Living With Mesothelioma -My Diary- Foot Prints in the Sand

I put this on face Book Last Night

To my Meswarrior friends this is for you as I feel so deflated tonight. We fight and fight for that cure and its just beyond our grasp. We have shown the world what Asbestos can do to a person as we have lived the life with the fibers inside us so I hope my foot prints will be seen and wont be washed away with the tide and people will remember the fight we fought

Its not about feeling better its about how to regroup and what path to take, how to bring more awareness to the Mesothelioma that rages in our bodies. Im a person that cant wait and I cant wait for that cure. I know we Meswarriors dont know how long we have (nobody knows that answer) but what to do with my time that I have left. Gosh why were we given this fight. Today I will find some answers I want to leave those footprints in the sand xx

One Of my thinking times. Thoughts come and go and I know Im trying to hard to make myself understood.

If I could have my way I would march up to No 10 and say Lets have the Saatchi Bill lets fast track every drug and lets find the right one for Mesothelioma.

My second wish would be to go to get all the leaders around the world in one room and say ban asbestos from our lives.

My Third Wish is to stop the need for having to raise Charity as Im shocked just how much Charity money it takes to run everything from Hospitals, Equipment, Research, Education, Training the list is endless and I I thank each and everyone of these wonderful people that give their time and energy working for free and yet raising so much money.

That of coarse is a pipe dream as it has gone to far and really we cant solve it, as it is in to many places.

The world is doomed where asbestos is concerned. Reading this it brings home how the problem is so huge.

This is how we should be suited up all the time.

http://www.dartford.gov.uk/by-category/environment-and-planning2/pollution/what-to-do-if-you-have-asbestos

Building materials containing asbestos were widely used from 1930 to around 1980, particularly from the 1960s onwards. So houses and flats built or refurbished at this time may contain asbestos materials.

Asbestos has also been used in some heat-resistant household products, such as oven gloves and ironing boards.

The use of asbestos in these products decreased greatly around the mid-1980s, and since 1993 the use of asbestos in most products has been banned.

It is not always easy to tell whether a product contains asbestos as modern asbestos-free materials often look similar – remember it is usually older products that contain asbestos.

The types of asbestos materials that may be found in homes are described below:

  • Insulating board (Asbestos content 20-45 percent.)
    Insulating board has been used for fire protection, heat and sound insulation. It is particularly common in 1960s and 1970s system-built housing and is found in materials such as ducts, infill panels, ceiling tiles, wall lining, bath panels and partitions. It is unlikely to be found in buildings constructed after 1982.
  • Asbestos lagging (Asbestos content 55-100 percent.)
    Asbestos lagging has been used for thermal insulation of pipes and boilers. It was widely used in public buildings and system-built flats during the 1960s to early 1970s in areas such as boiler houses and heating plants.
    Asbestos lagging is very rarely found in homes, especially those constructed after the mid 1970s. The use of asbestos for thermal insulation was banned in 1986.
  • Sprayed coating (Asbestos content up to 85 percent.)
    Sprayed asbestos coatings were used for fire protection of structural steel and are commonly found in system-built flats built during the 1960s. The coatings were mainly applied around the core of the building such as service ducts, lift shafts, etc.
    Use stopped in 1974 and the spraying of asbestos has been prohibited since 1986. Sprayed asbestos has since been removed from many buildings, or sealed to prevent fibres being released.
  • Asbestos-cement products (Asbestos content mainly 10-15 percent, but sometimes up to 40 percent.)
    Asbestos-cement is the most widely used asbestos material. It is found in many types of building as profiled sheets for roofing and wall-cladding, in flat sheets and partition boards for linings to walls and ceilings, in bath panels, soffit boards, fire surrounds, flue pipes, cold water tanks and as roofing tiles and slates. It has been commonly used as roofing and cladding for garages and sheds and also in guttering and drainpipes.

    Use has declined since 1976, but asbestos cement is still being used, particularly in roofing and cladding products. Asbestos cement products are unlikely to release high levels of fibres because of the way they are made, unless they are subject to extreme abrasion. Damage from weathering may also release a small amount of fibres.

  • Other building materials and products
    Asbestos has been used in a variety of other building materials, for example in decorative coatings such as textured paints and plasters. These are still widely in place but supply and application has been prohibited since 1988.

    Plastic floor tiles, cushion flooring, roofing felts, tapes, ropes, felts and blankets can also contain asbestos.

  • Heating appliances and domestic equipment
    Asbestos was used in some warm air heating systems, electric storage heaters (up to 1976), in flameless catalytic gas heaters (up to 1988) and some early ‘coal effect’ gas fires.
    It has also been used in domestic equipment, such as oven gloves, ironing boards, seals on cooker doors and fire blankets, and in brake linings and pads.

So what do we do to help, what path do I take to help.

I will carry on and keep voicing how I feel and keep acting as Mother Hen with The Mesowarriors as a group. Each day a new diagnosis is made and everyday someone contacts me for help through this blog and Facebook.

I gather them into our groups and know everyone in the group will help them get through with all the help we can give.  We point the way to the latest treatment the latest Information.

Im leaving Foot Prints in the sand DO NOT wash them away

Rays Blog https://mesoandme.wordpress.com/2015/02/20/friday-117/

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Living With Mesothelioma -My diary- Still no news of the Saatchi Bill – A doctor has died of Mesothelioma and a Mesowarrior is asked for her comments

Yesterday was a very normal damp day. Summer ???
I had a busy time on my Computer in the morning some days are like that as help is needed by warriors and I have to research for answers to problems but we get there in the end.
I love researching as I find new knowledge for my self as well. We are always looking at new trials and drugs as the Saatchi Bill will soon be in but at the moment it has gone quiet so it must be very time consuming getting the Law right and rewriting the Bill.
I closed the Den and had lunch as we had decided to go shopping and fill the freezers up so that we dont have to worry next week. The Royal Marsden is getting closer again. They should have my results in 2 days time and be deciding if Im in the trial I want or at least what trial Im suitable for.
I did the washing and the fur seat covers for the Motorhome but I had left a plastic bag in there so when it was all finished spinning the bag held water and the cover was soaked. I thought I would clean out the filter and got the hand book and was following instructions. It said put a cloth down to catch the excess water. Ha ha !!! not good. A gallon of water shot out.
I had to mop it all up. The machine had to be pulled out and I kept telling Ray let me do it but no he had to do it. Crack went his back. Guess what it has cured his pain in his back and he could stand upright. Well that was a surprise. I moped all the water up and we pushed the machine back. I was able to spin the cover dry.
beccy
There is another report of a Doctor’s death in the papers and Beccy was invited to share her thoughts by the Oxford news.
Beccy is a Mesowarrior having lost her father to the disease last year. We first met in 9th May 2013 and her father passed away so quickly with Beccy fighting hard for his treatment.She said in May last year –  Yeah he is doing well, he’s got a bit of a cold at the minute so he’s feeling a bit rough, but other than that he’s been good, how is yours, are you well xxBy the September Beccy messaged me —doc came round & told me she’s been watching dad closely & thinks he’s deteriorating rapidly, she said she thinks that it won’t be long after we get home Monday, even tho I know things aren’t good, me & my sister just can’t seem to accept it  feel so emotionally & physically drained xxxIt shows you how fast the disease goes at the end.Now she is talking in interviews that is so brave of her. I admire her courage and her Awareness of asbestos and Mesothelioma

A DOCTOR from Wallingford died after years of exposure to asbestos when he was a medical student, a court heard.

Oxford Mail: Andrew LawsonAndrew Lawson

Andrew Lawson, 55, who died from the cancer mesothelioma in February, contracted the disease as a consequence of training at Guy’s Hospital, London, from 1976 to 1982.

Oxfordshire assistant coroner Peter Clark ruled yesterday that the father-of-three died of the industrial disease.

Dr Lawson’s wife, Juliet Lawson, 53, who is also a doctor, said in a statement: “Andrew could not think of any significant source of asbestos … except for the underground tunnels at Guy’s.”

She said that after her husband, who lived at Thame Road, Wallingford, was diagnosed with the inoperable disease in 2007, he was contacted by a professor who had also worked at the hospital and had contracted mesothelioma.

A statement made by Dr Lawson before his death was read out as evidence at Oxfordshire Coroner’s Court.

He said he was exposed to asbestos-coated steam pipes in underground tunnels that connected the medical school and the hospital.

He added: “There were always people doing repairs.

“Typically, I would make three or four return trips each day.”

Dr Lawson reached an out-of-court settlement with the hospital and medical school in 2009, which included a confidentiality clause.

His solicitor, Andrew Morgan, told the Oxford Mail: “Dr Lawson is one of a number of tragic cases for mesothelioma we have brought on behalf of former medical and dental students. But we know there are other cases across the country.”

Calls have been made for more research into the issue.

Rebecca Lewington, 31, whose father Larrie Lewington died from mesothelioma last October, after being exposed to asbestos while working for Witney-based Kidlington Insulation in the 1970s, said: “It’s a horrible disease from which there’s no coming back.”

Miss Lewington, who lives in Eynsham, added: “There’s got to be more research being put into this, especially considering this is a man-made disease. These people didn’t need to die.”

A spokeswoman for Guy’s and St Thomas’ Hospital said: “We didn’t accept liability at the time the claim was made. We are very sorry to hear that Dr Lawson has died, and extend our condolences to his family.

“The asbestos in the basement area concerned was removed in the 1990s.”

After being diagnosed, Mr Lawson was forced to retire at the age of 48 from his job as a consultant in anaesthesia and pain management at the Royal Berkshire Hospital in Reading.

Rays Blog http://mesoandme.wordpress.com/2014/05/28/wednesday-89/

Rays Puzzle http://onestopmesothelioma.co.uk/your-daily-puzzle.html

Living With Mesothelioma-My Diary- Rays thought on my trial, My answer to a Doctor on Saatchi Bill Facebook,

cartoon for my blog

 

 

 

 

Woke up to wall to wall sunshine yesterday and today and the weather forecaster had said rain.

Ray was able to work on the Motorhome roof and I stayed in doors working but after lunch I have dozed off. Woke up to my DIL shouting out hello. A lovely surprise.

We chatted all afternoon and I cooked dinner.

They had to go home earlier as they were calling in on my sons friends wife. She was recently widowed after loosing her lovely young man to mouth cancer. Terry has lost two wonderful friends recently and both had cancer. the other one is suspected to be Mesothelioma.

It has shocked him that two lovely friends have departed the world as they just come to 50 years old.

We keep being told we are living longer but I fail to see that as the friends die so young with disease of road crashes.

candle 2

 

RIP xx

Today is so nice we must get out for a walk and then I must knuckle under and write my next speech. I will be able to talk about Phase 1 trials now and the relief of getting on one.

Ray wrote his thought down and the whole family agree to me doing this, so im very happy to go ahead now

He wrote

So How do I feel. The waiting  weeks for the appointment was torment, filled with dread but also  hope.

The Journey was a worry  for me but it was not half as bad.

The fact that KCC have said there is no more they can offer Mavis is a smack in the face wake up call.

No more treatment what does that mean. WHAT does it ACTUALLY mean. When  you get home, Nothing more we can give you gradually sinks in. Is this the thin edge . Is it down hill from here. OMG! The fear that runs through my head the pain physical pain I feel in my chest is almost to much to bear.

But I should not have worried. Mavis is to strong to let a little statement like that  Phase her. She came home and does her research, talks to her contacts gets advice and does what she does best. Gets things sorted. She made inroads into treatment and trials up and down the country. She settled on the Royal Marsden. She spoke to  her Oncologist and said I want a referal to the Marsden. And that is what she got. The apointment  yesterday friday was a breath of fresh air. All the staff  we met were upfront helpfull and understanding.

The process was explained to us  so that we can understand it all the way.

After paperwork and a short wait they came back  to talk to us again. This time they said they were happy to offer her a place in a trial. We left feeling a lot lighter than when we arrived. As for me It was a lifeline thrown  to us. They went to great lengths to point out that  they cant offer a cure and that   the trial may not even work. But we reached out and grabbed their offer with both hands. It was a great feeling that there was once more Hope. We cant have a cure but  we have hope of  at least more time. because time is all we ask for. The daily torture of  looking at mavis fighting fighting  for every extra day we have had since that  original  prognosis of  you have 3 months ,12 weeks 84 odd days after half a century of love and togetherness takes its toll.

But  today some weight has been lifted off my shoulders. Some chink of light at the end of the tunnel. Some more  time to do  things together. Any other scenario holds nothing but unbearable pain for me. I cannot conceive a time when thats no longer possable.

All power to her for  giving me the strength to bear this almost unbearable burden. In her shoes  I dont think I  would cope.

Dont stop. Mavis I love you  and I want to go on loving you for a long time to come.XXX http://mesoandme.wordpress.com/2014/05/03/saturday-86/

Well if your very good

Well if your very good

 

God i love that man and all the support he gives me even though he has been through heart surgery this year and has a bad back.

mesowarrior

I salute all the carers as they are so brave

A doctor on Facebook is saying the Bill isn’t necessary My reply is  — Sorry Adam but on the Patients side –it is. There is no treatment only Palliative care for Mesothelioma, (as I have that I fight for the Bill but I realise its for all Cancer) I was told after 4th line Chemo there is nothing else, I have found an Innovation Hospital ( 1 in Kent are there any more) Im now a Guinea Pig and going on a phase one trial, it isnt for Mesothelioma but I will try anything) There are so many Phase one trial coming out I want all terminal cancer patients to be able to have my chance. It may not work but at least my family will be able to say at my funeral She tried her best and fought all the way. Patients that are ill should not have to be fighting and chasing for treatment. I have traveled and researched on the internet. This Bill will cut out all this heartache I have put myself through. Doctors be will back in charge of my illness and treatment as they should be.

A very important Conference was held Friday http://www.ncri.org.uk/events/the-ncri-mesothelioma-workshop

 The NCRI Mesothelioma Workshop

Fri 2 May 2014

09:30–17:00

The Royal Society of Medicine, 1 Wimpole St, London, W1G 0AE

More about this event

The aims of this one day workshop are to:

1. encourage basic and translational research in the field of mesothelioma, by raising awareness of available funding and resources

2. communicate the current status of mesothelioma research

3. address the important clinical questions and how they can be implemented

4. generate ideas for proposals on basic and translational research in mesothelioma.

I received a report from one of the Doctors that attended —-We had an excellent and extremely productive meeting at the ncri international mesothelioma workshop today supported by the department of health. Importantly, the Wellcome Sanger institute (the nasa or cern of cancer genetics was represented). I sense a movement in the industry developing to bring more effective therapies which is encouraging. We need more trials for the relapsed setting though. 

Things are looking up for our Mesowarriors of the future.

Living with Mesothelioma –My Diary –So many Red Berries does this mean a freezing white winter ???

Fancy colorful animated table clock gifFancy animated carved wooden wall clockCoo coo clock with bird

 

The clocks went back so it is always strange when you get up and realise its an hour earlier than you thought it was doh!!

It was lighter outside and a very sunny day so that was great but then you realise it will be darker earlier –not so good.

I looked out and my path was all dried out and did look very clean, after the wash down yesterday.

Before

After

We had an email from very dear friends to make arrangements to met up in 2 weeks before they go to the Bahamas for the winter so I was very excited about that but they sent photos they took Of our time at Malvern together.

Two happy cowgirls xx

I adored the Indians they gave a reenactment and told tales with the sign language as well -so very gentle

Louis all ready and waiting for his walk

Ray had to go to the Dentist Technician –yes on a Sunday weird but true. So I got on and had a good tidy up and cleaned the windows inside as the window cleaner is coming tomorrow.

When Ray came home we had a walk with Louis and suddenly we were amazed at all the berries on people’s bushes.

So many berries does this mean a very cold snowy winter ??

Walking past our church we could see it has a boarded up door and wonder if there had been a break in last night.

Shocking if that was the reason.

We had a brunch and worked then on the computer all afternoon but did manged to watch country file and a  film.

I cooked a roast for dinner and we have just finished that.

Relaxing evening watching the results of Strictly and X factor just waiting for Downtown Abbey of coarse.

Rays Blog http://mesoandme.wordpress.com/2012/10/28/sunday-25/

 

 

 

 

 

 

Living with Mesothelioma -My Diary- The end of a lovely weekend x

Well Im home and settled in after having such a great weekend it has been wonderful.

After going to bed late again last night we woke up to the sun shinning through the heiki I knew it was going to be a good day.

I made our coffee and took Louis for walk but he just wouldnt go for a wee. All he did was sniff the grass, gosh I hate him when he does this, such a frustrating dog at times.

Then we went off for a walk into Queensborough,  A land Rover came by and the occupants were waving madly at us and shouting at hello!!! and then I realised it was the Site Owner Stephen. he stopped and asked us where were going, so we told him for a walk. He gave us instructions to walk to Queenbury harbour and left us with, if you get to tired phone and I will pick you up. How sweet was that. He has been the perfect host all weekend.

We have been enthralled with the views this weekend, with the way the colours have changed as the clouds have come over and the sun keeps appearing and disappearing. There are geese on the water and birds in the sky. Ships siren have blown and their engines sounding as they pass by.

We walked until I got tired and then came back to the site where I cooked Sunday breakfast, by this time everybody was awake and out so we sat around by the Motorhome’s chatting the rest of the day.

It came to where we just had to say goodbye –you have to say it sometime.

Thanks everyone for a relaxing happy weekend.

Rays Blog http://mesoandme.wordpress.com/2012/10/14/sunday-23/

Info for my Brothers as they read this blog — Tess my friend and patner in meso crime has written

I was given some interesting figures this week by my oncologist. They have been analysing data relating to mesothelioma patients diagnosed with the disease between 2010 and 2012 in my health authority.
In this time 170 new patients have been diagnosed with pleural meso ( a rare disease????)
Between 40%-60% got to first line chemo and it only worked for approx 25% of these patients.
Of those getting through first line treatment only 17 patients got to receive 2nd line chemo. They have no figures beyond this. Patients may not get to first line chemo because: they are diagnosed too late for treatment; are too unwell to receive treatment; choose not to have chemotherapy treatment; or sadly die before ever getting to the referral stage.

http://tessgully.blogspot.co.uk/

This is making me feel very nervous as I must be in an even lesser figure that have had  3rd line and when it grows again I will be in an even lesser figure to that to have 4th line –my odds are getting smaller xxx

Im just amazed that out of 107 —17 had second line. I would have thought the figure would be higher. I would love to know all the reasons why the others didnt have Chemo. Also as the Medway towns would be in this figure and only 107 have been diagnosed in 2 years when meday was such a hot spot. The Dockyard closed so some would have moved out of the area I suppose!!

Thanks Tess for telling us though.

Living with Mesothelioma -My Diary- A Happy Day today –

MR Happy

A day that starts so quiet and yet gets more happier as it goes on is very good medicine.

First on face book a photo of  a rescue that have become friends in the centre.

Ready Ahhhhh

Photo: They think they're brother and sister. I think I'm in love.

I wish I could have this cute pair xxx

All us warriors put our comments on a published article where they say Asbestos isnt dangerous –why do these people say such things without checking their facts.

“The general public is very ignorant about asbestos, in that they don’t understand that they do breathe it from the ambient air outside every day,” Swain said.

We simply don’t breathe in concentrated levels of asbestos for prolonged periods, which is when the substance becomes dangerous.

“Typically those individuals that become sick as a result of it are those that have dealt with it day in and day out of their occupational exposure,” he added.

I only washed clothes I didnt work with it day in day out  –IDIOT!!!! Mr Swain.

http://www.krmg.com/news/news/local/asbestos/nSYRs/

My Comments is there with Debbies and Mary who is a Nurse practitioner in the US

My comment –Mr Swain you need educating in the dangers of Asbestos. All I did was wash my husbands clothes and cuddled him as he came home from work. I didnt work with asbestos I was 20 years old and at 69 I couldn’t breath and I was diagnosed with Mesothelioma.
It only takes one fibre to cause this dreaded disease.
Asbestos is a death sentence -incurable cancer has grown around the lining of my lung . I have endured 3 rounds of Chemo and it wont be my last as I fight to live.
Please go away and write the true facts of Asbestos as it is so sad to see someone so ignorant about Asbestos and that money and greed is still causing people to us Asbestos.

Gosh we are forever fighting a battle somewhere.

Ray wanted to get some wood -he has told the story of the window sill in his blog -and of coarse I was right it was damp. We had bought a damp meter and yes it bleep around the lump that appeared in the window sill. What I cant get over was the fact what we thought was a wooden sill it was made of compress cardboard. We at least thought it was going to be wood chip or MDF. Gosh dont they cheat nowadays. The days of real wood are gone in the building trade. Ray made my kitchen in real wood and any job he does he uses wood.

But at least it isn’t a serious problem as i thought it was rain getting in. We have had so much rain it never have surprised me. Now I have a lovely wooden window sill and he has promised me he will do all of them.

Lots of walking with Louis today I have had a good day. Then my friend Sonja said she had got booked into a good site for the weekend and I phoned and got in as well. We have been wanting to stay there all summer but it was always full.

Leo Bay

Lovely views over the river Swale. I will be able to write about it when we have been –excited.

I really love the fact my Grandson is now standing on his own two feet. Place to live, a good job, and is really happy.

Out with friends .

Dan on the left with all his Film making friends –the photo is by Natalie Taylor

You do worry for them don’t you but they all find a place in the world.

The rain is pouring down now –really pouring

Rays Blog http://mesoandme.wordpress.com/2012/10/11/thursday-17/

Living with Mesothelioma -My Diary- Nearly missed my flu jab

I didnt get dressed today for ages as I was shattered yesterday and had eyes on stalks by the time I went to bed.

So much googling and reading the screen all day wears the eyes out.

I chatted to friends and read my Facebook and then I read how people were having their Flu Jabs–I said to Ray we must be being missed we haven’t had an appointment yet.

Ray phoned and found out they have been doing it since SEPT !!!

The Receptionist said they will not be sending out appointments to save money, the last session 27th Oct I have just made it.

I wasn’t happy as that clashed with our going camping so Ray contacted another surgery and they found us an appointment on the 20th Oct —at the same surgery as the other appointment –crazy.

They said they had told us on an advert on the prescriptions — I don’t have prescriptions my chemist deals with the ordering of my pain killers.

I would have thought they kept a list of patients that really musnt get the flu as it would kill them.

I can raise this at my next meeting as a Patient Representative.

So Ray went to his exercise regime with the  Physio.

He came back with rather worrying news that his back is locking up (please read his blog)

It would seem that if the Physio manipulated his back the spine could snap –We were going to a Bone crusher –Ekkk!!! that could have gone so badly wrong.

So he now has to have his team meet and see where he goes from here.

Myeloma mesothelioma how alike the names are, Ray has started a great site where he is collecting info as we warriors do we have to now reach the people that would need such a site so he can be in contact with fellow sufferers.

http://ramos72.wix.com/a-myloma-journey#!home/mainPage

I made a lovely home made soup it tasted so good but was made by me cooking things left in the fridge, carrots, parsnip, tomatoes, mushrooms, and curry powder and any spices I had and an OXO.

I Liquidized everything and we eat some as I have now a lot left for tomorrow and the next day so I had better freeze it or we ill get fed up with it.

It was such a good day with the sun out so I suggested going to Faversham to give Louis a lovely play in the park.

There was a Fun fair set up but nothing going on as it is there for the Carnival on Saturday. Thats late in the year for a carnival.

Not a lot there so maybe they havent set it up yet?

We stopped at the farm shop on the way home and I bought all my fresh veg and lovely plums and raspberries.

The farmers wife is really nice and friendly and she helps me choose nice vegetables –my super foods.

Got back home and it was soon dinner time. I have been drinking a fab fruit juice made with cherries and apples, with my dinner and I had a great fresh salad with the beetroot, lettuce and vine tomatoes i had bought today.

A great day again.

http://mesoandme.wordpress.com/2012/10/10/wednesday-15/  Rays blog