Living With Mesothelioma -My Diary- Blood Day.

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Blood day today so we had to get ready early and set off at 10am.

We arrived at the Park and Ride a  poor lady was all upset because she didnt know how you got a ticket. Ray went through the barrier with our car and then went back to help her. She got her ticket and she got through to park as well.

The Motorhome section was filled up. I dont know why on a Wednesday this happens. Is it cheaper on a Wednesday on the Ferries or Tunnel. They were a lot of foreign M/Homes .

We caught the Hospital Bus and was soon into the hospital. I didnt wait to lone before I was called in and my bloods taken.

So we got back to the car and went shopping in ASDA. The prices seem a lot cheaper I was surprised so I have stocked up. All the healthy things I could find. Not one sweet or chocolate went into the trolley. Honest.

Soon home and packed away and lunch was done as well. You keep looking at the phone and willing it not to ring. Hoping your bloods are OK.

Jeremy Steel had sent me a Email saying how pleased he was that my Chemo was working I had emailed to thank him for finding it for me as it has given me a new start again. Maybe another year before I need Line 5 .

Then I realised as I was cooking dinner that the phone hadnt rung. You can then relax –Your Bloods Must be good. So Chemo Friday Hooray.!!!

So not a lot happened today just a quiet day. I like those days

Great news from Australia on a new drug http://au.news.yahoo.com/video/national/watch/18258309/world-first-mesothelioma-drug-trial/

Karen Banton, the CEO of the Bernie Banton Banton Foundation says she is excited about a new drug treatment that could save lives.
This new clinical trial is exciting, and all at the Bernie Banton Centre are to be congratulated.
Prof van Zandwijk says he does not want to raise false hope, but he is cautiously optimistic the treatment will work.
I agree wholeheartedly, but this trial does give hope, and that cannot be a bad thing!
Rod Smith

Karen is excited I think the whole world of Mesothelioma is excited I wish it every success we will be watching xx

Rays Blog  http://mesoandme.wordpress.com/2013/07/31/wednesday-53/

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Living With Mesothelioma -My Diary- A cold wet day -where has the sun gone ???

Photo: The future Kitchen with your own vegetable garden which grows food without using harmful fertilizers and pesticides. In the future you will grow what you eat and eat what your grow.

The future Kitchen with your own vegetable garden which grows food without using harmful fertilizers and pesticides. In the future you will grow what you eat and eat what your grow. I think we should make room for this in every kitchen now fresh vegetables and herbs would be so nice and healthy.

Well I have slept most of the afternoon as well as having a good nights sleep. I really wish I could get some strength back but at least Im allowing the Chemo to work so it cant be a bad thing.

It was so cold today -wet and windy after all the sunshine of late you cant believe it can get so cold in summer.

Anyway the garden has been watered and the plants have grown so healthy this year as if its trying to put on its best show for me.

Im not enjoying washing my rubbish up really that’s crazy but Im doing as I have been told.

I kept asking if Rays Heart problem was anything to do with Asbestos damage and they kept saying no and then I have read this report today.

Press ReleaseCardiovascular Disease mortality among British Asbestos Workers (1971-2005)

Accepted 6 February 2012

  • Published Online First 2 April 2012

Abstract

Objectives Asbestos is an inflammatory agent, and there is evidence that inflammatory processes are involved in the development of cardiovascular disease. Whether asbestos is a risk factor for cardiovascular disease has not been established. The objective of this study was to investigate cardiovascular disease mortality in a large cohort of workers occupationally exposed to asbestos.

Methods Cardiovascular disease mortality in a cohort of 98 912 asbestos workers, with median follow-up of 19 years, was analysed. Unadjusted and smoking-adjusted standardised mortality ratios (SMRs) were calculated. The association between indicators of asbestos exposure and mortality was analysed with Poisson regression models, for deaths occurring during the period 1971–2005.

Results Altogether 15 557 deaths from all causes, 1053 deaths from cerebrovascular disease and 4185 deaths from ischaemic heart disease (IHD) occurred during follow-up. There was statistically significant excess mortality from cerebrovascular disease (SMR: men 1.63, women 2.04) and IHD (SMR: men 1.39, women 1.89). Job and birth cohort were associated with the risk of cerebrovascular and IHD mortality in the Poisson regression model including sex, age, smoking status, job, cohort and duration of exposure. For IHD only, duration of exposure was also statistically significant in this model.

Conclusions Cerebrovascular and IHD mortality was significantly higher among these asbestos workers than in the general population and within the cohort mortality was associated with indicators of asbestos exposure. These findings provide some evidence that occupational exposure to asbestos was associated with cardiovascular disease mortality in this group of workers.

http://oem.bmj.com/content/early/2012/03/05/oemed-2011-100313

I wish they would listen and they could have done another scan for Ray. Its because they dont scan the whole body when looking for problems that they miss the whole story.

I have had many Xrays and Scans and operation to build a new urethra due to my kidney yet they missed the nasty in me growing away that could have been found so much earlier.

Im beginning to think we should all have a body scan as a checkup if you wish to know as everything is easier to treat if found early.

Anyway on a happier note I have bloods tomorrow and then Chemo Friday the fight is still on.

Rays Blog http://mesoandme.wordpress.com/2013/07/30/tuesday-61/

Living With Mesothelioma-My Diary-A very windy one but we missed the storms.

It was so sunny from morning to night today but the wind has been blowing.

My very thinning hair isnt liking the wind, but it does make it look thicker as it is blown all over the place.

The has been Lightning strikes across the United Kingdom but we never had any in East Kent so we were so lucky.
http://bit.ly/14tbWbX

I put the washing out on the line and it dried within half an hour. We used to call that blanket drying weather when we had blankets. Now its all Duvets but we cant get them into washing machines.

Had lunch and then a nice run out as Ray wanted a watering can for filling the M/Home up when on sites and the water tap is awkward to get to so it isnt always easy to use the hose pipe to refill.

I just walked Louis around at the garden centre but Ray couldnt find a flatish one as they are more shaped and on the round style. We need to get it in a back box.

So back to B&Q and he found what he wanted there. I walked Louis onto the rugby field so he could play with his ball but he acted weird as there were school boys sitting around. He gets sort of shy at times like that. So he had a bit of a run but was happy when I turned around to go and meet Ray as he came out of the shop.

As I got into the car the door blew shut on my swollen ankle Ouch!!!!! It doesnt hurt as it is numb anyway but the swelling wasnt wanted.

Got home and sat down both of us are tired from the weekend so its nice to just relax.

Cooked Salmon for dinner and Louis had some as well. I never knew he liked salmon.

We have had the new Recycling bins delivered today. so many Im in a muddle so I will have to practice this week and hope I get it right. It seems as if I will have to do a special rubbish wash up as everything will need to be clean, no putting anything out in sacks so It will even mean washing bins up as well. I wonder if we could get a reduction in rates as we are doing all the work now.

Blue lidded recycling bin or box

For recycling glass, tins, cans and plastic

Red handled recycling insert or box

For recycling paper and card

Black household waste bin

For other items which cannot be recycled

Food waste caddy and bin

For recycling raw and cooked leftover food

Green lidded garden waste bin

The garden waste service remains unchanged

So many colour codes  https://www.canterbury.gov.uk/bins-recycling/changes-to-your-waste-collection-service/

As if my life is complicated enough, But I will soon get the hang of it or my rubbish will pile up where they wont take it away because I have made mistakes !!!

The wind has calmed down now and the sun is shinning I have really loved this summer even if we couldnt always get away it has been the sort of summer you dream of.

Prince Charles and Camilla visited Whitstable Oyster Festival then he went onto Chatham.

The Prince of Wales was given a tour of Chatham Historic Dockyard’s newest attractions on his visit to Kent today.

Prince Charles and The Duchess of Cornwall spent time at the Dockyard

I hope all the Asbestos has gone from there now. That was where my story started as Ray worked there.

While Prince Charles was being given a short tour and met with volunteers and staff, The Duchess of Cornwall visited the Railway Workshop to meet young children taking part in a school holiday workshop.

Lilly Mayor, seven, from Rainham, was selected to present the Duchess with flowers on her arrival at the pirate playtimes session.

She said: “I was really excited and really happy. I have never met a Royal before and I really wanted to give her the roses.”

The royal couple then both visited the No.1 Smithery gallery which opened in 2010.

There was just enough time for Camilla to view the photographic exhibition Exploring Antarctica: The Final Expeditions of Scott and Shackleton.

At the end of the visit, they both unveiled a plaque to commemorate the day and Prince Charles was presented with a children’s swing for the newborn Prince George. It was made at the Dockyard using timbers from the Victorian sloop HMS Gannet and rope from the ropery.

http://www.kentonline.co.uk/medway_messenger/news/royal-visit-to-dockyard-3977/

I had a rope from the ropery up my stairs at our house in Lordswood, it was great as hand rail.

Rays Blog http://mesoandme.wordpress.com/2013/07/29/monday-50/

Living With Mesothelioma -My Diary- a weekend away at Barton Point.

Well we are back from a wonderful weekend in the sun.

It was wonderful as we arrived at Barton Point on the Isle of Sheppy, even we did take a wrong turning in a one way street. I said we didnt need the sat/nav silly of me as road layouts change  over the years.

We went round the one way system and came back and filtered left and were on our way again.

Arriving at Barton point and saw we were sharing the site with a Circus.

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We traveled on to our site and met all our friends that were already there.

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I made dinner and we ate that and washed up then went out and sat in a circle and nattered away until it started to get dark and so back to our Motor Home for a great nights sleep. We all sleep better in our vans, must be the fresh air.

Saturday we woke up to another glorious sunny day and it got warmer and warmer so we set off for a walk.

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We came round by the back of the Circus and out onto the road where we sat by they lake and then I saw this dead Plaice,

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Larry came along and told us the site hadnt open the sluice gates in the very hot weather we had. They didnt realise the sluice was to circulate fresh water.

Actually the water is bracken water, a mixture of sea and river water. They thought the sluice was for flooding so they have lost a lot of fish for the fisher men who come there to fish.

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So there I sat looking at the poor fish.

We did cross over the road and had a look at the beach but even that has changed as they have made a steep beach for flood protection so we couldnt get down to the beach at this point.

Came back to the motorhome and had lunch and a snooze but we did sit out and be sociable and found out what everyone did for the day. Some went to the Dockyard and read all the history of Sheppy (it was named after all the sheep on the Island in the past)

At this point I will put in their website the history is wonderful as they played a very big part in the wartime. http://www.sheppeywebsite.co.uk/

http://www.sheppeywebsite.co.uk/index.php?id=61

Here is a map of where we were and what it was in the wartime they only finished last year to clear the bombs etc etc .

Then last night we had a terrific storm as did most of the UK. When  your out in fields and by water seems more scary, but it was so pretty watching the lightening as it passed us and went out to sea.

This morning we woke up to hundreds of Scouts enjoying the lake with their sailing boats. The wind blew a lot out of the boat and they were crashing into each other.

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They left in a coach that bought more back as there is a huge gathering of Scouts  at Detling.

A huge welcome to the 270+ contingents at our International Jamboree

6,000 Guides, Scouts and their Leaders from every corner of the world are gathered at the Kent Show Ground for a week of friendship activities and adventure!

It is a fantastic event where Guides and Scouts are living and learning together.

For all the Guides and Scouts on site, they are having an amazing first-hand experience of multiculturalism in action. They also are interacting and participating with others from different cultures with different faith and social systems to build solidarity and understanding across cultural and geographical boundaries.

They are making new friends and sharing the fun of participating in activities and challenges with them as well as just enjoying and be in the company of like minded people.

This is the Kent International Jamboree!

30 Countries are participating!

We look forward to the raising of the flags of nations at our opening ceremony.

UntitledHow great is that but I wouldn’t like to look after so many young people as it is a huge responsibility but I admire the people that do. So after watching all the going ons we decided to come home this afternoon. It takes a while to get home and inpack and then cook a dinner.

The M/H is ready for next time love the life. Im sure it is what keeps me going as I seem to be able to forget all about my aches and pains and just have fun with my friends.

I have checked the Mesowarriors and there are a few in trouble but they have got through the weekend which is so good to hear that they are all safe.

         Rays Blog and how he sees the weekend   http://mesoandme.wordpress.com/2013/07/28/sunday-56/

Living With Mesothelioma -My Diary- This is my week off from Chemo and Im so happy.

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Had a great nights sleep and woke up at 7pm feeling very good. Coffee and breakfast and then I remebered the District Nurse was coming. OOps had to get washed and dressed. She knocked just after 8.30am I had her in the kitchen with my box of dressings ready and then as she was washing and dressing the Picc Line I realised I could see the bedroom door open. I prayed Ray would remember to put his trousers on at least before he walked down the passage.

Phew lucky but he did and said good morning to her.

She had been to me before but right back at the beginning of all this madness. She was amazed at how I looked and loved it that I looked so well.

So that was over for 3 weeks as I will have it done at the Hospital when i get the chemo next week.

I washed the shower out today and took the plug out and found so much hair I realised although I haven’t lost hair to the point of going bald but it is thinning again and going very fine and soft.

I have kept it longer this time so it doesnt notice.

After Lunch we went shopping on our own to The Range, I love that shop so much in there.

We then went over to Marks and Sparks to buy some food healthy of coarse.

Ray bought a load of cherries and strawberries –super foods –lovely.

It was a really pleasant ride out but of coarse when I got home I was tired and kept cat napping.

Phoned my friends and her daughter spoke to me so I answered all her questions about having Mesothelioma and she feels so much better talking about it to someone who has been through all the shock times as you first get diagnosed.

She has an appointment tomorrow so she will hear her pathway and she will phone me Bless her I feel so sorry for her and so young.

Rays Blog  http://mesoandme.wordpress.com/2013/07/25/thursday-54/

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Living With Mesothelioma- My Diary- 4th Line Chemo 3 -A busy day in the garden

It has been so hot since early morning and I had a lot of gardening to do.

I had bought some new plants so I had to plant them in my wooden tub. I had planted marigolds but they are for winter planting and the bad winter has meant they just have not grown, they have a few flowers but I wasnt happy so I bought a Lavender and 2  Geraniums.

We didnt stop we kept cutting back and shaping up and weeding so now Im happy again.

This  has been taken at 9pm so much cooler now

This has been taken at 9pm so much cooler now

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That tall white plant has just flowered for the first time since I planted it 5 years ago -amazing

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So its all tidy again in the front I have to tackle the back , I have to get the garden ready as the new neighbour is having a High fence put in so the look of the garden will really change.

I made lunch and was shattered and chemo sweating that was pouring like water.

had a great relaxing afternoon and feel cooler now.

The Royal Baby was named tonight.

HRH PRINCE GEORGE ALEXANDER LOUIS OF CAMBRIDGE –Louis is thrilled he has been named after him. We are calling Louis Prince now.

A friend has phone and i cant believe the news that her daughter was diagnosed today that she has Mesothelioma –she is 40 years old. how cruel is that. I put together my web site and other bits but I bet they will all be to shocked to read and take it all in. Im here for her and will help them through these early days. I wish her all the luck in the world as she has 3 lovely young daughters. Boy do I hate theis disease. This has shocked me more than my own diagnosis.

Rays Blog http://mesoandme.wordpress.com/2013/07/24/wednesday-52/

Living With Mesothelioma -My Diary- 4th Line Chemo 3 — A very stormy night

baby

What a happy happy couple with their first born I have really enjoyed watching this on telly as the baby goes home.

We have had terrible storms over night and lots of rain. The lightening was fantastic over the Salt Marshes as we can see such a wide area from the bedroom and so we watched the dazzling display.

Lightning strikes across Kent

Torrential rain paired with thunder and lightning made the county skies light up throughout the early hours.

Multiple lightning strikes caused fires across the county last night with firefighters being called to several locations.

A home in Gillingham was one of the worst hit as fire crews were called at 4.25am Audley Avenue, Darland, after the house was struck by lightning.

Teams wearing breathing apparatus, used a hosereel to tackle the blaze in the ground floor living room of the two storey house. The family inside the house were alerted to the blaze by their smoke alarm and were forced to evacuated the hpuse and call the emergency services.

Thankfully there were no reports of any injuries.

Fire crews were also called to a house fire in Lympne, near Ashford.

http://www.kentnews.co.uk/news/multiple_lightning_strikes_cause_fires_across_kent_1_2292970

When we got up and although raining on and off it was still very warm.

So we have been in  the house most of the day. I have done a sort of spring clean and tidied the home with a very melted forehead.

Ray took Louis out
hairy  boys

I watched the hungry sailors this afternoon I love the way they collect up all local food and then invite people back to their boat to eat.

What a lovely way to live.

I have felt very good today so Im very happy with my Chemo although I do know it is hitting my Marrow Bone.

Infact I have asked how I will know I have had tto much and have become Toxic the answer from The USA Nurse is –you will see by the counts, we do expect delays and possible transfusions by cycle 4. Platelets are usually the deciding factor as we do not have a good way to replete them and a platelet transfusion only holds them for 72 hours. if you do well and it holds you for 6 months or so, it can always be revisited. Great to hear you continued good news on the battle lines

So that will be my guide line If I do get into  needing a blood transfusion after Round 4 -which starts next Friday I will rest -I promise.

Rays Blog http://mesoandme.wordpress.com/2013/07/23/tuesday-60/