A Diary Of A Mesowarrior Living With Mesothelioma – Hazmat Pro’s Web Site has gone live

The link to my eBook  is now available https://www.smashwords.com/books/view/596094

It has really taken off and we are being asked to write and publish  book three, so  we will to talk  about the trial, only until I have finished in May 2016, the 2 years, I felt I shouldn’t really publish until Merk and the Royal Marsden are happy for me to do so. Something I will have to chat about to them both.I will be talking at the iMIG Conference April 2016 and I hope Prof Dean fennel will do our Combined talk as we did in this Video.

Well its been a very relaxed weekend at last but now Christmas is looming in front of us so we are settling down to welcome December in.

I have sat on the computer and bought all the Christmas Presents. No crowded shops just Amazon and Ebay and its all done.

The cost of postage has gone up I dread to think what its going to cost to send the items but its the thought that counts they say.

We received the news this week that Ray has to have his cataracts done. This came about when he went to buy new glasses and he couldn’t see the opticians list of letters, just one eye is very bad now. The appointments are being made and it will be done in our walk in surgery so that isn’t so bad.

Cataracts are cloudy patches that develop in the lens of your eye and can cause blurred or misty vision. They are very common.

The lens is the transparent structure that sits just behind your pupil (the black dot in the centre of your eye). It allows light to get to the back of your eye (retina).

In some people, cataracts develop in the lens as they get older, stopping some of the light from reaching the back of the eye.

Over time, the cataracts become worse and start affecting vision. Many people with cataracts will eventually need surgery to remove and replace the affected lens.

Cataract surgery involves removing the cloudy lens through a small incision (cut) in your eye and replacing it with a clear plastic one.

I said well now Im on the mend its your turn now. Bless him, what wit new teeth and new eye sight he will feel a new man.

We launched Hazmat Professionals new web site Friday so that’s it  we are in business and The Foundation is really going to happen.

http://hazmatprofessionals.impress.ly/

 

The Asbestos Strippers are joining up which is the main thing and they will now have a voice for them.

So Hazmat Pro has the backing of some wonderful legal and business minds and a couple of very devoted Directors and ME!!!!!! So happy to be able to put my name to this and see my dream of raising charity money for Mesothelioma Research. Im very focused on the future of the wave of danger of Mesothelioma that is happening that the Demolition of buildings and the stripping of Asbestos will produce.

Talking on facebook last night to a section of them I said that when Steph Buxton contacted and asked if I would  Patron the Foundation she was talking of strippers I thought she meant the sort I had met at hen Nights. ha ha !!!!

Rays Blog 

I had a busy day. This morning we went to the dental technician. Me to confirm the colour of the 3 teeth added to my plate. £150 worth. Mavis for a bite test. I published mavis`s new book into an Ebook today. Just visit our web page under mavis book. My new pc came so Ive been setting that up. I have not done any painting been tooo busy. Tomorrow got an eye test more expense.

https://mesoandme.wordpress.com/2015/11/26/thursday-142/

 

 

A Dairy of a Mesowarrior Living With Mesothelioma — Great news about Keytruda in Australia

A wonderful Statement from Australia on their Asbestos Awareness  day

27/11/2015 – NSW – Australia
BIG NEWS FROM THE DUST DISEASES AUTHORITY
I have had confirmation from the Dust Diseases Authority that it will be funding Keytruda as last line treatment for mesothelioma, for sufferers registered with the DDA – this means a sufferer must have been employed in NSW and exposure was determined to occur during this period of employment. Here is a summary as I understand it:
1) A sufferer will need to have exhausted all other accepted treatments.
2) A sufferer must display the right markers – only about 20% of sufferers have these.
3) A sufferer will be scanned and assessed after 4 treatments to find evidence the drug is actually working – researchers believe four treatments is the benchmark number. Subsequent treatments will be in blocks of four, and be subject to positive improvement.
4) Application must be made by the treating oncologist – not the sufferer – so if you are registered with the DDA and feel you may qualify, talk to your oncologist.
This is great news, it is a start, and does give hope, but it should be noted Keytruda is very much in its early days in being used to treat mesothelioma. It has not gone through the trial process, and is an unknown quantity in many areas. But it would seem to be working in a positive way on some people.

Remember, you must be registered with the Dust Diseases Authority and meet quite a bit of criteria, your treating oncologist is the best person to talk to, to see if you qualify.

Warmest regards and blessings,
Rod Smith
Awareness and Support Co-ordinator
Bernie Banton Foundation

This is very exciting news as I have wanted the same in the UK where the drug is given for 4 infusions then a scan would show which patients it was working on. Those that fail can get back to chemo or go on other trials but those that the drug is working on would carry on with the drug.

I have suggest this to Merck here in the Uk so maybe we might also be successful.

I went and had my 2nd appointment for my new teeth today and ugh!! what we put ourselves through. Having so much plastic put in my mouth to then do the bite test, I thought I was going to gag.

Anyway the dentist can get on with making them now. A bit odd seeing all those teeth sitting on the bench in various forms of being made. You can imagine them all chattering away to one another when they are on their own.

I have then been shopping and then came home and finished the Kitchen clear out so I have been through all the house now. Im not going to look at the shed  until spring.

I have still be getting so many emails from Doctors and friends congratulating the great news of my scan and the book is selling really well.

Ray has published our ebook  It is in Dollars so it is about £2.50 https://www.smashwords.com/books/view/596094

 

Please remember not to buy crayons for the Christmas Stockings

Brands of children’s crayons and toy crime lab kits have been found to contain asbestos, according to a report by a health advocacy group.

Tests commissioned by the Environmental Working Group Action Fund(EWG) found four of 28 boxes of crayons contained asbestos.

The crayons were marketed under the names of popular children’s characters including Mickey Mouse, the Power Rangers and Teenage Mutant Ninja Turtles.

The EWG said that microscopic asbestos fibres can be released as the crayons are used, with an average child getting through 730 crayons by the time they are 10, according to Crayola.

Two of 21 tested crime scene fingerprint kits were also found to be contaminated with asbestos.

Those kits, which involve children using dusting powder to identify fingerprints, could see asbestos contamination through airborne fibres.

The EWG said all the crayons and toys were made in China and imported to the US.

Dr Philip Landrigan, professor of paediatrics and preventive medicine at Mount Sinai Hospital in New York, said: “Asbestos in toys poses an unacceptable risk to children today as it did in 2000 and 2007, the last time tests found the deadly substance in these children’s products.

“Clearly some toy manufacturers haven’t done enough to protect children and others from asbestos in consumer products.

“Therefore, it’s high time the federal government bans asbestos in consumer products.”

It was unclear if the companies whose names or trademarked characters which appear on the packaging of the crayons have any role in their manufacture.

Rays Blog

I had a busy day. This morning we went to the dental technician. Me to confirm the colour of the 3 teeth added to my plate. £150 worth. Mavis for a bite test. I published mavis`s new book into an Ebook today. Just visit our web page under mavis book. My new pc came so Ive been setting that up. I have not done any painting been tooo busy. Tomorrow got an eye test more expense.

https://mesoandme.wordpress.com/2015/11/26/thursday-142/

 

A Diary Of A Mesowarrior Living with Mesothelioma My Book 2 is Published today

A great day for Ray as he has at last published my Book 2. It has taken a lot of hard work and then as we published we had our great news of the MK3475 (Keytruda) that has produced such wonderful result. But in away that is a good thing as book 3 can be how I live without Mesothelioma. That sounds great doesn’t it. So much hope in front of us.

All the Proceeds go to Hazmat Pro Foundation  as Im the Patron, for Research of Mesothelioma Treatments

I now have to sort my body out. I need to build muscle as the strength has all gone and walking is a problem. I loose balance as I walk for to long. I have to stop and think about my central line to get back upright.

My hands still lock up and I drop glasses of drink over me. Company think I have a drink problem, which I do not.

Itching i back but that is the drug causing dry skin so I have to oil every day.

Wind is a naughty one but I have found out that is the rug and I thought it was from Chemo. So when I get all these sorted I will be better.

I went and had a fitting for new teeth today. That was something I so wanted to do but thought that if dying it was a waste of money. Well that’s ticked today.

I have been really throwing out and sorting the den so that I start my new life with less clutter.

My Neighbour came round today with a bottle of Bucks Fizz for me to celebrate that he to has been given the all clear and discharged from hospital. No more visits as he has been cancer free for 6 years. We had a long talk and were so happy for each others news. It is a huge relief and yet so unbelievable when they say Cancer has gone.

I have just got to believe it the  last 2 days. All my family and friends know now so we can sit back and have a great Christmas. Each year I have been thinking I had seen the last one now I have lots of Christmas spreading before me. I couldn’t sleep last night and I sat in the dark drinking a bottle of apple juice. Just thinking so many thoughts. Remembering my beautiful Mesowarriors that I have met and lost . So many dear friends

I will carry-on doing all I do for the Mesowarriors I love it when i get them into treatment and trials and they begin a journey of hope. Today I had a message from a wonderful daughter whose Mum I have been helping she said —

THANKYOU for everything you have guided me to doing!! Mwah.xx

I look forward to her Mum being comfortable now as she has had so much pain.

I don’t do all this for the thanks but just for the treatment people get and need , my dear friends they suffer so much in the fight to live.

Its made me realise I should have gone into nursing all those years ago. I was in the right place as I went to Rochester Technical School and was in the same class as the future nurses. I chose Domestic Science for Diet and cooking and became a chef. A path I should have changed.

I had to show you this one from Tony Rich (a facebook friend)  Date unknown although, based on a few details in the photo, one may estimate age to be approx. circa 1920-1930 ; location Ambler, PA.

Its even thought that the clothes they are wearing are made of asbestos. Just crazy crazy crazy !!!!!!!

Rays Blog

At last Ive published mavis`s second book all 320 pages of it. Its taken me over a year to edit it and get it to this stage. I have almost given up many times. If anyone is interested ,details available on our web.onestopmesothelioma.co.uk Its been priced at £5.99 Book 3 is on the burner. But with Mavis`s recent good news I will have to make a lot of changes. [ 58 more words. ]

https://mesoandme.wordpress.com/2015/11/24/tuesday-163

 

 

 

A Diary of a Mesowarrior Living With Mesothelioma and speaking at the NLCFN

My Invitation to speak at the 2015 Annual Conference

The NLCFN is delighted to announce details of the Annual Conference, which is taking place on 19th-20th November 2015.   Come and share best practice with your colleagues and learn all about the latest developments in the diagnosis and management of lung cancer and mesothelioma.

The venue is:
Beaumont Estate
Burfield Road, Old Windsor, Berkshire, England, SL4 2JJ

So Off we set and what a wonderful venue.

Within 40 acres of sprawling grounds lies the Beaumont Estate in Old Windsor.  Dating back to the 14th century, the Estate was a family home for many years until 1854 when it was sold to the Society of Jesus as a training college for novices and then it became a Roman Catholic boarding school. Nine years later a chapel was built by renowned architect Joseph Hansom with a barrel-vaulted ceiling, carefully painted in the early 20th century by Romaine Walker.

Once the school closed in the late 1960′s, Beaumont Estate was purchased by British computer company ICL who used it as their training centre. In 2003, Hayley Conference Centres bought the venue and developed it into an upscale conference venue. The original White House in the grounds and the Chapel were left untouched and under-utilised until Principal Hayley Hotels and Conference Venues acquired Beaumont House in 2007.

In June 2008, Beaumont Estate embarked on an ambitious refurbishment programme to completely renovate The White House and restore the Chapel. Just 5 months and £8.1million later and the beautiful, exclusive executive suite that is The White House re-opened and the magnificent Chapel was unveiled.

The White House and Chapel are just one part of Beaumont Estate and there is 40 more acres of conference, meeting and training space in Beaumont Estate and the Conference Village for you to explore.

http://www.beaumont-estate-windsor.co.uk/photo-gallery/

Thank you to all the Sponsors for a wonderful Conference Ray and I enjoyed it so much.

In 2 days we have had to take in so much Information but the thing that stands out the most is that we have a wonderful team of CNS Nurses looking after us Lung Cancer Patients. I cant thank you enough for the wonderful company of all of you and so many of you. I think there must have been over 300 people there. Am I rght ??

Wonderful Doctors gave their time.

On the whole I think Immunotherapy has come out well that it is the way to go so I was so pleased to be able to announce Im Mesothelioma free now. One Doctor Said that  It has been said if you live 3 years with Immunotherapy you can live 10 years. Whoopee I have lived 2 years almost -well in may–  So I will be able to prove that x

I was able to ask so many questions and I thought people would say “Oh no not her again ” But it was not so Everton loved I asked so many Patient questions. They do love to hear what a patient has to say

I met so many Lawyers and so many old friends from other or Facebook Friends.

Ray and I did a Double Act again and it was well received. Everyone in tears again even me I couldnt see the words for tears. I gulped and carried on.

So emotional to be able to tell everyone Im Meso Free On MK3475

Unknown to me a man from Merck was there to listen to me. He walked over and was able to shake his hand but the beam on his face said it all.

He gave me his card and is going to arrange for me to talk to his team. I will love that and agree to talk to the men who dont get to talk to the patients much.

Dr Melissa Phillips discusses @AACR 2015 study on #immunotherapy for #mesothelioma

#NLCFN Dr James Spicer explaining the inexplicable… The immune system and immunotherapy for lung cancer

So much information to take in.

My Very Own Doctor Shah on Mastermind. i said if he didnt win i would sack him. Opps I was told no heckling from the Audience

So the end of the conference came and we all said farewell to one another.

We have had a wonderful time and Im so pleased I was able to give my news on the right day of Lung Month and at the

National Lung Cancer Forum for Nurses

 

A Diary Of A Mesowarrior Living With Mesothelioma -Scan Results Have Really Shocked

We got to the Royal Marsden very smoothly not much of a hole up.I was having bloods done early and waiting for the Doctor in no time.

It was scan result day and so we sat waiting. Well I didn’t need to get a print off this time. There is no active Mesothelioma in my Lungs.

The tumours are there but there is no active Mesothelioma in them.

We couldn’t take that in, there was a silence and we just looked at one another.

The Doctor said had we any questions and I didn’t but I have now. I know I can keep emailing and asking

I Still stay on the trial that goes on until May 2016 but we have to be careful that the Drug doesn’t cause  any Inflammation on my lungs. I do get out of breath but he said it will be like when I first lost my breath, really difficult.

Any of the organs could have inflammation so I will keep my eyes out for any trouble.

Also the Immune system will work in a way that it recognises the mesothelioma as an enemy and  attacks it building up a little army that remembers when it see the Mesothelioma again and attacks. So the effects last a long time and stops any tumours from progressing again.

Being honest and saying that the treatment has worked for you and currently there is no active meso but there is still a long way to go  to getting a cure for this terrible disease but this is a step in the right direction I do remind people that treatment unfortunately doesn’t work for everyone. We mustn’t give false hope. But We can give hope xx

So I’m still very lonely in the UK and the only Meoswarrior but hopefully they will get the Phase 3 going in the New year.

We walked away to the waiting room to try and get our minds around it all and then went to the Restaurant but I wasn’t really Hungary.

Back in the waiting room and we didn’t have to wait long  and soon called because the drug was ready. There was lots of laughter and cuddles as each person heard the news.

That was it the drug in me again we set off for home where I told a few friends and than my Son and DIL who are as shocked as we are. We have been through so much in 7 years come February.

I felt very weird in the car and fell asleep. On waking I did feel so much better.

My son says we will crack open a Bottle when we visit tomorrow.

We did Secret Santa Draw on Skype tonight with my Crazy friends,

sisters that make us laugh so much .

Its been a very happy day if a little shocking xx

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

 

 

A Diary of a Mesowarrior Living with Mesothelioma — I have recovered from last weeks travelling and Excitement. RIP my wonderful Paris

I have been so exhausted after all the excitement of last week. Ray was good and kept his going

https://mesoandme.wordpress.com/

He has suffered so much with his teeth and I have had to make sure I served very soft dishes. Stews and pot roasts, mashed potatoes, soups. It has been time consuming as he then took ages to eat.

It has got better and better.

I have been working hard to set up the HazMat Foundation Face Book. Setting up what info to put on it. It all takes time to build things up and to answer so many questions about the Foundation.

Im amazed and please at how it has been accepted so far. ( Well by most, there was always going to be some doubters ) But most people are pleased that Im the Patron. Understanding what we have in mind I thought would be hard to explain but people have been very kind.

The web Page is on its way and once that is set up we can cascade.

Most of all The young men are making friends with me and are even sending their problems on site. Even problems of HSE there is a whole new world of problems when it comes to stripping out the asbestos.

I would love to  go on site and work with the equipment to really learn from the operative point of view.

I hope I have many years as Im at a very important part of my life. I need time to make changes.

There is fun time as a plan is being put in place to make a video.

Australia made a great one.

At first I thought Cheek!! making asbestos fun but then I watched and the point comes right across.

I have found a very devoted Partner in all this When Steph and I became friends on face book. We then found we had the same passion for keeping the young people safe that worked in the Asbestos Stripping Industry.

She wrote

Many of you have asked what I’ve been up to…. those of you who know me well will know how passionate I am about educating others to the dangers of asbestos. After loosing a dear friend to mesothelioma (an asbestos related cancer) I decided to create an Asbestos Charity where other asbestos victims could benefit amongst several other areas. So here it is: HazMat Professionals Foundation. Our Patron is the amazing Mavis Nye. Please share far and wide. Ask us about fundraising…https://m.facebook.com/HazmatProsFoundation/

Hazmat Professionals Foundation

Community

This is one half of  HazMat Professional as the other half is  the real working side.

Steph has written

you can join an organisation that will take away all your pains. Better working conditions? You got it. Increased safety – we got that too. Better rates of pay? – yep you guessed. You asked, we created. From next week you can register your interest.

The Web page should be live by the end of next week for all to see.
We will act as advocates for the workers, ensuring safety and better working conditions.

This is what has been so exciting. Being at the beginning of something so new.

My Dream is coming true and I will leave a legacy. Something I wanted to do and never knew if it was possible.

I have said to Ray I have always said, that your life is mapped out. Boy! is this proving true. I feel as if I’m not in charge of my life but my life is in charge of me. I just go with the flow. What is around the corner? I don’t know but what ever it is I feel it is all good and is what someone or something has planned for me.

---

I have to mention today the awful killings in My wonderful City of Paris. I love Paris as we have had so many great romantic times there. We never stay in huge hotels but small home like Places where we have lived with the Parisians in very arty places.

Little restaurants and streets of shops where the owners come out and wash the pavements every day.

The traffic waking up ans people off to work.

Now the streets are rivers of blood. 120 people are dead . I’m so sorry and send my love to the poor families that have had the news this morning that their loved ones are not coming home.

A poem written sums it all up xx

Blood In Paris – Poem by Akhtar Jawad

Alas! The city of love and fine arts,
the city of romantic lovely hearts,
where in the bosom is a pink rose flower,
the amazing and enchanting Eiffel Tower,
the blue perfume of Evening in Paris,
the winds feel proud on dancing in Paris
where art promotes love, peace and romance,
where one is free to sing and dance,
where couples forget all their fears,
where coral smiles can wipe the tears,
wherever I look I see beauty-abundance,
smiling colors and dancing fragrance,
that inspire the brush, that inspire the pen,
who are the extremists, are they men?
What’s their faith, do they believe in ethics,
No, they’re satanic tools, in fact,
I can only condemn, that’s how I react!

A Dairy Of A Mesowarrior Living With Mesothelioma -I Have Had The Honour of Patron Of HAZMAT Foundation Bestowed On Me. Im so Happy

Well where I start to tell you about this weekend.Only one thing to do and thats start at the beginning.

Wednesday we travelled to leave the dog with our son and DIL.

On Thursday we caught the trains to Birmingham. I say trains as we had to change but we did get there OK.

Contacted Steph and she said Simon is waiting at Marks and Spencer’s just ask anyone. We did and everyone directed us to the High Street but Steph had meant the brand new one in the station.

Finally went back and found Simon who is with my friend Ian who I already knew as a cyber friend.

Then the fun began. Birmingham at the rush hour with an accident on the M6 and a firework display do not go together.

We finally got to Walsall and to the Calderfields Golf Club.

We were soon in our room and I had a shower as a knock on the door and the hairdresser appeared.That was very relaxing.

We all met up in the dinning room

Steph introduced HAZMAT Proffessionals to the Board and so all was revealed.

Iam now the proud Patron of HAZMAT Foundation. Im now a Patron of a Mesothelioma Charity where they are committed to Research. It was my dream to leave this legacy and i have achieved it with the backing of some lovely people.

Steph and Simon Buxton have bestowed this wonderful title on me and Im so happy to accept. But I thought it would be lovely if Ray gave a speech as to how he felt having worked with Asbestos all those years ago and what it was like to bring it home on clothes to contaminate his wife and maybe family.

His speech was very moving  even Dominic Kitchin  a Physiological evaluator with the Government. He is such a powerful young man and he has taken Rays speech and is putting it around the world as a exmaple of a representation of a Carer.

Mine was about what had led me to talking and fighting for the young men that work with Asbestos now. The men that are stripping the asbestos from our buildings in very hard conditions. The dehydration working in masks and protective clothing and in cages where they have to take off and go into a decontamination room every time  if they need the loo or a cup of tea.

I was presented with a lovely Bouquet of flowers.

The evening carried on with  Marcellus Lindsay the Mentor presenting how the Company will work for the men. 

It was all very interesting to be in on the start of something so big as HazMat Professionals! The team here are so geared up ready to lead the way forward. The soft launch to you all will be the end of November.

 

 

 

 

 

We carried on having a long talk and a laugh as also my Lawyer friend from Moore Blatch Solicitors and Eman Hassen his Legal assistant were there but it was soon 11pm and bed time.

So that was it bed and sleep came very easy.

Early rise and breakfast with everyone saying their goodbyes after a full English.
Steph dropped us all off and we got the train home.

Right at the last I did mange to realise I had the wrong case and had to rush back to the carriage to put it back and grab mine phew. embarrassing.

We got back then to our sons and a very happy Louis..

 

 

 

 

 

 

 

Saturday My Son DIL and Ray had a surprise for me, something they had planned early in the year and were so worried I might not even be around to enjoy it. Well we all know Im still here and we set off -where? I didnt know. We went past Reading, Bath, down the M5. I said we were going to Minehead as they forgot the Sat/ Nav was on but that was just to fool me and we pulled into Bridgewater.

I could see carnival adverts but nothing like what I saw.

The Festival of Lights. They had booked a seat as well.

I cant describe the wonderful things I saw so I will put on a few photos.

 

 

 

 

 

 

 

 

 

http://www.bridgwatercarnival.org.uk/

History

Bridgwater Guy Fawkes Carnival

The origins of our annual carnival in Bridgwater can be traced back to the Gunpowder Plot of 1605 when Guy Fawkes and his fellow conspirators, failed in their attempt to blow up the Houses of Parliament. That story is well known to everyone, but what is not so widely acknowledged is that it was King James 1st and his parliament who decreed that the events of 5 November should be commemorated annually with the lighting of bonfires, a tradition which is celebrated across the nation to this very day.

Maybe it was because Bridgwater was staunchly protestant in those days that the townsfolk celebrated with greater vigour than anywhere else, creating a tradition of widespread merrymaking on the annual anniversary of the fifth . Or maybe it was just an excuse to enjoy an evening of fun around the bonfire before the long, cold nights of winter really set in.

Whatever the reason, those celebrations have now grown into the magnificent spectacle which takes to the streets of Bridgwater each year in early November.

The early years unfortunately were not recorded local newspapers did not appear in the town until the mid 19th century but we do know from the parish records of St Mary s Church that John Taylor and his two children were killed in a gunpowder explosion in their home in November 1716. Early casualties which were no doubt caused by the manufacture of the home-made Bridgwater Squibs, the unique fireworks which are still very much a part of our carnival tradition.

From journalistic records we can trace the development of our carnival from 1847, making Bridgwater Guy Fawkes Carnival the oldest event of its kind in the United Kingdom, and, it seems it was the Victorians who were instrumental in establishing the format of the carnival for future generations to enjoy.

Celebrations in those days concentrated around a huge bonfire which was built on the Cornhill, right in the centre of the town. From all corners of Bridgwater, townsfolk paraded to this bonfire, many disguising their identities in costumes and masks, a practice which enabled them to get up to all sorts of harmless mischief. Once assembled, effigies of Guy Fawkes, the Pope and others who had upset the local population, were added to the flames. From early evening, hundreds of Squibs were ignited in the town centre and a night of merrymaking ensued until the early hours.

It was the celebrations of 1880 however which was to change the course of the carnival forever. The evening of the fifth that year began so well, but the usual good humour and excitement gave way to ill temper and acts of violence, leading ultimately to serious disorder and riot. By 1 o clock in the morning the bonfire was still burning with plenty of fuel remaining to add to the embers. Most of the crowd had gone home but around 300 people were still making merry around the fire.

We had a hot chocolate and then watched the Squiblings —- I cant even describe this so watch the video please xx

It has really been a wonderful weekend and we have travelled over 1000 miles which is just amazing.

A Diary of a Mesowarrior Living With Mesothelioma -Keytruda Day At The Royal Marsden and my dieing swan act

Yesterday it was so foggy as we left Seasalter at 6am but not the pea souper of Monday it was clear in many parts and our journey to the Marsden was so good, just a couple of hold ups but on the whole good.

I had to have a scan at 8.30 so I asked if I could have my bloods done first and lucky enough Lorraine was free to do that. I said “I have been here so long Im ordering you around now”

We went to the scanning dept and I started drinking my water and signed in. If the scanner is in use upstairs we go to the one down stairs.

They are redecorating and there are new fire doors being fitted. I was pleased to see that they were fitting new frames as well as the schools surveys missed out the fact that there is asbestos in the frames, a fact I was told at a conference that amazed me.

Anyway I was called for my scan and it was a new machine. Weird it wasn’t a Polo so much as a half MRI. it is shaped and when i was right up to the scanner it was claustrophobic.

Then Breath in and hold and it seemed an age before I got the breath out.

All done so we went back to see the Doctor. after having my PIC Line cleaned.

I explained about my funny turns and he said to first try and bring a sandwich as Im getting up early and having breakfast earlier than normal.

All rashes cleared and looking healthy but he said my skin was dehydrated still so keep using lots of cream and drinking fluids.

With that we left went down the lift to ground floor and I did a dieing swan over the rail of the basement stairs. I was really going out and a nurse came by and she got me a chair from the restaurant. They are new ones and she got told off. I heard he explain why she wanted it.

I sat down and the it was 2 nurses making sure I was coming back and talking ok. The 3 nurse appeared with a wheelchair.

I said I was ok and really didn’t need that. Why are we so stubborn when it comes to wheelchairs.

They all walked with me then until I sat in the restaurant and they left me safe.

I had a yoghurt and off back to Oak ward. I asked to see the Doctor. and he sat while I explained what had happened.

He said that the drug is causing different things and the rash, the fainting (due to a gland and the thyroid) is one of the side effects. It is also causing Clots and inflammation on the kidney and liver. This is why it has to be trailed properly ti find out what the long term side effects are as 6 people have died, not from cancer but from the drug.

My results from the scan were not through so I have to wait until next Mondays meeting where they will do measurements.

We then went down and had a lunch after saying goodbye to Richard and Lynne. Richard is doing well on the Verastem trial . Weird that it is doing so well in Phase 1 as drug hasnt done so well in phase 2 with the placebo.

But Verastem are working very hard and will bounce back as they have got the right idea and use the stem cells. They are 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.

Their latest statement http://phx.corporate-ir.net/phoenix.zhtml?c=250749&p=irol-newsArticle&ID=2102659&highlight=

I enjoyed a lovely bread and butter pudding and did feel very well again if a little head achy.

Ray had rice and just the sauce of the chicken sweet and sour as he has a very painful mouth after having his front teeth out. The had broken and so it was just the roots which wasn’t an easy extraction bless him.

With that we was able to go back to Oak ward and wait  for my drug which did come up at 3.00pm.

A woman was having a lovely foot massage as they do so many things at the hospital for the patients comfort.

I was intrigued as the oil was gently rubbed in and each toe was worked on then the foot and then the ankle. No wonder the patient went off to sleep.

All done we left and said goodbye, A doctor stopped to talked to me as we left  and I  said I didn’t know how it was as I didn’t have the scan results but he said there wasn’t anything to worry about he felt confident. Hmmm I feel he couldn’t wait and had had a sneaky look.

Oh well i will have to wait and not let scanexity creep in.

Journey home was good and we were in early and had a great evening

It rained all night though. So heavy but no fog.

Off to visit my Son and DIL as we are then on route for a conference in Birmingham Thursday. No time to be ill.

I have got to share this with you as Ray and I loved it so much the romantics that we are

.

.

A Mesowarriors Diary Living With Mesothelioma -Goodnight to a Mesowarrior -Halloween- What Are They Dumping In Our Seas

We have lost a dear mesowarrior today which is so sad. We are going through a tough spot as there have been deaths in Australia as well. It always seems to happen as we come up to Christmas.

I know it is sad what ever time people die but Christmas is a time for fun and families and we are sadder when it happens now. i think its because Christmas will never seem the same again for the families.

We also have some Mesowarriors doing it bad at the moment. several in hospital or in chemo. Now Steve is really becoming frail. He has always been travelling with me on this journey.

I don’t get to talk to him only if I have seen him at the Meso UK conference as it is Linda, his wife who writes the blog. Men don’t do they and yet it would be great to really know what was going through his mind.

http://doingsomethingpositive.blogspot.co.uk/2015/11/time-for-some-lifestyle-changes.html

Anyway this has been the first blog where I have had a glimpse of Steve’s thoughts and Linda wrote Steve started to say “I’m fine..” but then stopped himself and admitted that actually, he’s not feeling too great at the moment.  How do you respond to that, knowing that the cause of the problem is without a cure, and that hoping someone will get well soon is therefore not really an appropriate response in the circumstances?  –

Thats the problem there is no cure for Mesothelioma. Oh I know I have been so so lucky and Keytruda has been working but it isn’t a cure. I’m still terminal and I’m still in Palliative Care. and I have said to Linda “Many times I sit down to write a blog and really dont know what I will write, but they are the days I write a huge amount of my thoughts and I don’t really know where it has all come from. Like when you want to remember a name and then it falls into your head when you are dropping off to sleep. I understand that you say Oh I’m fine like when you go to the doctors and someone asks how you are and you automatic answer Oh I’m fine –so why are you at the docs ???”

Also My darling Tess did have Targets and we used to share them and giggle together. I used to visit her and did so just before she died, as I did Ronnie and I have visited many warriors in hospices but they have died just after one of my visits. It just gets so sad so very sad.

---

I have thrown myself into Halloween yesterday and watched the trick or treating, the streets were full of fun and laughter just a wonderful fun evening.Finished off with Fireworks

Halloween started off as a festival called ‘Samhain’, meaning summer’s end, and was celebrated by the Celts on November 1. It was believed that on this day, the veil between the dead and the living was at its thinnest.

Halloween grew in popularity in areas with Celtic heritage like Scotland where there was a romance attached to the many eerie stories of the holiday.

Trick-and-treating and carrying lanterns are seen as very American celebrations but they can be traced back to Scotland, specifically the poem ‘Halloween’ by Scottish poet Robert Burns.

Wiki says

Halloween, or Hallowe’en (/ˌhæləˈwiːn, -oʊˈiːn, ˌhɑːl-/; a contraction of All Hallows’ Evening), also known as Allhalloween, All Hallows’ Eve, or All Saints’ Eve, is a celebration observed in a number of countries on 31 October, the eve of the Western Christian feast of All Hallows’ Day.

So now we are in November so ray and I are on people’s walls on the Charity Calender we did

.

How did we ever get ourselves into that !!!

We haven’t down anything for this Christmas so we are planning for next year. one of our scatter brain plan’s helped by Angie our red-headed clown. Bless her.

---

Well now I go into a hard week. Keytruda on Tuesday and a conference on Thursday, which I have looked forward to for a long time now. I have all my new clothes ready and all the plans for travelling to Birmingham done.

So now just calm down and enjoy.

This is another meet up with Surveyors and Strippers the people at the fore front of cleaning our Asbestos from our world. Such a very important job and they must keep safe. I will blog all about it next Sunday as there are other surprises being planned by Ray ,my son and DIL They are not going to stop are they.

---

Heres is a shocking story of the day http://qz.com/534675/photos-new-york-city-sends-old-subway-cars-to-a-watery-grave-in-the-atlantic-ocean/

Can you understand why they would do this. Asbestos will be in the sea fish will feed and the asbestos will be carried anyway to the shore. Just what is being buried at sea for things to rust and poison our seas???

Between 2001 and 2011, New York City’s MTA had to dispose of approximately 2,500 old subway cars that had been replaced. And what better place to put them than the Atlantic Ocean?

Stephen Mallon, a New York based photographer, documented the final trip of dismissed New York subway cars from the MTA yard in Harlem to the coasts of Delaware, Virginia, Maryland, South Carolina, and Georgia, in his project Next Stop Atlantic.

In the past eight years, Mallon has documented the salvage of the US Air flight that emergency-landed in the Hudson River on Jan 15, 2009and explored Prelude, the world’s biggest ship. His body of work will be exhibited in November at the Mark Miller Gallery in New York City.

Arguably, however, his most spectacular work—and definitely the most surreal—is Next Stop Atlantic. Something about the images of subway cars being dumped into the ocean doesn’t quite add up, and seems more an art performance, a commentary on humanity abusing the planet, than something that really happened.

Well done for reporting this now STOP !!!

The MTA has stopped releasing carts to the bottom of the Atlantic in 2010, after concerns emerged about disposing of the asbestos contained in the cars—though Mallon told Quartz, the cars created no harm to the environment, in fact, they have been employed as tenements to a variety of fish.

“This is definitely one of the craziest [disposals] I’ve seen,” Mallon told Quartz.

---

Rays Blog —-was running about checking tv signals. For weeks now the Telly in the bedroom looses its signal. I thought first maybe the signal strength at night was lower. NO. Down to Bad weather NO Was the tv ok I know its not very old.NO. I checked the little blackbox outside. NO. I give up. A cuppa coffee later. Brainwave. The box in the back of the wardrobe.

https://mesoandme.wordpress.com/2015/10/31/saturday-129/