Diary Of A Mesowarrior Living With Mesothelioma. August Bank Holiday is a Wash Out.

Oh dear it just hasnt been a good Bank Holiday weather wise.

We didnt go away so Friday we washed walls with sugar soap and all the paint work. Washed ceilings with  a mop and it worked. then out came the paint pot and we have decorated again.

So yesterday I had a lovely day working in the garden cutting back all the summer growth and taking it down in a wheelie bin to the skip. Working together we managed this.

Thought I would get up today and finish but there was a storm all night and then a new storm this morning. Its not the thunder and lightening that worries me its the heavy rain. So monsoon as it beats down and floods everywhere so fast.

Huge puddles are left on the roads that are prayed up like a wall of water as the cars pass through them.

We went shopping and to walk Louis. The car park was full as everyone must be so bored they thought it would be a good ides to go shopping. So many bored children crammed the isles. I just grabbed some cheese and rolls and was pleased to get back out into the quiet fresh air.Ray had walked Louis so that was OK.

People had been brave and visited Whitstable but nowhere near as many as usual. Business has suffered again.

I had a call from Holland and a  Mesowarrior has told me he is going on a trial of immunotherapy if he is suitable not Keytruda But another drug –Great to hear this as drugs are being used around the world and gradually becoming available.

Just watching The worlds fastest Indian made 2005 and they talk about Asbestos Material I have to allow it as the story is about 1920’s
His bike runs to hot so they used asbestos cloth. We forget how Asbestos did save the lives of so many riders in the Motorbike and Motorcar racing world.

Textile Garments

Asbestos in Textile Garments and Other Safety Equipment

One of the properties of asbestos that made it so useful is the fact that it consisted of fibers which, like those of cotton, jute and even polyester, can be woven into fabrics – with the additional advantage of natural fire resistance. Fire blankets made from asbestos fabric were once a common piece of safety equipment used by fire fighters, the military, racing pit crews and industries in which workers ran the risk of burn injuries. Asbestos canvas was used to wrap boilers and steam pipes. Protective fire suits and headgear worn by firefighters, racing drivers and petroleum industry workers were lined with asbestos, as were the protective gloves and aprons used around blast furnaces in steel mills.

Burn injuries are extremely painful and debilitating, and there is little doubt that asbestos textiles and fabrics have saved thousands of people from suffering. Unfortunately the it was later learned that asbestos exposure led to mesothelioma, an incurable form of asbestos cancer that has affected hundreds of thousands of people over the years.

Textile garments woven from asbestos fabric were in wide use from the late 19th century through the late 1970s in a wide variety of occupations and industrial and military workplaces. They were manufactured by literally hundreds of makers and labels.

Hazards Associated with Textile Garment Products

New, unused asbestos textile garments did not pose any particular asbestos risk to the people who wore them, although textile operators were certainly at risk as they worked the mills and looms to weave large quantities of asbestos into fabric. When asbestos-based textile garments were damaged or became worn with age and use, however, the asbestos fibers in the cloth would begin to degrade and would become so fragile and delicate that they could crumble at a mere touch. Garments in that condition had the potential to release a steady stream of asbestos particles when they were worn or moved, and those fibers would have posed a major health risk to the people wearing the garments as well as anyone in the vicinity. Inhalation of asbestos fibers has been conclusively linked to the development of an asbestos cancer known as mesothelioma.
Link: http://www.mesothelioma.com/asbestos-exposure/products/textile-garments/#ixzz3kPFkTy00

A Mesowarriors Diary -Living With Mesothelioma -Louis at the Vets- Pictures of Asbestos and where it was found

Oh dear my little Louis has shaken his head over that last two days and we had to make an appointment for 5.10pm today at the vets.

We have spent the day working in the Den on computers. Its been a lovely day talking to many Mesowarriors and helping a couple of new ones. So desperate and lost and its great to be able to come up with links of information and doctors names to contact.by the time they say goodbye they are feeling in control instead of the blind panic felt when we first contact.

We were going away but we had to cancel and sort the dog as he walks around shaking his head. We did put some more Frontline on in case he had a tick in his ears as he did lay in the grass most of last weekend when we were camping.

When it was time to go I thought it would be very bad in town as everyone arrives for the bank holiday weekend, but it wasnt to bad and we got parked up and then the fun began.

The dog began to know where he was going and he become a quivering ball of fright,.We had to drag him into the vets and he sat in the corner right away from the dogs and cats that were in their waiting.

The vet finally called Louis Nye and we did get into the surgery,

The vet looked into his ears and said they were very clean so he thinks he has an allergic reaction to dust. The road to the site last week was very dusty and they were working digging out a new lake.

So an injection was decided.

I held him and in he went on Louis back. He growled that made me jump and the vet bent the needle. Whoops!! he had to  get a new one and we managed that better as he went in the scruff of his neck.

All done and £36.82 was spent.

We have come home and the dog is calmer and isn’t shaking his head. Bless him xx

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I really do like the photos of asbestos products that people show and today there were a few good ones.

Proof that Tiles had Asbestos in.

https://twitter.com/Remediclean/status/637044734934937600/photo/1

Did you guys ever heard about popcorn ceiling?

https://twitter.com/blake…/status/637098478091436032/photo/1

A friend made a comment –I sorry but the linked videos on how to remove popcorn ceilings do not show proper work methods. The first step is to take samples to find out if asbestos is present. The N-95 mask shown in the picture is not being worn properly and is not adequate protection from asbestos.

He is so right I hadn’t noticed.

Then there is this sad Pathe News reel where asbestos was being hailed the wonder material

​Asbestos is a pretty fantastically useful material. A naturally-occuring silicate material that forms in hollow rock formations deep underground, asbestos is a great sound insulator, is terrifically fire resistant, and is relatively affordable to produce. Also it will probably give you lung cancer and kill you.

You’ll see a lot about the good parts and nothing about the bad parts in this retroactively chilling 1942 video from British Pathé:

By the 1940s when this film was made, the dangerous qualities of asbestos were starting to be understood. The death of a factory worker from asbestos-related illness in the UK in 1924 sparked research which lead to the regulation of its use in the UK by the early 1930s. The United States didn’t follow suit until years later, and actively hid the danger from the public.

Asbestos is dangerous when its it is friable, meaning that its natural fibers can be broken apart into tiny strands and inhaled causing mesothelioma. Asbestos garments are not particularly friable, so wearing an asbestos suit like our friend in the video is not necessarily a death sentence.

Producing asbestos cloth on the other hand would definitely expose workers to friable asbestos. In general, folks who are involved in the production of asbestos-related material are most at risk of health problems. Roughly 100,000 people have died due to asbestos exposure in the U.S., mostly thanks to exposure during ship-making.

But as deadly as it is, the stuff sure works

http://www.popularmechanics.com/technology/a17118/look-back-asbestos/

We must have hundreds of films and photos in archives somewhere and I’m fascinated by them all. You can see how deadly asbestos is and the powers that be hid it from us. Still asbestos isn’t banned world-wide.

A Mesowarriors Diary -Living With Mesothelioma- A very Mad Birthday. Spoke on Radio Kent About Asbestos deaths in Kent Have Risen

The postman has been really busy here as he delivered so many cards for my birthday. What a day!!

Face Book announces your birthday as well so my wall was filling up with so many good wishes it was just so emotional but when flowers started coming to the door delivered by some eye candy men my day was really getting even better.

There was lovely charms among the cards and an Elvis Phone charm and a Key Ring and dragon-fly necklace.

My brother sent me a lovely watch as well.

We had to go to Canterbury so we set off and had a walk around all the old quaint streets.

We drove back to a carvery for lunch where you over eat

Got back home and more flowers came –what was going on I was getting so puzzled. Then all was revealed and Angela had been up to her tricks again and had arranged a lovely bouquet and cards to be sent bless her.

The phone went and I was asked if I would speak on Radio Kent as an article had been published today

http://www.kentonline.co.uk/kent/news/asbestos-deaths-on-the-rise-42260/

Number of deaths from mesothelioma caused by asbestos in Kent increases

27 August 2015

by Josie Hannett

The number of deaths from lung cancer caused by asbestos in Kent has increased, according to the latest figures.

Last year, 108 people in the county died of mesothelioma – which is caused by exposure to the substance – which is 17 more fatalities than the previous year.

The natural fibrous material was used as an insulator for hundreds of years until 1992, when it was made illegal to make products with in the UK.

Medway had the highest number of deaths in Kent last year with a total of 17, which increased by three compared to 2013.

The figure means Medway has the sixth highest death rate from mesothelioma in the UK.

Swale had the biggest increase last year compared to 2013, where the number of deaths shot up from three to 13.

In Thanet, 12 people were killed by the disease in 2014 but the year before, five people died.

 Dr Alan Mckenna is a law teacher at the University of Kent. He also campaigns against asbestos issues.

He said: “The precise mechanism by which asbestos triggers mesothelioma, we still don’t know. It’s a medical mystery.

“In certain towns such as Ashford and Canterbury the deaths have fallen. Why in Swale and Thanet are we seeing very large increases?

“Unless we look at the individual deaths, I don’t think we can answer why specifically those two parts of Kent have seen massive increases.

Dr Alan McKenna, campaigner for asbestos issues

“For example, it could be that people who worked in Medway in the dockyard where asbestos was used extensively, could have moved to Swale or Thanet and unfortunately passed away in these areas.”

After initial exposure to the material, it takes between 20 to 60 years before a person develops mesothelioma.

Each year more than 2,500 people are diagnosed with the deadly disease in the UK, with men five times more likely to be diagnosed than women.

Dr Mckenna added: “You can strip asbestos out of buildings completely but there is a massive cost issue, and the government aren’t going to fund it.

Exposure to asbestos can lead to mesothelioma

“The argument is that it is perfectly acceptable to block it in as best as you can to prevent the fibres escaping, effectively you cover it up.

“What would be very useful would be to have regular air monitoring in schools so that you get a very accurate picture of the precise level of asbestos fibres at that time when the children are moving around the school.”

Dr Mckenna believes more money should be spent on research to prevent the number of deaths and find a cure for mesothelioma.

There are two types of the prolonged disease, the most common being pleural mesothelioma which develops in the tissue covering the lungs, and peritoneal mesothelioma which develops in the lining of the abdomen.

Click on the link to see the chart.

I was asked what I thought of the report and I said that I was shocked as i thought the figures were levelling but it must be down to the fact that Renovating houses DIY and trade are involved now. We need more education.

Here is my Interview  http://www.bbc.co.uk/programmes/p02z9gm3#play from 02-07-35

What a day it has been mad from beginning to end but it has been a wonderful wonderful day xx

I wrote on face Book Im getting more and more puzzled here so many men knocking on my door with flowers –will there be a kiss a gram next and a delicious man stripping. You have all blown me away today. and made my 74 birthday really something its a day I didn’t even dare to hope I would enjoy 14 months ago. So thanks for making me smile all day you very crazy lot of wonderful people

I still stand by that they are all so wonderful and stick together and help each other daily, no one should feel lonely with mesothelioma or when they lose their warrior as everyone is there to hug each other.

I always say there is no other cancer where the people meet up and have great fun in hotels and out and about. Life is for living and we live every moment.

 

A Mesowarriors Diary -Living With Mesothelioma. Drug Day 32 Mk3475, Computers washed out and Fairy Penguins

I had a great sleep last night and actually woke up with the alarm ringing away. yes drug day was here again.

The journey was really great as the traffic moved all the way. just a couple of slow downs but we arrived 7.30 am so we sat with a coffee and woke up.

When we got to the Oak Ward I just knew something was wrong as the sister came out and was telling me about the fact all the computers had gone down in the 2 Marsden hospitals.Water had got into the electric boxes as it had rained so hard yesterday.

They were having to go back to pen and paper for everything.

My bloods were taken and I saw my Greek God of a doctor. He is so sweet and we went through how better I was getting. My Muscles have got stronger and I’m so pleased with a recovery of my legs. The skin is recovering and I havent worn support socks.

I told him I stopped Codeine but back on Paracetamol as I realise I have chest pain and he was happy with that.

In fact he was happy with me.

He couldn’t give me my scan results as the computers were still off.

Off we went for another coffee and then back again to sit and read and chat. 12  the sister woke me to tell me she had to redo a blood test as one had clotted.

That done we went waited in the waiting room but at 2.30pm Carol said the drug will be ready at 3.30pm Oh dear! back to the restaurant to get a roll and a yoghurt as we were getting hungry.

We found the new statue the Angel. i dont know the story behind it but maybe a family of a patient has donated this lovely statue.

The drug was ready at 3.20pm and I was sat down and plugged in and then it was all finished by 4.05 pm.

The Doctor had come in and I asked if you would ask the nurse to print off my results. I really don’t think they are used to a patient so interested in all the details like I am.

When it was printed off I was a little disappointed. After a 81% shrinkage I had a  Stable Appearance. All the marker tumours are the same size and yet Para-mediastinal pleural deposit after 27mm at the beginning of the trial was not Identified –that is now 3 that have done that. Shrunk, gone away.

So I go on with my trial  10mg/kg of pembrolizumab every 2 weeks.

I got home to a mountain of Birthday cards which really cheered me up and A sweet card from Lou in Australia introduced me to Fairy Penguins. I had never heard of them and searched in Google and found a lovely video.

A Mesowarriors Diary -Living With Mesothelioma. — Weekend at Sandwich Lakes. Lou Williams fight for her Drug to go on the Australian Free List. A new Write Up Of My Drug by Nancy Meredith

We have had such a great weekend at Sandwich Lakes Kent. A lovely country camp site near Ramsgate.

The Fishery is situated in a quiet, peaceful countryside setting with far reaching-views with a wide variety of lakes catering for everyone from beginners and novices to the dedicated Carp angler.

Excellent car parking with toilets on site. Stocks of bait and tackle along with rod hire are available at the fishermen’s lodge.

The waterside cafe serves hot food and drink daily which can be taken away to the lakes.

We were strolling around all the 5 lakes all weekend with Louis who did nothing but sniff and track all the wild life smells.

Swallows were flying over us all the time from early morning to late evening.

Swallows are small birds with dark, glossy-blue backs, red throats, pale underparts and long tail streamers. They are extremely agile in flight and spend most of their time on the wing. They are widespread breeding birds in the Northern Hemisphere, migrating south in winter.

The weather was very warm and we had the Heki open day and night but that meant we heard every noise whilst sleeping, well trying to sleep. The fox’s scream was very unnerving.

Saturday was so hot I just could function in the cool of the morning we walked around all the lakes and talked to the fishermen. They were landing their catch and weighing them and then back they went into the water. I have tried fishing but I was to cruel I never got the hook right. It never went into their mouths and caught on their side or in the lips. I sat there almost crying and promised them I would fish again.

. I sat out all day and moved into the shade, bought an Ice cream. It was lovely though and meant we sat out to very late chatting and laughing away.and ended up having our dinner at 8.45pm.

The Horses in the paddock walked around together all weekend especially the white brothers. They were so close and nudged each other and even swished their tails to hit the flies of each other ahhh.

Today the sun shone until about 1.30 and then the rain came over just for a while but we packed up and said goodbye and travelled home.

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Lou Williams in Australia has started a campaign to get Keytruda on the Free list in Australia. She is an unusual case as she has managed to get the drug privately as it is passed for melanoma and her Oncologist was able to give it to her. She has had wonderful results on Peritoneal Mesothelioma.

http://www.examiner.com.au/story/3294244/fight-to-see-drug-approved/

But the drug is expensive. $6000 per shot. Lou is hoping it goes on the free list but that will still only be for Melanoma.

I hope something is worked out for her and the other Australian Warriors.We are so much luckier UK to have the NHS we really should treasure it and make sure the NHS survives.

The drug hasn’t been trialled in Australia for Mesothelioma. Only Phase 1 that was the world wide trial that I’m still on.

Phase 2 is going to be a combo trial with another drug as it just doesn’t work for every patient.

It is thought it is a drug to use when nothing else has worked, when after so many chemos the Mesothelioma has mutated and the drug then works better.

The answers have not been found as this is such a new treatment.

We do know that we have to have PD-1 —

1. Programmed cell death protein 1, also known as PD–1 and CD279 (cluster of differentiation 279), is a protein that in humans is encoded by the PDCD1 gene. PD–1 is a cell surface receptor that belongs to the immunoglobulin superfamily and is expressed on T cells and pro-B cells.PD–1 binds two ligands, PD-L1 and PD-L2.                                
2. Also the drug criteria is 

   Criteria

   Inclusion criteria:

   • Have measureable disease
   • Have a performance status of 0 or 1 on the Eastern Cooperative Oncology Group (ECOG) Performance Scale
   • Demonstrate adequate organ function
   • Prior therapy criteria must be met

   Exclusion Criteria:

   • Is currently participating in and receiving study therapy or has participated in a study of an investigational agent or used an investigational device within 4 weeks of the first dose of study therapy
   • Has undergone prior allogeneic hematopoietic stem cell transplantation within the last 5 years, has received a live vaccine within 30 days of planned start of study therapy, has received prior chemotherapy, targeted small molecule therapy, or radiation therapy within 2 weeks prior to study Day 1, received a monoclonal antibody within 4 weeks prior to study Day 1 or has not recovered from adverse events due to a previously administered agent
   • Has known clinically active central nervous system (CNS) involvement
   • Has evidence of interstitial lung disease, active non-infectious pneumonitis, a known additional malignancy that is progressing or requires active treatment, an active infection requiring intravenous systemic therapy, an active autoimmune disease that has required systemic therapy, a known Human Immunodeficiency Virus (HIV), Hepatitis B (HBV), or Hepatitis C (HCV) infection
   • Is pregnant or breastfeeding, or expecting to conceive or father children within the projected duration of the trial
   • Has received prior therapy with an anti-programmed cell death 1 (anti-PD-1), anti-PD-L1, anti-programmed cell death ligand 2 (anti-PD-L2), anti-CD137, or anti-Cytotoxic T-lymphocyte-associated antigen-4 (CTLA-4) antibody (including ipilimumab or any other antibody or drug specifically targeting T-cell co-stimulation or checkpoint pathways)
   • Has known symptomatic congestive heart failure, unstable angina pectoris, or cardiac arrhythmia    
     

     ---

     We in the UK have strict rules about Trials to protect the patients  

   • http://www.nhs.uk/Conditions/Clinical-trials/Pages/Introduction.aspx                                                                                                                                                                                                      

Nancy Meredith Wrote this article which also explains more about immunotherapy and the fact they do not as yet understand who will benefit from the drug. They are continual looking at my DNA to see what it is that I have that is giving such great results of over 85% Shrinkage. (I will confirm that on Tuesday when im given my latest measurements.

she has written

Immunotherapy Drug Shown Effective in Fight Against Mesothelioma

Wolchok reported that patients in the Checkmate trial who expressed the PD-L1 biomarker had better results than those who did not. These results point to assessing patients for a PD-L1 expression for best results with a PD-1 inhibitor.

Another PD-1 inhibitor immunotherapy drug proven effective against melanoma has also shown to be successful against mesothelioma in a clinical trial in which Mavis Nye, of England, is a participant. The six-year mesothelioma survivor has been a patient in a Phase I,  no placebo clinical trial for the immunotherapy drug, MK-3475, marketed in the U.S. as Merck’s Keytruda (pembrolizumab). Mavis has been a participant in the trial for over a year and, she says, she has seen “brilliant results” with nearly complete tumor shrinkage.

Nivolumab has also shown success in lung cancer, leading to the FDA’s approval of the drug in March. Nivolumab, is the first and only PD-1 therapy to demonstrate overall survival in previously treated metastatic squamous non-small cell lung cancer.

The use of these immunotherapy drugs is another step towards using personalized medicine in the treatment of mesothelioma. By targeting specific proteins or biomarkers, such as PD-L1, instead of using a one-size-fits-all approach, the chance for survival and quality of life increases.

Pleural mesothelioma, a pulmonary cancer caused by past asbestos exposure, is one of the most difficult cancers to treat. The cancer is aggressive and quickly metastasizes to other organs leaving oncologists with limited treatment options. However, personalized care targeted to a patient’s unique mesothelioma characteristics optimizes the potential for success of the treatment and offers treatment options that may not otherwise have been considered.

“If we understand who to give it to, we can give the right drugs, to the right people at the right time with the right tumor and really dramatically increase the cure rate,” said Dr. Justin Stebbing, Professor of Cancer Medicine and Oncology, Imperial College of London, to Sky News. “And if we can’t cure people, we will increase the number of people living with cancer, as opposed to dying from it.”

“Immunotherapy is very exciting because the immune system is a natural and highly effective tool to fight disease,” said Dr. Axel Hoos, head of the immuno-oncology discovery performance unit at GlaxoSmithKline Pharmaceuticals, in a June 2014 interview with The Atlantic.

“No other drug or course of treatment has been able to generate the long-term benefits and promise for patients seen with cancer immunotherapies,” said Hoos.

njoynature/discoverandlearn/birdguide/name/s/swallow/index.aspx

A Mesowarriors Diary -Living With Mesothelioma. Working in the Garden, and a DIY warning of Asbestos

A glorious warm sunny day meant we were working in the garden yesterday and I wished I looked like this, but we were so worn out by the time we finished cutting and trimming. Its when you realise how old we are getting. The muscles in the thighs hurt so bad.

I love tidying up in August as it makes the Autumn cut back easier and then sometimes the plants get a second growth anyway.

We had fun getting the cuttings to the skip as I had loaded them into a dustbin and so had fun getting all the rubbish out.

We did get a dog walk in and the park car park was full of cars. I have never seen so many so there had to be a ramblers ramble going on.

The dog walkers were also there so it was a busy park yesterday even the Woodland Ranger came in to do a inspection and make sure everything was OK.

I had a lovely phone call from a friend who is so very worried about his Mesothelioma growing on again after such good results from a trial. He has the option of the Marsden and I pray they can do something for him. It is a very worrying time as I have been through that 4 times now of shrinkage and growing. It is nerve-racking and mentally tiring. A great worry for all the family.

I can only recommend what I would do and try to instil positiveness. I have never given that up. It has to be mind over body and there is an amazing power of the mind.

In early 2004 Time Magazine (USA) sent out an army of top journalists to talk to professors and doctors on what was known about the power of the brain and illness – the so-called mind-body connection. The result was a special edition of 46 pages entitled, ´How your MIND can heal your BODY´.

What was very evident from the magazine was just how much meaningful research and scientific study was inprogressin America, and indeed how much is already known that can benefit your health. So, here in Pillar 4 of our series (The other 3 were Poor Diet, Toxins and Infection), we decided to explore the, often-talked-about, Mind-Body connection further.

The truth is that scientists are beginning to understand how the brain communicates with the body right down to the cellular level. An understanding of the cellular steps has blossomed since Sir John Vane won his Nobel Prize in 1982. In fact four more Nobel Prizes have been won in the last ten years on how cells communicate with each other in the BODY.

whilst we know that the BRAIN has a direct effect on the nervous and endocrine (hormone) systems, it´s not fully clear exactly how it does it, although most UK medical practitioners would be amazed at just how much research is taking place in various locations around the world, and what has been discovered to date.

And there´s a third factor – the MIND. The level above all the practical factors. Many people reading this will feel that there are but two issues – The Body and The Mind. But we´ve broken the issue into three, to try to simplify understanding.

http://www.canceractive.com/cancer-active-page-link.aspx?n=1275

A discussion on Linkedin about surveys of the Asbestos in the home and the risks taken by DIY was interesting. We really must be more aware that it is hiding in older houses. The texture coatings we loved to use do contain asbestos and we all know about flaking ceilings. We do disturb as we paint these ceilings.

Pipes from the boiler covered in asbestos insulating we do need to be aware. It’s about time we had house surveys carried out. It isnt that expensive and it could save lives.

Asbestos Insulation Board ceiling linings – check the #survey report before you start!

Photos from Entec of Scotland

Inside

A. Asbestos cement Water tank

B. Pipe lagging

C. Loose fill insulation

D. Textured decorative coating eg artex

E. AIB ceiling tiles

F. AIB bath panel

G. Toilet seat and cistern

H. AIB behind fuse box

I. AIB airing cupboard and/or sprayed insulation coating boiler

J. AIB partition wall

K. AIB interior window panel

L. AIB around boiler

M. Vinyl floor tiles

N. AIB behind fire

Outside

O. Gutters andAsbestos cement downpipes

P. Soffits – AIB or asbestos cement

Q. AIB exterior window panel

R. Asbestos cement roof

S. Asbestos cement panels

T. Roofing felt

AIB = Asbestos Insulating Board

http://www.hse.gov.uk/asbestos/building.htm

We just cannot rest on our laurels we must keep fighting for a world without asbestos. So much money was made in the past  with this wonder material but now we rue the day we ever found such a material. It has saved a lot of lives I know as it was a great fire protector but we have known the dangers for far to long and done nothing about it, but now we must rectify that and make our world safe and keep Mesothelioma out of the lives of the future generation.

Rays Blog https://mesoandme.wordpress.com/2015/08/19/wednesday-137/

A Mesowarriors Diary -Living With Mesothelioma. A weekend Away. Storms Lightening Ball, Accidents Burglary what more can we endure

It seems a long weekend and a long time when I have sat here to write my blog.

http://www.canterburytimes.co.uk/Weather-warning-storms-hit-Canterbury-Whitstable/story-27601757-detail/story.html

We set off to our sons house Thursday in the most horrendous thunderstorm.

The rain was gushing down just as we wanted to take everything to the M/Home.We went down in the car to save getting soaked and just as we went to the M/H a huge crack and a fire ball appeared over the hedge.EKKK!!!

Shock we dive in the M/H and Ray was soaked, but we set off to the main road.

Everything was ok until the M20 and a poor man had crashed his car on the concrete wall our side and 2 cars were crashed on the opposite side ?? Puzzled we just couldnt make out what had happened.Although the newspaper reported the very young man died so very sad.

The rest of the journey was Ok until another accident The motorway between junctions 13 and 14 in Surrey was closed in both directions following the crash which happened at 5.35am.

We sat with the engine off for a long time and I was just going to make a cup of tea when we were moving again.

So then we had a great run until M3-M4 traffic which we are always used to as its also Heathrow’s turn off.

That was it we arrived on my sons drive and was so pleased to be safely there.

Friday we went to Tesco as it was raining and I wanted to see the Tesco in Slough. It is huge and so much nicer than ours.I didnt close the gates to the house and Louis was left in doors.

Well !! when we got back after about 1.30 hours we saw 2 police cars outside and just thought they had called in to the drive for a tea. They didn’t move out the way as we tried to get in. Oh dear they had caught a man who had escaped from the hospital while in police care.He had run down the road being chased and broke a window to the shed to grab a bike to get from Wexham as fast as he could.

Thank goodness he didnt get to the house as Louis was in there. he must have barked and saved the day.

Our Hero

Well from then on the weekend settled down and we went to the balloon festival at Northampton.

On Monday we went to Richmond by train which was good fun on a very crowded train to Ealing Broadway, then the underground to Turnham Green then another one to Richmond. None of this goes underground so we passed some very nice places of this area. There were so many steps to climb though. I was puffed out at every station at least the teso we had been in a couple of days back had a moving pathway i think everywhere should have them.

We met 2 friends for brunch at a riverside restaurant.

Very relaxed in brilliant sunshine it was a very pleasant time.

We said our goodbyes and walked through the High Street back to the station and return journey.

Homeward bond today and another weekend was had.

It is so cold tonight we have had the heating on. Where is all this rain coming from.

We missed the Hernebay Air show and the Vulcans last flight -never no more. I have to honour this wonderful plane that has been with me through all my life at every airs how I have been to and I have been to so many thanks to my Dad and Brothers love of planes.

So here is her last flight –sad very sad x

The majestic Vulcan bomber XH558 was one of the star performers as it flew above the Herne Bay crowds for the last time at yesterday’s air show.

The nuclear bomber, which is the only airworthy example of the 134 Vulcans made, is due to retire at the end of the 2015 flying season because it has flown for 10pc longer than any Vulcan.

The aircraft was built to carry nuclear bombs during the Cold War and was produced at Woodford Aerodrome between 1956 and 1965.

XH558 was one of few Vulcans to be converted to a maritime reconnaissance role in 1973, while it was also used as an air-to-air refuelling tanker.

Read more: http://www.canterburytimes.co.uk/pictures-Vulcan-bomber-s-flight-Kent/story-27617310-detail/story.html#ixzz3jCPfD0CP

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

A Diary Of a Mesowarrior -Living With Mesotheleoma A Wet Wednesday Asbestos Surveys for Householders ?

Not much sleep as I left all my pain killers off but it is a bit silly as I didn’t realise that I still had pain to kill. Oh yes I do. The whole of the left hand side top of mt arms down the back to the shoulder blades. A burning pain that is under my arm as well and then down the rib cage. Back on the paracetamol at least tonight. But my system is back to normal so at least the bowel stoppage is no more.

Its been a wet chilly day but we did get out with the dog. Not may people were at the park. The usual dog walker was there with his van and all the dogs he walks for people who are at work.

http://jenkinscanineservices.co.uk/

This is the walk we do with Louis and we meet the dog walkers. They are a friendly lot.

We came back and relaxed with a cuppa as we do notice that on the Wednesday after Marsden we are shattered. You not realise how stressful the day is.

But we will recover in the next 2 weeks.

My dear friend Yvonne has had her Dad work out the percentages from the scan I had in May -It makes great reading so I will ask him to do the New readings when i get them in 2 weeks.

Yvonne said — I asked my Dad to work out the percentages for you. Here goes: 43 mm to 17 mm equals a 60% reduction; likewise 32 mm to 5 = 84%; 22 mm to 0 = 100%; 27 mm to 0 = 100%; 76 to 30 = 60,5 %. Average: 81%. WOW thats some shrinkage and we now have more xx

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I know this could be seen as me advertising but I wanted to show that at last Asbestos Removal companies are really talking my talk.

I would love to see houses surveyed if only to identify where the asbestos is in a property. Not to set up panic but to be sensible and to know where it is and is it undamaged. Some people are ignorant about Asbestos and that needs to change.so Thinking of buying or selling a house?

If you have come across the word ASBESTOS in the building surveyor’s report for your property – don’t panic – asbestos is only hazardous if the fibres are disturbed. Based on the type of asbestos material present, we will determine which removal process has to be undertaken. The process depends on whether the materials to be dealt with are Notifiable or Non-Notifiable (see below).

Identification and sampling

A visual inspection by one of our qualified surveyors can advise on what asbestos materials may be present. However, a sample of the suspect material must be taken if we feel that the asbestos may be class as Notifiable. A sample analysis certificate will be issued showing the type of asbestos present, and which steps need to be taken.

How much will asbestos removal cost?

If the materials found are Notifiable, the removal costs tend to be higher depending on the amount of asbestos present.

A full site setup is required, including the erection of polythene/timber safety enclosures. On completion, independent analysts are brought in to check the air quality of the enclosure, sealed containers for waste have to be located on site.

The external costs relevant to the job can make the process more costly.

The removal of Non-Notifiable materials does not need the involved setup process and air monitoring at the end of the job. Such contracts tend to be quicker and less expensive.
http://asbestosservicesuk.com/homeowners_A.html

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Rays Blog https://mesoandme.wordpress.com/2015/08/12/wednesday-136/

A Mesowarriors Diary -Living With Mesothelioma- A long Day at the Marsden But I have Passive continuation on MK3475 trial

It was a very wet journey to The Marsden today. We did make good time even if the M25 was a stop go situation.

We arrived and I had my usual coffee as I like to think that is why Im getting good readings for my Kidney and pumping up my hydration.

On arriving everyone said Good morning and I then went to the waiting room.

Others came in and booked in and we all chatted as we were all called in together for the Dracula’s blood taking.8.30am

Lorraine the nurse got me an earlier scan so i was able to go straight away and had the scan at 10.30am

Oh I wish it was this smart a machine as I had to go on the old one. It rattles and shakes and the little man said “Breath in” and 15 seconds later ” Breath out ” When you have a bad Lung that is a long hold.

But once over we went back and saw the Doctor.

He was well pleased with all my bloods but we had a long chat about The side effect this drug causes after prolonged use. Constipation. It has almost come to a stand still and we went through my pain killers. The Codeine are the worse ones for the problem as the Doctor explained they are used to slow things up when you have had a colostomy.

So I have agreed that as I really use paracetamol and codeine as a way to get sleep at night. I will have a try but at least it will give my body a rest.

We went off then for a coffee and cake and buy the paper and a magazine.

Oh boy we waited for my drug. i fell asleep and and woke up feeling so sick. Oh no not a repeat of last time I thought. Ray was asleep and I got up and blacked out so I held onto a wall and got to the loo.

Well my bowels moved then. ha ha !!! Boy I felt better as i sat down with Ray again.

2.30pm the Doctor called me in and said he has my results of my scan.

He was so pleased that it showed – Passive continuation. Get measurements in 2 weeks but love the smiles everyone has.

I waited for longer and my drug was ready. Wow what do they do in the Pharmacy Dept. it does need sorting as another 4 patients were also having to wait so long.

But I don’t really complain as it is a busy hospital and everyone is working flat-out.

Oak Ward is the largest oncology phase 1 clinical trials unit in Europe. It is a busy and exciting unit where we deliver high quality nursing care to patients with advanced cancer who are receiving first-in-man clinical trials. Oak Ward is made up of an inpatient ward, a day unit and an outpatient clinic, and is part of The Royal Marsden’s Drug Development Unit (DDU).

The Oak Ward vision is to “Treat others as you would like to be treated yourselves”.

Inpatient ward

The inpatient ward has 10 beds in two single-sex bays of four beds each and two single rooms for patients who require isolation for medical reasons. The day shift runs from 8am to 8.30pm and the night shift from 8pm to 8.30am. Both include a detailed patient handover.

Read more about inpatient care and discharge.

Day unit

The day unit contains five treatment chairs and is where a number of different clinics are held:

• The screening clinic is to ensure you fulfil all the criteria for the clinical trial you are due to take part in.
• The follow-up clinic is a general review by nurses and doctors to make sure that it is safe for you to continue with your clinical trial.

Day care runs from 8am to 6pm. If your day care treatment goes beyond 6pm the nurses on the ward will look after you until your treatment finishes then discharge you to go home.

Well I was able to sneak out at 4pm but that meant we didn’t get home until after 6pm. It is a long day but it is for a special reason.

Rays Blog

https://mesoandme.wordpress.com/2015/08/11/tuesday-154/

A Mesowarriors Diary -Living With Mesothelioma. A weekend Camping At The Bush Blackbird and Thrush Pekham

What a hot hot hot weekend. The weather has been wonderful and we have enjoyed a wonderful weekend.

Very relaxed Friday afternoon we set off for The Bush Blackbird and Thrush Pekham

The traffic was good and we sailed the M2 M20 and then the 7 mile lane to the pub.

Its a lovely site with an Orchard and corn fields behind it. Lots of dog walking.

Perhaps boasting one of the most unusual names for a pub in Kent, the Bush, Blackbird and Thrush stands in a rural setting surrounded by fields.

Very much a traditional country pub, it is thought to date from the 15th century and has all the features to go with it! A roaring open fire warms the soul in winter and provides a divide between the main bar and restaurant throughout the year.

A menu of tried and trusted tasty home cooked food is offered to a high standard using fresh local produce and up to 30 people can be seated in the restaurant.

The house is listed in the latest Good Beer Guide, keeping a great selection of Shepherd Neame ales as well as quality wines. Two local teams play darts from here while cribbage, bat and trap and cards are available as well.

Walkers will enjoy easy access to both the Greensand Way and the Wealden Way from here too. For those coming by car, there is plenty of parking.

We settled down and was soon out in the sunshine sitting and chatting away the rest of the afternoon.

We walked in the orchards and picked up a few dropped cooking apples for dinner.

A lovely nights sleep that we found it so hard to wake up Saturday as it was so peaceful.

We had another walk  and picked a few more drops for dinner again. stewed apple and custard was very yummy.

We all met up to play a very Kentish pub game Bat and Trap.

Our team won which was a laugh.

With this over and a lovely laugh and a joke we gradually went in to cook our dinners.

The evening was so nice we all sat out to very late drinking and chatting and talking out our past. Just so nice as the sun set and the night closed in.

Today was so nice that we were all out early and had a coffee morning then I cooked a brunch and said goodbye to everyone as they travelled home.

There was only 3 of us left so we had to pack up and travel home ourselves another lovely camping weekend enjoyed.

Louis has had a great time as he has been sitting out with us and had lots of walks so he is home now shattered and asleep.

Washing all done.

Rays Blog https://mesoandme.wordpress.com/2015/08/09/sunday-127/

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