living with Mesothelioma ..Postcard from Folkestone Race Coarse

We had a walk to the station ..well just round the corner of field really. Spoke to a guard of a train that had just pulled in and he told us they run every half an hour. So we will have a ride tomorrow to the sea.
Ray spent time before lunch putting up the wind blocker. W e are pleased with it and so is Louis who went out and sat there watching wasps fly by.


We have sat there as well and it keeps the wind off us so a good buy we think.
It is so nice so we walked around the racecourse and wonder if we will be able to do that on Sunday or will we have to pay. We will see.


it all looks exciting and the coarse is quiet big for flat racing.
When we loaded the photos from the camera and found this one


This is what I’m always talking about how Whitstable is always so packed directly the sun shines and we can’t move in our own town.
The Qu,s all the way back to the A299 the road from the M2
We are now just relaxing after a cup of tea and a Ice bun and Dinner will be late today as we have had a nice ham salad already.
camping meal of sausage and beans later.

– Posted using BlogPress from my iPad

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Living with Mesothelioma Postcard from Folkestone Race Coarse

We have come to a rally at Folkestone even though we traveled through rain to get here. I thought the field would be bad to get into but find it is an old campsite so the drainage is very good. The sat/nav took us past the race coarse so I thought it knew the way into the field, NO, it took us into the station car park, we had to turn round and go back, then it kept saying turn around when possible. oh how I hate those words.
We found our C&CC friends and settled down. We are right by the train line and I thought that might be a bad idea but you get used to the sound of the passing trains.
We will travel into Folkestone tomorrow as today Ray wants to put up the Wind-blockers to try them out.
The racing isn’t on until Sunday so we will walk about today and find the surrounding walks. There is a sign by us that says Castle so we will find where that is.
We heard from our friend Tony and his Op was all good so now wish him a speedy recovery xx
So I will write again later, having breakfast outside in the warm sun in a field overlooking a race coarse, that’s what I love about Motorhoming, you get up to another view each time..

– Posted using BlogPress from my iPad

Living with Mesothelioma –My Diary– Waiting for the news of our friends Heart Op

 

 

To Tony please get well soon.

A quieter day today after all the excitement of yesterday. Our friend Tony has gone in for a heart operation and we are on tenterhooks waiting for news of how he is going on.

I met him at Malvern and he look so tired and ill, not our usual Tony always laughing and smiling even though he is so much pain most of the time.  He had a road traffic accident in the 90’s hence he has to wear a leg brace that is not comfortable for him.

It is the 5th time they have gone into his heart to put another stent and each time another vein weakens so we are all waiting to hear he is OK.

I had many comments on yesterday’s Daily Mail Article so that’s good. People have understood my fight for Awareness.

Peter from Barts answered my email where I sent a copy of the daily Mail to him to show Im still doing Ok. he replied that he had  read the piece….and it was very informative! (pleased he thought that.

He also said  the ADAM trial is 80% of the way through so just looking for the last 15 patients to enrol. So if anyone needs to know more please  contact St Bart’s –I wish I could but I havent got the Argine in my Bi-Op –you might have and I really did believe in this trial.

I have been asked by another Journalist  to do an article about how I live my life with Mesothelioma and he wishes to come and watch my day, as I cope. I don’t know what day that should be -I will have to have a real think and plan it.

 

I have shared this from my Facebook never know we might find it handy one day as they don’t believe in mouth to mouth anymore. That’s how I was trained in a training coarse I did for healthy and safety at work. Things change all the time don’t they.

Also came across a good article which I so agree with

Anyone who has been diagnosed with mesothelioma knows his or her life will never be the same.  After recovering from the initial shock of having developed an incurable cancer, mesothelioma patients are immediately faced with medical appointments, surgery, chemotherapy and other treatments needed to battle the cancer.  Dealing with the stress of the diagnosis can push patients into an emotional tailspin.  Recovering from that downward spiral may require them to find a new normal in order to move forward with their lives.

Read more: http://www.mesotheliomahelp.net/blog/2012/08/mesothelioma-patients-often-have-to-find-their-new-normal-in-order-to-move-forward#ixzz24xjC5wbt

I do agree  this is so true –my worry and anger boiled over sometimes and I dont have patients for things that upset me and I feel are spoiling my life as my life is to short. I must find a path to travel down and to feel comfortable in. I think Im doing well most times but sometimes I spiral out of control. I then compose myself and climb back on the path.

I have been watch the reports on the Hurricane Isaac most of the day as The storm surge combined with a high tide will cause normally dry areas near the Mississippi and southeastern Louisiana coast to be flooded by peaks of 6 to 12 feet, the center said. Alabama could see up to 8 feet; the Florida panhandle, 6 feet. A 10-foot surge was reported at Shell Beach, La. I hope they stay safe i Alabama goodluck.

We had a lovely day but friends were reporting rain in the West and gradual it traveled to us with a huge downpour this afternoon. Lucky we had taken the dog out for his walk.

I made a shepherds pie for dinner real snuggle food and we curled up indoors.

Rays Blog  http://mesoandme.wordpress.com/2012/08/29/wednesday-12/

 

 

 

Living with Mesothelioma -My Diary–Have I told you— Im in the Daily Mail today xx

Well what a day.

First My friend Tony sent me the link to The daily mail on Line and posted this on my Facebook http://www.dailymail.co.uk/health/article-2194460/How-minutes-DIY-cost-life-years-later-Hidden-asbestos-homes-putting-millions-risk-deadly-lung-disease.html

I thought I was going to have to wait until I could get to the paper shop.

I cascaded the link to so many people that I knew was waiting for it and couldn’t believe the response as people all over the world cascaded the link.

The computer is a very powerful tool.

My little bit was

Someone else who knows all too well of its impact is Mavis Nye, from Whitstable, Kent.

In the early Sixties, her husband Ray was a shipwright in Chatham dockyards, and she would wash his clothes when he came home.

‘They were always covered in asbestos dust — we used to joke he looked like a snowman when he came through the door,’ says Mavis, 71.

‘We had no idea how lethal it was.’

Fed up of working in a dusty environment, Ray left the dockyard in 1963.

Years later, with knowledge of how lethal asbestos was, the couple feared for Ray’s health. But, in fact, it was Mavis who became unwell.

‘We were on holiday in Spain in 2009 when I felt very tired and breathless walking up a hill that I’d normally have no problems with,’ she says.

Back home, her GP arranged an immediate chest X-ray, and Mavis was called back to the hospital for scans.

‘And then, boom — I was told I had mesothelioma and given three months to live.

‘I came home, arranged my funeral, threw out most of my clothes and bought new things for the house so Ray wouldn’t have to deal with it all.’

Mavis has survived three years, which she attributes to large doses of chemotherapy.

Her tumours have shrunk, and she can have further chemotherapy if they begin to grow again.

‘It’s sometimes hard to breathe — there’s a tightness across my chest — but I’m still active,’ she says.

Ray, 74, adds: ‘Not a day goes by when I don’t wish it was the other way round.’

Must admit we talked longer on the phone and had a photographer all on Sunday morning,  but I wont complain as I love the whole Article as it raises so much awareness and Christine and I champagne for DIY and Schools trying to raise the dangers of Asbestos.

But Christine of  IATP  — a Facebook friend did very well as she has so much experience as her and husband Mark Winters run a training program and are always there when I need info.
http://www.cnmtraining.co.uk/index.asp?PageID=22

Christine mark and myself  they recently came to stay where we put the world of Asbestos to rights. xx

Infact Christine sent me this on Facebook as the wizard of Oz was on Telly yesterday

Photo: wizard of oz on TV today ... did you see the bit where the snow woke them up?

All That lovely snow —Asbestos

they even proudly put it on the box???

The other person I have made friends with is  Linda Reinstein of ADAO  in the US, who has asked us to quote 6 words for the Brazil Supreme Court hearing. I did this and Linda turned it into a Poster on Facebook for me to see.

We do have fun together but we also work hard together as united we stand against Asbestos.

So that was my business day– my home life is shattered after all the gardening I have done but I did carry on and tidied the shed. I had to vacumm the shed as I keep the cloths dryer out there  and its been blowing all the fluff everywhere, on shelves and floor.

Ray had to go to the Diabetic clinic and I went with him. I walked Louis around the harbour as we waited for Ray. It was so lovely and warm and the day visitors hadn’t arrived yet

The Greta sailing barge in Whitstable harbour basin (photo: Ivor Dennis)

We walked around together me and my dog.

When we got back to the car park Ray was just arriving and it was all good news as his sugar and blood temperature were all fine.

Came home for lunch and thats when i tidied the shed.

Dinner was made then of Minced Steak in a garlic and roasted vegetable sauce.

I had also made Rays treat -apple crumble.

Now here Iam sitting at my computer telling the world of my day —isnt life funny.

Rays Blog http://mesoandme.wordpress.com/2012/08/28/tuesday-15/

http://www.kentcoast.org.uk/whitreculver.html

Living with Mesothelioma My diary –A lovely Birthday

 

I have had a lovely Birthday even though we have stayed home and I have been gardening all weekend.

We are celebrating at the Races from Thursday as C&CC have a rally at Folkestone race coarse, so really looking forward to that.

I have had over 100 cards and cyber wishes on forums and facebook.

My family have phoned so all is happy.

Love Mrs Brown so thanks girls for this one xx

I cooked a really large Gammon steak each and had very naughty chips for dinner tonight.

So the garden has been all cut down and the pond has had a good clear out and now its raining.

After such a sunny weekend why does it have to rain again.

They have said next weekend will be good again so I hope they are right.

The phone went today and a recorded voice told me that I have an appointment to a scan on Sept 3rd press 1 if I will attend and press 2 if I wont.

Gosh we have come a long way in the NHS so maybe they could give us results in the same way. That would really take a lot of worrying from us wouldn’t it.

Well that’s the last bank holiday of the year.

Rays Blog I didnt know he was bored oops!!! we could have gone out http://mesoandme.wordpress.com/2012/08/27/monday-12/

 

 

 

 

Living with Mesothelioma -My diary– Another busy day in the garden and Targets are met

Well I have done that today by using up my energy in the garden again. We have really cut back more bushes and ray has put them through the shredder. This really is a good way of recycling our own plants as they finish giving their best in the garden.

We were both shattered doing this job as Ray had to watch his back and me my arms and hands but we have completed 3/4 now so with a bit of luck all I have to do tomorrow is tidy up the front pathing and that will be a good job done for the winter.

I can just titivate in the next few months before the snow.

We had lunch after a rest and took Louis out then came back and I zonked out for 2 hours.

Cooked dinner of beef curry and rice and an Eton mess.

 Eton Mess

http://www.deliaonline.com/recipes/main-ingredient/meringue/eton-mess.html  with Dehlia’s help it was lovely.

Cant believe its my birthday tomorrow so another target has been reached –this is so good I keep stretching survival year by year -Im so happy to be here still with my friends and family.

My friend Jan has survived 8 years today so we are breaking the rules of Mesothelioma with todays treatments

She wrote a wonderful poem

Eight Wonderful Years Gone – hope Eight more to Go

My friend  has stayed with me since I was a child
I didn’t know it then as it slept quietly inside.
Once awake it never sleeps
No matter what I do
Taunting me with false hope
it still stays consuming my lifeIt isn’t only just my friend
it has attached itself to so many others
ruining once charmed and happy homes,
destroying relationships, bringing tears
striking fear into our very souls.

It has created some thing it didn’t expect
a unity of many, an army of warriors.
It’s once fickle friendship is not mine alone
many it has befriended, I now know

It didn’t introduce us how a friend would do
It didn’t want to be named
concealed deep within
Once known, its name can never be forgotten
Nor will those it cast it’s eye upon and claimed

Our mutual friendships have developed
We all share the need of Hope
Some comrades have fallen
Our Friend claiming them for its own.

Beware my unwanted friend
United we stand until you fall
That day will bring such Joy
Your days of friendship will come to an end
Until then Meso, take the hint
and go to H***.

http://jansmeso.blogspot.co.uk/2012/08/eight-wonderful-years-gone-hope-eight.html

Congratulations Jan xx

Photo: Isn't he just lovely.  How not to smile

http://news.sky.com/story/977022/mo-farah-twins-joy-for-olympic-golden-boy

Congratulations Mo

Mo Farah hugs his wife after winning the men's 10,000m final at the Olympics

Congratulations Mo and Tania on the birth of the twins –thats 2 gold medals today

Rays Blog –a man of few words ha ha http://mesoandme.wordpress.com/2012/08/26/sunday-16/

Living With Mesothelioma- My Diary- RIP Neil Armstrong

We woke up to a very rainy day today. A typical bank holiday what a shame.

It didn’t seem worth rushing around we are so fed up with rain.

Tidied up and Ray took Louis on a walk as they splashed through the puddles together I soon got around the house.

I worked on the computer talking in my forums and was surprised that I wasn’t the only one who had decided not to go away.

We took Louis out for a longer walk when the rain stopped which was nice and refreshing.

After lunch I worked in the garden cutting back again this time I was clearing as many bushes that I could with the thought of autumn in mind and the fact I can go back on chemo anytime so there is no way I will be able to work in the garden then.

I did the front side garden until my arms were hurting so I knew I should stop.

Ray will shred the branches tomorrow if it is sunny, for me.

I then baked a black forest gateau for sweet  Black Forest gateau recipe

I cooked dinner when I had stopped fiddling with the sweet.

Steak, green beans mushrooms and potatoes I seem to be back in a baking mood again and not skimping with meals.

Tonight I was saddened to read Neil Armstrong had died

http://www.nasa.gov/centers/glenn/about/bios/neilabio.html

We all remember when he said those famous words.

‎”One small step for man….One giant leap for mankind”

http://www.youtube.com/watch?v=HCt1BwWE2gA&feature=share watch again as he stepped onto the Moons surface.

Rays Blog  http://mesoandme.wordpress.com/2012/08/25/saturday-again/