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.

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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..

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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

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

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.

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

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

Congratulations Mo

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  

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/

 

Living With Mesothelioma –My Diary– A bank holiday spent at home so this will be a change.

Its been a funny day today. Settling back in to the house after living in the Motorhome is just odd.

I put all the ironing away in the wardrobe and tidied as I went.

We then decided to go shopping as the freezer was low of meat and while we were there at Tesco’s we put the car in for a wash and Vac.

We had a lunch and Ray couldn’t get over how cheap its was. i had a jacket potatoe and cheese and he had a brunch.

Then we did the shopping.

Back home it took me ages packing it all away.

We had a quiet afternoon as Ray worked on the computer catching up.

So I decided to bake some cakes –stem ginger and current buns.

Then I cooked dinner of lamb chops with garlic, mushrooms, rosemary all cooked in cider.

Then we had Pancakes with cherries and chocolate sauce –very naughty but lovely.

It has been raining again so Im rather pleased we are having a Bank holiday at home this year.

Maybe I will be able to get out into the garden.

Rays blog http://mesoandme.wordpress.com/2012/08/24/friday-17/

 

 

Living with Mesothelioma–My Diary—A trip to Malvern and Wales

Gosh it seems ages since I wrote here but its only 10 days.

We got to Malvern and the weather was very cloudy but it was wet some days and dry another so it didnt stop us having a lot of fun.

We met up with our RV friends Ken and Wendy and so we sat in the camping field on afternoon and the next day sat and had a great barbie that evening and passed the night away with a whole group of friends, laughing at stories Ray told.

In  the MHfacts site we sat with Dennis and Brenda and was fascinated by the bird the young friend had.

We went around the Motorhome show and looked at many Motorhomes for sale and Ray has found one he really likes so we might investigate but I love my Clubman so we are undecided.

We loved all the Western show, even if it made Ray jump when they let the cannon off with a huge bang.

When the show finished they let us have a look inside the tents and talk to us about the life they led in those time.

On the last evening they preformed the trilogy which was very emotional and we cant believe that we haven’t had one photo come out. grrrr

We said goodbye to all our friends and traveled the most horrible B road down to Caldicote to Bill and Betty’s bungalow (Bill is the wonderful man that is always sending me flowers when I get down or have good are bad news–bless him.

We had a lovely time with them as they are so sociable and we camped on their drive.

Off we went to Cardiff with them the next day This is Cardiff castle where their son Scot had married 1 week ago.

and went to Tiger Bay on the Waterbus.

The link to more photos—–

https://picasaweb.google.com/rays70mail/MalvernAndWales

We had to say our goodbyes yesterday and traveled to Wexham where we waited for our son and DIL to get home from work. The Motothome was so muddy we used their water with our hose to clean, hope being on a meter hasn’t run up  a great bill ha ha !!

Our DIL made a wonderful curry for diner and we sat up to the early hours chatting away.

They both went to work today and we left to come home and all the washing has been completed and pegged in the sun shine. So ironing tomorrow.

It has been a wonderful journey and we have been in the company of some great friends –happy memories have been logged.

My Interview with the Daily mail will be published next week so looking forward to that as I raise more awareness to Asbestos

Rays Blog http://mesoandme.wordpress.com/2012/08/23/home-again-6/

living with Mesothelioma A postcard from Malvern

We have arrived at the Malvern Three Counties show ground for a Motorhome show

last night we camped on my sons drive at his new house in Slough, which was a change from a camping site.
we had a great evening with them and was able to see all the damage Our grandson has done to his face in the accident he had last week. We was so sorry for him as his face is in a bit of a state to say the least. He had had an operation and all the places were covered in a skin, but we could see the bruising that is coming out now.
We went to bed in the van quiet late after watching the space station travel over head. It was so silent as it fascinated us.
We had hoped to see the little fawn that visits their garden with its mother and father
But that wasn’t to be, maybe Louis being their put them off.
We said goodbye and then had a great journey up to Malvern to the Western Motorhome Show.
We had a very heavy shower as we were up very high just before we got Tito the M5 and couldn’t see ahead very well. maybe we were so hit h we were in the very cloud that gave us the rain.
Still it’s been dry since arriving, well just some spots.
Meet up with friends so we are now in the van and will settle down for the night to wake and go around the show,…….maybe spend some money.

This Red Tail Buzzard has been bought here by a young man parked next to us in a Caravan, bosh I do hope Louis doesn’t see it

Doesn’t it look fierce but it is only 12weeks old so how big will it get when it’s fully grown
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