built environment, so for the sake of the future generations asbestos must be removed from the world we live and work in
To do that it requires professional companies operating at the highest standards to continue to remove this category I carcinogen safely and make our world a safer place. We must never forget those who have died as a result of asbestos- all were preventable deaths.
We must ensure that future generations are kept safe from this cruel and deadly mineral.
And that current generations can get justice and access to medical treatment that they deserve. Their work contributed so much to our economy yet they have paid the ultimate price with their health.
Thank-you
 Harminder Bains, a partner at Leigh Day the law firm who are hosted the London event with London Hazards campaign, said:

“As the recent report into the state of Parliament showed, no one is immune from the threat of asbestos.
“Politicians need to be aware of the dangers, not just to others but to themselves as they remain potentially exposed to the danger within their workplace.
“We are only now seeing the deadly legacy from exposure to asbestos decades ago. We must continue to act to ensure that the eradication of asbestos is made a priority for all agencies.”

The best news was that Harminder said she had been late because she had the news that the Government have don a U Turn and No one putting a claim in for Compensation will have to pay the £10,000.00 up front. Many didn’t know that had been passed as it was passed on the day they broke up for the General Election.
She has given us a copy of the email from the Lord Chancellor so believe me its true as I know some Mesowarrior  have been so worried if they paid this and then lost their case they would loose £10,000.00.
Dave Fisher from Thompson’s Solicitors Gave a great talk and i have to say that we in the UK are lucky to have such Solicitors. They really do care about us Mesowarriors. They are not Ambulance Chaser’s and they are always willing to give advice when I need help with Infomation.
Asbestos remains the single biggest cause of work related deaths. The people affected are
suffering through no fault of their own and we believe this country owes a debt of justice to
asbestos victims and their families.
That is why we are proud to support the Charter for Justice. We believe these changes will
make a real difference and we hope you can support them too Please sign the Charter at this link
DSCF9750
Peter Farrell Chair London Hazard Trust Board Closed the meeting.
It was so successful and I haven’t been able to tall you every interesting word spoken. It would be great if we saw more people at these meetings so we raised more awareness.
DSCF9751
Janice and I did a little filmed Interview for Hazard to use for publicity in the future.
So it was all over and we were starving so up the pub we went going out into the bright sunshine and noisy London.
DSCF9754
Linda ate fish and chips.
More Selfies
And that was it we had to say goodbye and travel home. Tired but really happy day has been had.

Living With Mesothelioma- My Diary- What a night last night was ?? All ready for Mesothelioma Action Day Tomorrow

When people talk about heat waves and how bad the heat can make you in the past I have never really seen what they meant.

Being a dark haired brown eyed dark skin it hasn’t really meant anything to me. Summers have been hot in my life and I have loved it.

Well yesterday really knock me back. as the temperature rose I wilted. A wet rag in my chair with no energy what’s so ever.

The dog joined me and he panted so much I thought we were both going to heaven together.

I had been told by my nurse on Tuesday that a cancer patient must drink water as we are prone to DVT in hot weather so I kept drinking and drinking but that meant I was in and out of the Loo all day.

The temperature got up to 98.4F in the Lounge and 94F in the bedroom.

The fans were going as well. It was funny seeing the dogs fur all blowing up i the breeze.

DSCF3231

When we went to bed we just didn’t want to be there and I tossed and turned but I must have dropped off.

When we woke up I was really cool and it was great to get up and feel well again –Human.

Thank goodness for that. The day was so cool outside that the dog and myself went out early, it was 6am.

The world was quiet except for the cars speeding up the lane taking the early birds up to the motorway.

The world was very right again.

Thank Goodness the Operation Stack was able to thin out today as the Ferries are running a 2 hour service. that’s not a lot but it will clear it slowly.

Then a cleaning up operation has to happen before they can open the Motorway from Maidstone. it doesn’t bare thinking about. No loo’s for the poor men so we all know where they have had to go it must be a health hazard in this heat.

We had to go and buy the rail tickets for London for tomorrow to after lunch we trotted off to the station and I walked Louis again while ray bought them.

Im looking forward to speaking at :-

My Speech carries a message to the Asbestos Industry. We might be the patient but people forget the reason we are suffering is because of Asbestos therefore we are the experts, knowing what the dangers of the substance are. We have all had to study and find out where we were contaminated, therefore we are the best ones to talk about the subject. I want to show the people, who are responsible for dealing with it in public surroundings why they are doing the great job. To stop people suffering the way the Mesowarriors have.

Yesterday the world was on fire with so much research and drugs being talked about. Immunotherapy is really doing well and will soon be through as a drug but there are other trials with good drugs and great shrinkage going on,

We fund a lot of research into the deadly asbestos-related cancer, mesothelioma. With Action Mesothelioma Day coming up, we thought we’d share with you some of that work. Sarah is one of our researchers, read about her work to find better treatments for mesothelioma

Sarah shares her exciting research into treatments for mesothelioma, a devastating lung disease.

Sarah MartinMesothelioma, a deadly cancer caused by breathing in asbestos dust, devastates lives. Right now we have no cure for it, and only 1 out of every 10 people who are diagnosed will survive longer than three years.

But research has identified its Achilles’ heel. And now we want to find out how we can exploit it.

A critical need

Chemotherapy is often the go-to treatment for mesothelioma – but more than half of people gain only 2-3 more months of life, or fail to respond to it completely. It’s clear to me that there’s a critical need for a more focused approach to treatment.

To find more effective ways of helping people with mesothelioma, we need to learn what drives its growth.

I lead a team of 7 researchers, from PhD students to clinical research fellows and postdoctoral researchers, and our lab is focused on finding new ways of treating cancer based on their genetic makeup.

We first became interested in mesothelioma when working with Dr Peter Szlosarek, who discovered that half of mesothelioma tumours have lost the function of a certain gene called ASS1.

This gene produces an amino acid called ‘arginine’, which is one of the building blocks that cells – and so mesothelioma – need to grow.

Those mesothelioma tumours which have lost the ability to produce arginine themselves are forced to get it from the blood instead. So by blocking them from getting the arginine, we can kill the cancer cells. A recent clinical trial attempted this, and we saw encouraging activity.

Our research

In our research, we use a library of drugs that have been used to treat other conditions to see if they have any positive effect in treating mesothelioma. We’re looking for a drug that might treat those mesothelioma tumours which don’t produce arginine.

These drugs will potentially kill the tumour cells without harming the healthy cells, reducing the difficult side-effects that often happen with chemotherapy. They could be used alone, or in combination with other drugs that starve mesothelioma of arginine.

This approach is called ‘synthetic lethality’ and has been successful for treating some breast cancers and ovarian cancers which are deficient in a different gene.

Excitingly, we have already found some approaches that we’re investigating further. They suggest that we might be able to stop the cancer becoming resistant to the drugs used to treat it, which is often a big obstacle in cancer treatment.

Ultimately, drugs that look promising which we think could effectively be used to help people with mesothelioma will be taken forward into the clinic.

The inability to produce arginine is common to several difficult to treat cancers, so our work could potentially shed new light on those too.

Making a difference

It’s always challenging when experiments we hoped would be successful don’t work, or when results happen very slowly, and especially when people’s lives are so dependent on it.

But it’s the days where an important experiment gives us good results that make those tough times worth it. When that happens, you know those results could mean a new way of treating people and change everything for them and their families.

We’re working with the British Lung Foundation on this project as they have a specific interest in mesothelioma, and unfortunately it’s difficult for research into this condition to be supported by the major research funding agencies. But as a charity, they depend on your generous donations to keep investing into our work.

Action Mesothelioma Day is an opportunity to talk about this deadly lung condition so that we can make more people aware of its devastating impact, but also the great opportunities research can provide.

Contact St Barts for this Trial —

http://blog.blf.org.uk/2015/06/mesothelioma-research-action-on-arginine/

Verastem: Novel Drugs Targeting Cancer Stem Cells

Verastem, Inc. (NASDAQ: VSTM) is a clinical-stage biopharmaceutical company focused on discovering and developing drugs to treat cancer by the targeted killing of cancer stem cells. Cancer stem cells are an underlying cause of tumor recurrence and metastasis. Verastem is developing small molecule inhibitors of signaling pathways that are critical to cancer stem cell survival and proliferation: FAK, PI3K/mTOR and Wnt.

Verastem has contacted and they are doing well with the Command Trial which is in many Cancer Hospitals now.

Please get on these trials they need our backing as the Drug Companies are really putting everything in to find us a drug to beat Mesothelioma.

http://phx.corporate-ir.net/phoenix.zhtml?c=250749&p=irol-news&nyo=0

Over the next 30 years, it’s expected that 60,000 people will die as a result of mesothelioma. Yet far less funding is invested into researching this cancer than into diseases that kill similar numbers of people, such as skin cancer.

http://www.nursingtimes.net/student-nursing-times/virtual-placement/those-affected-by-mesothelioma-deserve-far-better-than-what-theyve-had-over-the-past-20-years/5087076.article

Mesothelioma care has come a long way in the past 20 years, explains specialist nurse Leah Taylor

Leah Taylor and Chris Knighton

My first experience of mesothelioma was as a student nurse 20 years ago. I cared for a woman who had been exposed to asbestos dust while washing her husband’s overalls. I remember being shocked that so little was known about this devastating disease and that there was neither treatment nor cure. All I could do was manage her symptoms.

Mesothelioma is a type of cancer of the lung lining mainly caused by exposure to asbestos. Most people will die within months of their diagnosis and fewer than one in ten will survive three years.

Over the next 30 years, it’s expected that 60,000 people will die as a result of mesothelioma. Yet far less funding is invested into researching this cancer than into diseases that kill similar numbers of people, such as skin cancer.

Change is coming about,slowly but surely. But there is still so much to be done to support people affected by this terrible condition.

I can’t imagine doing anything else other than being a nurse and caring for people. Looking after people with cancer and those at the end of life have always been the parts of nursing I’ve found most rewarding.“Looking after people with cancer and those at the end of life have always been the parts of nursing I’ve found most rewarding”

When I heard that the Mick Knighton Mesothelioma Research Fund (MKMRF) – part of the British Lung Foundation – had decided to fund the first ever mesothelioma clinical nurse specialist in the North East, I knew I couldn’t pass up the opportunity.

The north east is one of the areas worst affected by the disease in the UK.  As a mesothelioma nurse specialist I’m able to provide much needed support, care and access to information about new research and treatments for those affected by mesothelioma.

I treat patients in Northumberland and North Tyneside and work with other regional teams to improve access to support groups, treatments and information. As nurse lead for mesothelioma, I am also responsible for ensuring mesothelioma issues are raised regionally.“This is an important time for mesothelioma care in the UK”

There’s so much that I enjoy about being a mesothelioma nurse specialist, but I particularly love the interaction with patients and the knowledge that I can help – even in a small way – at a time that is so difficult for them. I love that no two days are ever the same and I feel I’m always learning something new.

This is an important time for mesothelioma care in the UK. Nurse specialists have the potential to significantly transform care for those affected by mesothelioma. There are currently ten mesothelioma clinical nurse specialists here and I’m very excited to see how this network of expertise develops both in my region and in other parts of the country.“I feel proud to be able to say I’m part of this new chapter in mesothelioma care”

Those affected by mesothelioma deserve far better than what they’ve had over the past 20 years. I feel very privileged to be working with the MKMRF and the BLF and I feel proud to be able to say I’m part of this new chapter in mesothelioma care.

Leah is based at North Tyneside General Hospital, part of Northumbria Healthcare NHS Foundation Trust. Leah is doing her part but there is only so much she can do without more investment in research to improve treatments, prognosis and perhaps one day, develop a cure. You can help by joining the BLF’s campaign to create a sustainable research fund. You can get involved and support our campaign for mesothelioma research.

So Good Luck all the people around the Country I hope your Mesothelioma Action Day all go well. and lets really report what we do lets really raise the awareness.

Rays Blog —————————-

Last night was intolerable neither of us could sleep and louis was in a state. But today has been a lot better ,still warm. I had to go to the station to get tickets. I was amazed. the journey to london we usualy make is after 9 am and its £52 for 2. But because we need to go before the 9 am watershed it was £118. [ 68 more words. ]

https://mesoandme.wordpress.com/2015/07/02/thursday-128

Living With Mesothelioma -My Dairy- The Royal Marsden, Drug Day and Operation Stack made us late getting home

I dragged myself out of bed when the alarm set off. I sort of slid up the passage and into the bathroom and put myself under the shower. That bought me round and after Ray walked the dog and i made sure he had water and I hid chews around the place so that he amused himself finding them all day.

The journey was great and we got there in good time.

I was seen fairly on time and bloods were taken then waited to see the doctor.

It was my Greek God today. he is so interested in the trial and I do have a good chat as really there is no change in any of me. The problems I have, never change.

My CT Scan is August 11th doesnt the three months go fast.

The Drug is not perfect on its own it seems it’s just too hit and miss. My results are wonderful but that’s not the case through the world. I was informed  today that only 20% Mesothelioma throughout the world have shown shrinkage. Its early days and they have a long way to go yet but they are on the right track.

The results are better with other cancers. What is it about Mesothelioma that makes it so difficult. Is it because it is caused by a barbed asbestos fibre, so it is an object actual stuck in our bodies that irritates and causes a wound that mutate into a horrible cancer.

We all breathed in different coloured fibres, different amounts at different ages. I can see why nothing is uniformed so creating different exposures

So we came down to sit outside in the sunshine and found an empty bench. A fire engine was in the car park and wondered why. They had fire maintenance going on so I thought it was that and then the Fireman was spraying all the cars that came in and washing their windows, even the buses were showered. than the children from Oak Ward came out and they were having a go and looking in the Fire Engine.

f2

All good fun and lots of laughter bless them They break my heart with their hair loss and so thin. I shall never get over the sights I see in this hospital but I do see a lot of happiness as well.

We went back in upstairs and a long wait. as they were short-staffed And also the pharmacy took ages to produce my drug. It had come out of the fridge at 12.30pm so they had to get it into my veins within 4 hours. I went in at 3.27pm. They just made it.

Its been a long boring day if it wasnt for the other patients and their carers who were all a chatty lot this week. So we were all swapping stories and passed the time away.

So that was it I could come home and we thought we might get in by 6pm –Wrong!!!!

Why have they put operation stack between J 8 and junction 9 on the M20.

Everything was told to get off on the A249 for Dover. Didnt put a message up that all other traffic could divert off at J8 for the A20.

So everyone piled up in a huge long line of stopped traffic.

We had to queue and then they had a message for the Motorist that they could go on to J8 so right near our turn off to the A249 traffic realised so making it easier for us and we picked up speed again.

We are home but these poor lorry driver are not. The Police have to make sure they have food and water and in this heat they must be so fed up.

http://www.dover-express.co.uk/M20-closed-sides-phase-3-Operation-Stack-begins/story-26804293-detail/story.html?r1=

“Passengers, on both sides of the Channel, intending to travel through either Dover or Calais should check with their chosen operator before they travel. Travel advice can be found on the information and advice pages on GOV.UK.

“Operation Stack is in operation on the M20 and road users are advised to follow the signs in order to minimise disruption.”

See it’s not only Passengers that it upsets It’s all the traffic in Kent as well. grrrr

Living With Mesothelioma -My Diary – A wonderful Sun Set, Wimbledon is off to a great start, and Im heading BLF for Mesothelioma Action Day

Such a hot hot day but we musnt complain as we get such few nice days.

Last night we had a wonderful sunset that  had been caught  by Whats on Whitstable. From our home it was a lot redder than this.

But a wonderful photo anyway Then this morning it was just like this again. Turner used to love our sun sets here and painted so many of them.

We have done the dog play at the park and we were all on our own. Although there was a thing that happened that made me smile.

A car pull up and two young people had a kiss then she got into a car that was parked up. Love it was it an illicit love affair going on. I will never know.

https://www.facebook.com/whatsonwhitstable?fref=photo

Wimbledon

http://www.bbc.co.uk/sport/0/tennis/16660418

Wimbledon has started at last and amazing the weather is warm and so nice.

There has been so many years where we have wet weather.and all you see is the covers going on and off so we hope that this year they can play all the games in the dry.

The best seat in the house

Sue Barker will present live coverage across BBC One and BBC Two with 153 hours of tennis scheduled.

Joining her will be expert pundits such as John McEnroe, Tim Henman, Andy Roddick, Martina Navratilova, Lindsay Davenport and Virginia Wade.

If you miss any of the action, Clare Balding will present Wimbledon 2 day on BBC Two, rounding up all the best bits from the All England Club.

The new daily highlights programme will feature a live audience and celebrity guests who will talk about the latest news and hottest topics.

I don’t like the early games as we see the lesser player being knocked out but the champions.

Sometimes this doesn’t happen i know but then it’s so sad to see a great player get knocked out so soon.

vacuum-theft

Industrial vacuums stolen from construction site contain ‘dangerous’ levels of asbestos, police have warned. Why do people put themselves into such danger but there you go they now will have a lifetime worrying whether the have taken the dust into their body.

http://www.walesonline.co.uk/news/wales-news/industrial-vacuums-stolen-construction-site-9546911

Who knew: in 1980 they released an aluminium coated chrysotile asbestos bound limited edition Stephen King book “Firestarter”. Crazy. On the plus side only 26 were made and they’re worth a fortune now. GARY MCKENDRICK mentioned on LInkdin –Just read it alone, outside and with your respirator on. What a crazy thing to have done as it was 1980 and it was well-known by the normal man who Asbestos was dangerous.

Asbestos Onestop's photo.
British Lung Foundation have used my story to highlight Mesothelioma Day 3rd July 2015.
I’m so honoured they have chosen me
They say at the end of my story :-
Mesothelioma research funding graphic

Research into mesothelioma receives less funding than other cancers which kill similar numbers of people, and that’s something I want to change. Raising the profile of mesothelioma is really important to me; I want more people to know what it is and the impact it has on so many lives like mine.

Action Mesothelioma Day is a great opportunity to talk about this.

We will find a cure for this deadly disease. But we can’t make it happen without more funding for research and support for mesothelioma.

This Action Mesothelioma Day, please consider making a donation to the BLF and help us get one step closer to the end of this asbestos-related cancer.

I hope my story brings hope to others and the donations roll in.

Rays Blog https://mesoandme.wordpress.com/2015/06/28/sunday-122/?fb_action_ids=946381265382691&fb_action_types=news.publishes

Living With Mesothelioma -My Diary- Goodnight to another Mesowarrior when will it stop, Breathing problems in the humid air.

What a sad sad day yesterday was. People laying on a beach having a great holiday on minute and dead the next because of a crazed Gunman. 2 little boys stabbed by a man, Then the poor man in France decapitated. So much killing I despair what the world is coming to and then I had the sad news of the death of a Mesowarrior.

I  joined her daughter into the Mesowarriors group when sh contacted me through facebook as her mother had only just had the usual story of us warriors. The fluid in the lungs at the new year and going down hill so fast. I suspect she had the fast growing Mesothelioma

So many deaths It really does make you so sad.

I had a great time in the garden with Ray as we cut down my flags (Iris’s) and did a general tidy up.

Here you can lose your thoughts and work everything out but all I got was aching muscle’s in the leg. It became hard to walk and also hard to breath in the humid air.

We decided not to go away but I wish now we had. Sometimes we need to escape and just enjoy ourselves. But I live by the sea so we will spend today in the garden and then walk on the beach later .

I just love where we live and can see why my Mum and Dad had bought a caravan when the retired and spent as much time as possible here. It seem strange taking photos of a scene they also had taken in the 1980’s.

Seasalter is between Graveney Marshes and Whitstable  and Herne Bay; and across the water we can see  the Isle of Sheppey. Also the Saxon Shore Way runs through so we see a lot of walkers in the summer, either marching along in groups or sitting down on the wall eating their packed lunches and chattering away.

Lighter

We see the oyster catcher come back from the oyster beds. We do live in a pretty area but we need the sun to shine like it is today

Yet we are in the countryside with green fields and orchards stretching for miles.

A lovely blog of a walker around our coast line alkers2.wordpress.com/2012/02/26/seasalter-where/

So the sun is beaming away and the promise of a heat wave coming at last we can put on the sun screen and just roast.

The only thing is that the air is so humid so this really makes our breathing feel tighter. It got hard yesterday and so i held my little face fan just by my mouth and found breathing was better. Trying to type got a bit awkward ha ha !!!

British Lung wrote a great piece to give advice about humid air.

http://blog.blf.org.uk/2015/06/looking-after-your-lungs-in-hot-weather/?utm_source=British+Lung+Foundation&utm_medium=email&utm_campaign=5822878_Supporter+newsletter+June+2015&dm_i=FWX%2C3GSYM%2C57YAND%2CCEQ21%2C1

During a heat wave extreme heat can force your body into overdrive as it tries to stay cool.  You start to perspire and you can become dehydrated and overheat. This can make you feel more breathless and make your lung condition feel worse.

If a heatwave is forecast, plan your day so that you can stay out of the heat.  Avoid going outside during the hottest time of day, which is normally between 11 am and 3 pm.

Make sure you have enough medication at home. If you haven’t, contact your GP practice to get more. You should also talk to your health care professional about having a written plan so you know what to do if you feel unwell.

Here are my top tips for looking after yourself in a heatwave:

1. Avoid the heat

Avoid the heat: stay out of the sun and don’t go outside between 11am and 3pm. If you have to go out, or have things to do, try planning your day to do them in the cooler parts of the day.

2. Keep out of the sun

If you do need to go out during the day, avoid being in the sun for long stretches, and wear loose, cool clothing and a hat.

3. Pack a bag of essentials

Take a bag of essentials with you such as any medication that you might need, plenty of water and a fan.

4. Reduce strenuous activity

Reduce or avoid strenuous activity in the heat (indoors and outdoors). Limit activities like housework and gardening to the early morning or evening when it’s cooler. The benefits of exercise are great if you have a lung condition, so make sure you exercise indoors in a cool, well-ventilated room or gym instead.

5. Drink cold water

Drink cold water regularly even if you do not feel thirsty. Avoid alcohol, which makes you pee more and causes you to dehydrate.

6. Keep your house cool

Try to keep your house cool. Closing blinds or curtains can help. Keep the windows closed while the room is cooler than it is outside.  If it is safe to do so, open windows at night when the air is cooler.

7. Take cool baths or showers

Take cool baths or showers, or splash yourself with cool water.

8. Use a handheld fan

Try using a handheld fan and let the cool air blow towards the middle part of your face. Hold it about six inches from your face. You may also find a floor standing fan or desktop fan helps. Do not have the fan blowing directly into your face, as this may cause you to inhale dust.

9. Eat as normal

Try to eat as you normally would – even if you aren’t hungry. You need a normal diet to replace salt losses from sweating. In addition, try to have more cold foods, particularly salads and fruit, as these contain a lot of water.

10. Check pollution and pollen

Avoid areas of high pollution, such as near busy roads. You can check pollution levels online, and if you have hay fever or other allergies you should also check the pollen count.

We are always helping each other with tips on how to cope with the disease. I love the way we are all together and such friends, I hate the way the numbers are growing though daily I add more people into the groups. I don’t know if it’s because the figure are growing or because we are more open and talk about things.

Rays blog

Update on my stale sweet purchase. I received from ebay an email advising me that I had been given a full refund from the seller. I contacted the seller to thank him for what was a surprise gesture. Mavis has had problems with her new computer. We sat together to sort it. Fingers crossed ….. Its been warm again so it was a nice walk round the park. [ 108 more words. ]

https://mesoandme.wordpress.com/2015/06/25/thursday-127

Living With Mesothelioma -My Diary-Summer walks-Saatchi Bill is moving through Parliament, Did you know how good Basil was.

The summer has shown herself at last and we can shed some clothes and stroll in the warmth of her breath. We got up early and I showered and walked Louis out in the early morning sun. The world was so quiet and so a new morning was just beginning as the sun was rising. The rays were so warm even this early.

Image result for pictures of a beautiful summer day

© Nirbhay Kwatra 9 years old wrote this poem bless him he has such an older mind to write his poems.

A Sunny Day

The sun was shining so bright,
having beaten the clouds in fight.

We wanted to go out for fun,
I wish the clouds could beat the sun.

Evening came and the sun went down,
We all went for a walk in the town.

Water was flowing down the stream,
While I was licking my ice cream.

The stars shone brightly in the sky,
they finally showed all their might

I waited for Ray to wake up and had his breakfast, the dog got another walk up the lane while I did the housework. Off to the shops where I bought fruit and vegetables as I have made a shopping list for a healthy eating week. Mango’s avocado pears for a salsa lemon and limes food for the summer.
I made this for dinner to go with the meat I had cooked made with dicing the mangos and avocado’s mixing with chopped onions lemon and lime juice and a dash of sweet chilli sauce I watched for Rays face to pucker up in  a Ekkk!!! it didn’t come he really enjoyed the fresh taste. Phew!!
We had trouble with my computer. It appears there is a bug on Windows 7 pro when you buy a new hard drive. It wanted to load new updates but it goes round and round in a loop after being on all night we had looked the problem up.
So after a lot of mucking around we have the computer on and go in and turn updates off. We have to see if that cures it. Why do they muck around like this. Dont they ever check their program’s.
If you ever get the problem just google, all the answers are there.
After lunch we went to our park. So many people are finding the park today. I use the walk to try to build up the muscles in my legs as after the chemo days my body is so weak. We have a busy July coming up with lots of visits to London so I have to try to build myself up more. The car park always has a lot of cars in where people go on long round walks to Blean Woods.  envy them. I used to be able to walk to Canterbury now I can only walk around a small round walk but throwing the ball for the dog makes it longer for him and he comes back to the car worn out.
Back home I worked on the computer and it all seems ok now fingers crossed.
The Asbestos world is very much full of the Asbestos in the Palace and the House of Commons. With everyone maybe having to move out.
My best bit of news from the Saatchi Team was the Bill has got  through to the House of Commons. Now we can get on with debating the Bill as we have wasted enough time.

Where are we now?

First of all, all the amendments made in the House of Lords, which won over the support of the Lords, remain.

Second, there is much more time available now for MPs to debate the Bill. We are not faced with a looming general election and we are at the beginning of the new Parliament. This means that MPs can debate and amend the Bill.

We know that government ministers support the Bill, as does Labour’s shadow health Minister Andy Burnham. So, it has a good chance.

But there is, as you know, genuine opposition from some medical bodies, including Royal Colleges and the BMA. Many have changed their positions over the past two years and we hope we can persuade them to change their minds back again to supporting the Bill, as it develops.

Lord Saatchi listened to his colleagues in the Lords and amended the Bill and now MPs will have their say – and through them, so will all those – patients, doctors and lawyers – who have an opinion.

This is democracy and we hope all will join the debate and make this Bill a success.

I came across this very imformative blog on herbs

http://www.alchemysticarts.com/blog/2015/6/5/basil-herb-profile Wendy Rae Herbalist, Spiritual Counselor, Reiki Master / Teacher

Did you know that basil has the same effect of anti inflammatory relief as aspirin?

Did you know that basil originated in India?

Did you know that basil is a great healer of blood vessels and can reduce cholesterol levels?

MORE BASIL FACTS:

Basil is high in magnesium.

Basil can help arthritis pain and inflammation.

Basil is a great source of iron, Vit C, calcium, and potassium.

Use basil raw (like in pesto) or at the end of the cooking process to retain the healing oils that are so beneficial.

One serving of basil gives a person 60% of their daily value of Vitamin K.

Basil’s flavonoids can protect cell structure from radiation.

Essential oil of basil has been shown to be effective against Staph infections.

WANT MORE?

Basil is a great tonic for the kidneys and preventing stones.

Gargle with basil water for a sore throat.

Combat mucus with basil (its the high magnesium content).

Relieve stress with basil scents: crush the leaves or add a little basil essential oil to your pulse points.

Chew on basil leaves to get rid of those pesky canker sores.

Add basil essential oil to your homemade bug spray.

Rub crushed basil leaf on bug bites for relief. (Works on ringworm, too.)

Add dried basil powder to your homemade herbal tooth powder for its anti-inflammatory properties.

Basil is so incredible, I think we should start a world campaign of throwing basil leaves everywhere and rolling around in them. Just think of how happy everyone would be. Or…. we can just eat pesto?

Living With Mesothelioma -My diary- Asbestos in the Palace now, We have a problem with Lorries in Calais So many problems

I have been so lazy and not written the past few days. maybe you as a reader have been glad of the rest as well.

I have been so busy on the computer which is sad as it means more and more Mesowarriors have need my support. The first contact through my blog or facebook and are depearte for knowledge and support. This tell s me that the NHS id letting people down. Some hospitals are still wonderful but some are not. I would never believe there was a post code lottery but I have to admit there is.

We really do have to educate all oncologists about asbestos and mesothelioma.

I feel now the House of Commons and Buckingham Palace are in trouble with Asbestos things really might change. With the Queen having to have her office moved and the Prime Minister surely the will realise that Schools have to be moved and sorted Maintanence work costing as much as £150m is needed for the central London palace, with the BBC quoting sources as saying there were “significant amounts of asbestos” that needed to be removed.“One option is for the palace to be vacated,” a source said.The £150m sum depended on whether the refurbishment was carried out in one go or staggered through a rolling programme.Sir Alan Reid, keeper of the privy purse, said: “Over the coming years, the maintenance of the estate and in particular Buckingham Palace will present a significant financial challenge. We will continue to work closely with the Royal Trustees to ensure that the funding for the Royal Household reflects that challenge.”

http://www.cityam.com/218700/buckingham-palace-could-be-vacated-remove-asbestos-upkeep-presents-significant-financial

So with the House of Commons Under a proposa for basic repairs – such as improving fire safety, removing asbestos and restoring damaged stonework – would cost an estimated £3.9bn.

A higher-spec version of the partial move-out, with some of the same extras as a full move-out, would cost an estimated £4.4bn.

http://www.bbc.co.uk/news/uk-politics-33184160

Gosh the cost of removal is costing this country Billions. Can we keep going on like this. Maybe we should all move out and go to the moon to start again.

Then on top of all this the country seems to under siege from the poor people in other countries abandoning the unpleasent landthey live in and moving to our small island. I have been watching all the terrifying pictures

http://news.sky.com/story/1506994/migrants-storm-trucks-in-calais-port-strike

We in East Kent have talked about this problem for years and people were poo hooing us and saying they never saw anyone when they came to Calais in their Motor Homes Well they couldnt be looking as we are now proving we do have an enormous problem and an enormous ammount of people trying to get here. Kent is the first port of call and our hospital is duty bound not to turn anyone away,

To my way of thing this is the Government again. Closing their eyes to what is going on and I liking it to Asbestos and the problem that could have been solved so easy in the 60’s 70′ 80’s. Why do they wear blinkers and have Tunnel vision.

If –IF they solved the problems as they happen we wouldnt get the emergencies we get now.

This is causing a huge problem now and very sad for Im so scared of it ending in bloodshed.

Well of off my soap boax I did have a great idea put before me on Facebook

The shopping Trolley bags.

I love them and of coarse I ordered them straight away.

Holywell Bay holiday summer

British Lung have publishe some good point for looking after our Lungs in hot weather –If we get any thats is .

1. Avoid the heat

Avoid the heat: stay out of the sun and don’t go outside between 11am and 3pm. If you have to go out, or have things to do, try planning your day to do them in the cooler parts of the day.

2. Keep out of the sun

If you do need to go out during the day, avoid being in the sun for long stretches, and wear loose, cool clothing and a hat.

3. Pack a bag of essentials

Take a bag of essentials with you such as any medication that you might need, plenty of water and a fan.

4. Reduce strenuous activity

Reduce or avoid strenuous activity in the heat (indoors and outdoors). Limit activities like housework and gardening to the early morning or evening when it’s cooler. The benefits of exercise are great if you have a lung condition, so make sure you exercise indoors in a cool, well-ventilated room or gym instead.

5. Drink cold water

Drink cold water regularly even if you do not feel thirsty. Avoid alcohol, which makes you pee more and causes you to dehydrate.

6. Keep your house cool

Try to keep your house cool. Closing blinds or curtains can help. Keep the windows closed while the room is cooler than it is outside.  If it is safe to do so, open windows at night when the air is cooler.

7. Take cool baths or showers

Take cool baths or showers, or splash yourself with cool water.

8. Use a handheld fan

Try using a handheld fan and let the cool air blow towards the middle part of your face. Hold it about six inches from your face. You may also find a floor standing fan or desktop fan helps. Do not have the fan blowing directly into your face, as this may cause you to inhale dust.

9. Eat as normal

Try to eat as you normally would – even if you aren’t hungry. You need a normal diet to replace salt losses from sweating. In addition, try to have more cold foods, particularly salads and fruit, as these contain a lot of water.

10. Check pollution and pollen

Avoid areas of high pollution, such as near busy roads. You can check pollution levels online, and if you have hay fever or other allergies you should also check the pollen count.

http://blog.blf.org.uk/2015/06/looking-after-your-lungs-in-hot-weather/?utm_source=British+Lung+Foundation&utm_medium=email&utm_campaign=5822878_Supporter+newsletter+June+2015&dm_i=FWX,3GSYM,39NCPT,CEQ21,1

images

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