Living With Mesothelioma –My Diary- Oh no! Snow flurries for the weekend. A water leak so no water this afternoon.

It was a very cold morning that greeted us today. I took Louis into the garden and the water in the bucket from the downpipe was frozen. brrr

The forecast is for very cold this weekend brrr Snow flurries are due.

More house work done, gosh when you think I have been married since 1960. How many plates have I washed, cleaned the house, and cooked dinners in that time. Dont add it up please The figure would be to much. ha ha !!

I had to play with word and works today on my computer to sort out a good programe to open documents sent to me.

I haven’t got much patients as I like everything to work first time, if it plays around I tear my hair out. It went right in the end.

It was my Cancer Network Information that came through and I have a form to fill up to say I still wish to carry out my duties as a Patient Rep under the new Regime so I will agree and send the form back. I have to keep Mesothelioma on the Agenda and fight in our corner.

I have been reading about  Asbestos in Schools and parents right to know Currently, parents do not have the Right to Know if asbestos is present in their child’s school. In the age of freedom of information, and given the dangers related with asbestos.

A central database is required so we can assess the extent of the asbestos issue in our schools, manage the asbestos and plan for the future. This is essential for our children, all those who work or visit our schools. When will they learn??? I think never as I have also read how Young people still don’t understand.

 The Health and Safety Executive (HSE) believes that many young workers do not understand the huge dangers posed by asbestos.

Although the construction material has been banned for more than a decade in the UK, many buildings that were erected before 2000 are likely to contain the substance.It has been commonly used in the trade since the 1950s, when there was very little information on the massive health problems it can cause.

Around 4,000 people die every year in Great Britain because of asbestos-related diseases and the HSE thinks that 1.8 million tradespeople are still at risk of exposure to the material.

The HSE has launched an event in Clydebank aimed at raising awareness of the regulator’s e-learning package that teaches youngsters about asbestos and the severe conditions it can lead to.

It has been jointly organised by Clydebank College, the Federation of Master Builders and the Scottish Centre for Healthy Working Lives and is predominantly targeted at apprentices who may not have been in the construction industry for long.

“This event continues HSE’s drive to tackle ignorance about Britain’s biggest industrial killer,” commented HSE principal inspector Archie Mitchell.

“Many young tradespeople believe that, because asbestos is no longer used in buildings, it’s no longer a threat to them. But that simply isn’t true.”

The HSE continues to take a hard line against companies that are found guilty of breaching Control of Asbestos Regulations 2012.

Earlier this month, it fined a Birmingham builder £4,000 after the individual was discovered to have removed asbestos from a property in Castle Bromwich illegally.

All work that may involve asbestos needs to be thoroughly planned and, in some cases, only licensed organisations are permitted to handle the substance.

In this particular incident, the man was taking out asbestos insulation boards, which should not be touched by unaccredited workers.

The fibres and dust that derive from these boards can cause a number of life-threatening lung diseases if they are inhaled.ADNFCR-2134-ID-801543610-ADNFCR

We have a long way to go in raising awareness.
Made a Lamb dish from a Sainsbury Recipe for dinner tonight
 Oven-baked Lamb Chops with Onion and Rosemary Sauce
Debbie is a lot better today and hope she is home soon. she hasnt rested though as she has been on face book and messaging me but its good to see her so cheery.
As Ray has said our water went off and there was a fountain of water in the park as a valve blew.
I had just enough water in the kettle to make a coffee to keep us warm as the heating went off –no water.
It was soon sorted thank goodness.

Living With mesothelioma -My Diary- Turkey Tikka for dinner on a cold day.

A very quiet day again today as it was so cold outside after the milder weather we have had.

Ray took Louis out early as I cleaned around and made the beds.

Worked on the computer and then went out to get some sauces I had forgotten, and some warm tights.

We walked Louis around to let him have a run.

Came back to the warm house and watched a little telly before making the dinner. A Turkey Tikka  with stir fried vegetables.

It was very delicious.

Debbie is doing very well and will soon be out and back home, I hope she rests as she is always running around and doesn’t give her body time to  recover.

We will be nagging her that’s for sure. Other than that it has been a quiet day in the meso warriors world.

I had to write a biography for ADAO  and attach a photo but my word program had crashed so we had to load a new one on and lucky enough it picked up everything I had written in the old broken program.

Gosh sitting here I have realised it is Rays birthday in 2 days time .I will have to get my thinking cap on and buy a present.

kiss

 

 

 

 

 

 

 

 

 

 

 

 

 

Here is advice to make you laugh and yet it explains why it is unsafe for me to fly when we have a bad Lung with air trapped in it.

http://www.nbcnews.com/travel/travelkit/let-your-flatulence-fly-scientists-urge-passengers-1C8431651

Flying increases flatulence according to an article published friday in the peer reviewed New Zealand Medicl Journal

and passengers should release the gas- or risk painful medical consequences.

Lead author Dr. Jacob Rosenberg, professor of surgery at the University of Copenhagen, said he always wondered why he had more flatulence flying than when on the ground. Then, after a recent trip, he opened his bag and noticed a water bottle “almost smashed by the change in ambient pressure,” said Rosenberg. “And then I thought of the mechanisms of increased bowel air volume when flying.”

It’s simple. When altitude increases, pressure decreases. According to the thermodynamic principal known as the “ideal gas law,” as pressure drops, volume increases. While cabins are pressurized to compensate, the mechanisms can only do so much. When the plane is at a cruising altitude of 33,000 feet, inside it’s still the equivalent of 8,000 feet above sea level. That’s a lot of physics bearing down on your intestines.

There’s a clear medical rationale for releasing the gas. Holding back flatulence can lead to “discomfort and even pain, bloating, dyspepsia and pyrosis,” according to the article, titled “Flatulence on Airplanes: Just Let it Go,” which surveyed previously published research and studies. It also notes that holding back flatulence has been suggested as a major risk factor for diverticular disease, a condition where pouches develop in the wall of the colon.

But just try telling that to your seatmate.

Instead, Peter Post, a director at Emily Post institute and author of “Essential Manners for Men,” recommends that travelers “hold it in until they have the opportunity to get up and release the gas in the restroom.”

If you can’t get to the lavatory in time, for instance, if there’s turbulence and the fasten seat belt light is on, “be as discreet as possible” and release the gas, said Post. “People understand the situation and let it go.”

Unfortunately, no graceful phrase or gesture exists to completely smooth over the social awkwardness of releasing your personal flatulence inside a confined space where 50 percent of the air is recirculated. An “excuse me” can really only go so far. It can even draw its own unwanted attention.

“Almost anything you say can create embarrassment and make the situation more difficult,” said Post. “Your best bet is to keep your mouth shut.”

The article’s authors suggested airlines install seats embedded with active charcoal, which can absorb intestinal gases. Carriers could also pass out blankets with the odor-absorbing compound sewn in.

Travelers could also be subjected to a methane breath screening and those with higher methane content could be assigned seats in a restricted area of the plane near the lavatory. Another proposed solution involved the use of rubber pants with air containers to collect passed gas.

As for passengers, they could wear underwear lined with active charcoal, the article said.

Rosenberg said that though the paper had “a humorous direction,” it’s based on published research. “The background is serious,” he said.

But fliers prone to gas should take preventative measures.

Rays Blog  http://mesoandme.wordpress.com/2013/02/20/wednesday-32/

Living With Mesothelioma -My Diary- Debbie went back into hospital again. and a report on my Meeting at Cancer Network

I have come down to earth with a bump today as Debbie has been back into hospital but thank goodness it isnt her Mesothelioma that is the problem but her TOF

Tracheo-Oesophageal Fistula (TOF)

In Tracheo-Oesophageal Fistula (TOF), the bottom end of the baby’s oesophagus is joined to its trachea (windpipe). Without surgical intervention, this causes air to pass from the windpipe to the foodpipe and stomach. It can also allow stomach acid to pass into the lungs.

Child with TOF/OA Child without TOF/OA

Debbie only discovered as she got older which makes hers even rarer.

It causes her to have infection and then she gets  pneumonia . The antibiotics made her sick and ahe started again so was taken back in last night.

We wish her well and have been chatting all day to the warriors as they asked how she was.

She will carry on with Chemo when she is back to normal, but she never rests.

dragonfly

Well I promised I would talk about my meeting yesterday at the Cancer Locality meet.

The NHS from the 1st May 2013 has made the Cancer Network employees Redundant and they have been finding new jobs.

The Cancer will carry on but in a different form. It will be mixed in with every other Medical  illness. Like Kidney and Liver and all other cancers.

So we will carry on meeting in groups but not as we know it now.

I feel it will spoil things and I will hang on in as I feel Mesothelioma will get lost -I might be wrong but I don’t feel Iam at the Moment.

If they realise they have made a mistake they will have lost their expertise as they will all be sorted out into new employment.

GP will be leading this so all Networks will be Amalgamated.

But one thing that is wonderful they are putting together our records and the whole path we are on in treatment on the computer and this will than be shared by the Doctors. So they will always have our records on hand and we wont have to keep repeating who we are and what is wrong with us.

Oh gosh the times we have to repeat to each Doctor. well that will be gone. from 2015.

There will be acute Oncology care so we will be involved in better treatment. Fast track will be used to get us into Chemo and Radiotherapy  and GP Support line.

The have gained all the info from the “In your shoes” this was a great success and they used the same process in every Department, even the surgeons were asked to take part so they now have a clear path to work to and info is being pulled together.

I asked if the Patient records could then go from Our Hospital to other hospitals where we travel for treatment and I was told yes that is what they want to achieve.

The Goverment has given all hospitals Money for software and from 27th February our hospital will be replacing all Radiotherapy machines. And a big And we will have the new Imaging Treatment for Cancer. This targets the tumours better.

On 1st May I have been invited to a Talk on Lung Cancer and a  Demonstration of the new Lung Shuttles in the Radiotherapy.

So Im looking forward to this.

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Not a lot has happened today, its been a wonderful sunny day after a very frosty start.

I have been baking cakes and bread and a Shepherds pie for dinner tonight.

Walked the dog and washing all done and put away.

Ray went out as he explained in his blog.

Shepherd's pie

Rays Blog http://mesoandme.wordpress.com/2013/02/19/tuesday-39/

Living With Mesothelioma -My Diary- Tea at the Ritz

Well that was a perfect weekend.

We traveled to Wexham and parked in our Sons and DIL’s drive. We had a Roast Beef dinner with Rhubarb crumble for sweet and sat and caught up on each others news.

We went to bed late and had a great sleep, that’s something we all say when we own a Motorhome, we all sleep so well in them.

Sunday we had a walk with Louis as Ray and our son went shopping and then it was a curry made and then chilled out all afternoon until it was time to have shower and get dressed up.

Off we went to London along the M4 all the way past Harrod’s

Harrods London

Harrods London

I love the shop I love people watching when Im in there.

We then arrived at the Ritz where Our Son and DIl dropped us off as they had paid for the evening for out Christmas Present.

http://www.theritzlondon.com/gallery/videos-en.html her is the official Video as you can see more that we could as the Tea is served in the front so you dont get to walk all over the hotel.

It is a really grand old building and I was so nervous but gradually I calmed down as I saw everyone was there and were just people like us. 2 People were there for a birthday treat and it was OK.

I went to the Loo and when I came back the You girl was telling Ray he was dressed properly.

He had a designer Jacket on ??? They wanted him in a dinner suit ? for Tea ??

So he went and put a Jacket on in the dressing room where a lot of men were having to put on whole suits.

So we entered  the dinning room.

I cant describe so I will show you the photos.

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You can kick yourself when a picture is blurred as you cant take it again

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Ray playing Mother.

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Looking to the ceiling

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It was wonderful and we had

Ray took a box out of his pocket and i thought he had bought me a ring for the Occasion. He had but it was my engaement ring given to me when i was 17. he sold a motorbike to pay for it.

It had really worn and I had left it in my jewelry box. Apparently Ray had found it and had been trying to get it remade but I was always with him so he took it to Derby and asked terry to try and get it remade. he took it to a Hatton Garden Jeweler who has really made a new ring and clasp to hole the hearts.

I was over the moon so I went to ask the pianist to play The way you look tonight. That was the song we played together on the Piano the night we met when I was 15 ,

The whole night ended up magical.

When we had to go home our Son and DIL were outside waiting for us and we drove home in a great mood as they had been to Buckingham palace and a lovely drive around so we were all happy.

We had Breakfast with them this morning and they went to work and we drove home.

We had a shower and then off out to a Cancer network meeting I will report that tomorrow

Traditional Afternoon Tea

  • Ham Sandwich with Grain Mustard Mayonnaise on White Bread
  • Cheddar Cheese Sandwich with Chutney on Onion Bread
  • Cucumber Sandwich with Cream Cheese, Dill, and Chives on Caraway Seed Bread
  • Chicken Breast Sandwich with Horseradish Cream on White Bread
  • Scottish Smoked Salmon with Lemon Butter on Rye Bread
  • Egg Mayonnaise Sandwich with Chopped Shallots and Watercress on White Bread
  • Freshly Baked Raisin and Plain Scones with Cornish Clotted Cream and Strawberry Preserve
  • Assortment of Afternoon Tea Pastries and Cakes
  • Pick Champagne and Pots of Tea.
  • the Waiters hovered around and made sure we enjoyed every  minute
  • Rays Blog http://mesoandme.wordpress.com/2013/02/18/monday-29/

Living With Mesothelioma -My Diary- things have been happening in our Skies today and another mention of me in the Paper today

Today is the day for heavenly bodies, how exciting.

This is a very close Asteriod and we will be watching it through the evening.

Although there is no danger of a collision, it’s still passing much closer than any other known asteroid and closer than many man made satellites.

But then this morning we saw on telly

http://rt.com/news/meteorite-crash-urals-chelyabinsk-283/

A meteor crashing in Russia’s Ural mountains has injured at least 950 people, as the shockwave blew out windows and rocked buildings.

What an amazing thing to happen but so frightening.

Well it has been a quiet day here though all though  my Halogen Oven did blow up, I dont think it had anything to do with the weird things going on in the skies ha ha !!

I had forgotten my shopping was coming today and I was in my dressing gown when the van pulled up and Ray had only just got out of the shower. Panic stations as we were running around trying to get dressed. Louis thought we were mad so he was racing around excited as well. The house was chaos.

I have another mention in the Medway paper it seems.

I was mention in an interview with the owner of the company.

asbest firm

In case the circled paragraph is unclear I’ll repeat it

Mrs Hales claimed there is no more protection to residents now, as some of her 14 workers already drive asbestos in and out of the site

Well now isn’t that something! –Naughty Naughty they have already as we suspected been working from here and the residents knew nothing until this new planning action for skips.

We all say we have no objections to the business as it is a good thing but not 100 ft from the first row of houses and a children s play area.

There are so many more business parks where it could have gone –right away from families.

A meeting will happen soon so I will attend and be behind the Residents.

See things do happen and then its all to  late

http://www.bbc.co.uk/news/uk-england-manchester-21470041

Factory fire

A huge fire has broken out at a former asbestos factory in Rochdale, Greater Manchester, the fire service said.

About 50 firefighters tackled the blaze after being called out just before 03:00 GMT to the old Turner and Newall site in Spodden Valley.

Manchester Fire and Rescue Service said the fire was now under control.

Tony Bryan, fire service hazardous materials officer, said an initial assessment of nearby houses showed no spread of contaminants.

He said: “We have identified some asbestos within the structure [of the factory] – but that has been contained into the area as it was covered by metal sheeting.

http://www.bbc.co.uk/news/uk-england-manchester-12187315

There was a huge fight by the residents and local people now its burnt down so it looks like they will have to make this safe.

Rochdale Council has refused planning permission for 600 homes on the site of a former asbestos factory.

The plan, first submitted in 2005, was to build new houses on the old Turner and Newall site in Spodden Valley.

Peter Rawlinson, Head of Planning at Rochdale Council, said there was not enough detail about how the site could be developed safely.

A spokesman for developers MMC Estates said a revised application would be submitted to the council.

Campaigner Jason Addy, of Save Spodden Valley, said a new “green” use for the site should be found.

Mr Rawlinson said developers MMC Estates could make a fresh application.

He added: “If they came back it would have to have full details of how the site could be reclaimed safely.”

Local people fought the £100m scheme fearing that building work could release harmful asbestos fibres into the air.

The power of the people.

http://mesoandme.wordpress.com/2013/02/15/friday-38/  Rays Blog

Living With Mesothelioma -My Diary- Valentine’s Day and Ray has a great Surprise

Today being 14th of Feb it is Valentin’ s day a very romantic day.

I have been hiding the cards as they were arriving for Ray from my lovely Mesowarrior friends. We wanted to bring a smile to his face. I waited and waited for the postman to bring the rest but we have to wait so long. Our Postman is always late. 1.30pm he was coming round as Louis told us as always.

What is it with dogs that they go mad at the postman. Di the dogs see it as a game. We have a maniac racing around and I have to really make him sit and wait. If im there and can control the running.

Today though he just sat there and waited. I went to collect all the cards and added the ones that came yesterday.

Rays face was a picture when he saw them all.

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Louis joined in the fun and ray still looked shocked

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They are still opening them –Thanks girls your plan was lovely and Ray has had a lovely Valentine.

We went off in the wonderful sunshine for a walk at Tankerton with Louis and to call in at the butchers and stock up with fresh meat for the Freezer. I  have really cleaned the freezer out and I found some beefburgers so they have gone into a drawer labeled for the dog along with some supermarket mince. He wont mind if he is eating horse meat but I hate the idea. to me they are pets like a dog so sorry, I have hated the deceit of all this.

The fight for the Lordswood residents is gaining momentum and there soon will be a meeting with everybody involved. i have been included in this meeting so i will report back when this happens.

Debbie has just gone to hospital to have bloods and she was supposed to have Chemo tomorrow. I dont know what will happen now bless her. Maybe if she gets the blood overnight she might be lucky to have Chemo tomorrow but I doubt that. She must be very disappointed, her temperature went right up and she has been complaining of a back ache.

I pray all goes well over night

hug 4

Group hug Debbie

Rays Blog http://mesoandme.wordpress.com/2013/02/14/thursday-34/

Living With Mesothelioma -My Diary- ITV is covering a Doner Card Week -My Personal story of why that means so much to us

Surgeons performing an operation

During this Valentine’s week (11th to 15th February), ITV will launch a new campaign, From The Heart, which is supported by NHS Blood and Transplant and aims to raise awareness of organ donation and the NHS Organ Donor Register.

In a special week of activity on-air and online, there will be a range of ITV shows highlighting the shortage of donated organs in the UK and the reasons behind it. They also will be sharing real life stories about people who have benefited from organ donation and whose lives have been transformed as well as encouraging viewers to join the Register and talk to their loved ones about their wishes.

Im afraid I have had personal experience of this albeit 35 years ago and I have always tried to raise awareness.

It is very hard when your sitting by your child on the life support machine, holding her foot as there is anywhere else to hold as all the tubes and bandages are on her pretty body. The Girl that a few hours before was running around to go out to the field by our house. Her boyfriend by her side even though she was only 16 she was in love as I was at that age and with a soldier as I was. She had asked if they could be engaged and how could I say no when I got engaged at 17.

I adored that lovely girl.

She was run over by a boy doing a wheely over her as Ray has written in our book

Christines Story Misadventure or Misjudged

http://www.lulu.com/shop/raymond-nye/christines-story-misadventure-or-misjudged/paperback/product-14939365.html;jsessionid=8530AA5E5C913A23D2B26517803A64D2

The thing that hurt the most was Im sitting there willing her to live and then the nurse is there asking for her kidneys for donating.

You really you cant think straight. No she is breathing she is going to get better. Go away and dont ask that.

We had to talk about it all Ray and I and I didnt know what Christina would want. Then I realised she was always helping others. I didn’t know she went to the old peoples flats once a week and gave them an egg each, A lady told me after she had died. She bought a box of eggs a week out of her pocket money.

So I know I made the right decision for her. I wish she had kept a Donner card  though.

We said to the nurse OK. We had to sit and wait for the team to fly in by helicopter and thy turned the life support off and took her away to remove her kidneys.

They went to 2 women. I rejected but the other lady was able to go back to work and supported her children.

So please fill in a Doner card and your children and talk to them so you know if -god forbid -they did die you will know their wishes.

http://www.patient.co.uk/support/NHS-Organ-Donor-Register.htm

More than 10,000 people in the UK need an organ transplant which could save or dramatically improve their lives. Many die each year before getting the transplant they need.

By choosingto carry a doner card or joining the NHS organ Doner Register, you could help make sure life goes on

You can join the NHS Organ Donor Register by:
Filling in a form online
Web:www.organdonation.nhs.uk/ukt//how_to_become_a_donor/how_to_become_a_donor.jspCalling the NHS Donor Line on 0300 123 23 23
(Lines are open 24 hours a day all year round. Calls are charged at your contracted rate for local calls)

By texting SAVE to 84118

You can also join when you are:

  • Registering for a driving licence
  • Applying for a Boots Advantage card
  • Registering at a GP surgery
  • Registering for a European Health Insurance Card (EHIC)

The website listed above also provides a lot of information about being an organ donor.

Last updated on 21/07/2012

Rays Blog http://mesoandme.wordpress.com/2013/02/12/tuesday-38/