Living With Mesothelioma -My Diary- Mesothelioma Bill moving again -We are in the middle of a lovely storm again -A Candle Lit for Ben Caplan xx

I dont have to say much about the weather as I will sound boring but —

http://www.mirror.co.uk/news/uk-news/uk-weather-flooding-risk-forecasters-3099490

Oh dear here we go again.

In West Coast they are under 10 feet of water in some place. No wonder they called for the Army to help.

army

http://www.bbc.co.uk/news/uk-england-somerset-25958076

“The fire service has met that need through its national specialist vehicles and trained staff,” he said.

But he added with the “potential for high winds and high tides and more rain” over the weekend on an “already soaked catchment” there was potential for further flooding.

“With that in mind we’re still working very closely with the military who remain in Somerset, planning with us,” he said.

They thought they could manage on their own with the Fire Services but flooding and high tides this weekend has brought danger and the Army is helping it does need all hands to the pump.

Well the winds are really blowing tonight how much more of this have we got to put up with it.

I had to stay in all day is getting so boring. there is only so much a gal can do’

http://doingsomethingpositive.blogspot.co.uk/2014/01/vansel-phase-1-clinical-drug-trial.html

Im so pleased Steve is off on his trial — Linda says

Now we know that Steve is definitely taking part in this Phase 1 study, I thought it might interest you to know a bit more about it.  If you want to know more about clinical drug trials and the difference between phase 1 and later phase trials click here, this link with take you to the Cancer research UK website where it’s explained very clearly .
The first part of the trial is a “dose escalation” study.  In this phase, 9-24 patients will receive vandetanib and a low dose of selumetinib to establish a safe dose to recommend for the next stage of the study.  If they don’t have any serious side effects, the next cohort of patients will have a higher dose of selumetinib, and so on, until they find the best dose to give.
Please read her blog —–
The Mesothelioma Bill is on the move again thanks to Tracey Crouch as she once again has her say xx
Update: Mesothelioma & the LASPO ActIn a short debate in Westminster Hall yesterday, Tracey and Parliamentary colleagues raised their concerns over the implementation of aspects of the Legal Aid, Sentencing & Punishment of Offenders (LASPO) Act 2012 and specifically, how it will impact on mesothelioma sufferers pursuing compensation.
Tracey has previously campaigned to exempt mesothelioma sufferers from changes within the Act regarding no-win no-fee arrangements and helped secure amendments as the legislation passed through Parliament last year, including the requirement for the Government to hold a review before implementing its changes.

Yesterday’s debate was a chance to discuss findings of the Government review and its decision to apply changes in the Act to mesothelioma sufferers – Tracey’s contribution and the rest of yesterday’s debate can be found on the link above —

427461_385409074818184_100000472859203_1477519_1564910131_n

I dont like having to say this but my dear friends son Ben has been found  just where they thought he had gone into the river Usk . RIP Dear Ben

My thoughts go to Bill and Betty –Gorman as we Campers know him by.

Rays Blog http://mesoandme.wordpress.com/2014/01/31/friday-82/

Living With Mesothelioma -My Diary- More storms to come so today must be the calm before the storm

We slept lovely last night back on our right places in the bed. How silly that you notice the difference. I did take extra drugs though so that was good.

Oh dear we have been told we are going to have this weather for another 2 months. I dont think our roofs will take all the high wind and we will be lucky to have all the slates on by summer.

DSCF9018A

The Salt marsh’s are getting better and the water has drained back for the lane so we shall see if the water can drain back after the next storm that is coming to blow us away at the weekend.

I think the pictures will be different then —During Friday we will see an Atlantic low pressure system start to make inroads across the UK. This will initially bring a spell of very wet and windy weather across much of the country during the course of Friday but as the rain bumps in to the colder air in the North of the UK we may see a temporary spell of sleet or snow to lower levels and above 300m we will see several hours of snowfall giving the risk of some localised disruption. There is also the risk during Saturday morning of showers turning wintry once again, perhaps to lower levels for a time too, though this is not currently expected to cause problems. – See more at: http://www.ukweatherforecast.co.uk/weather-watch-strong-winds-flooding/#sthash.yegK54q8.dpuf

We Did get out for a ride to the Station to buy the tickets for London Sunday, Ray went in and I walked with Louis round the road and then I stood and waited for Ray. I walked into the Carpark and Ray was there waiting for me. I didnt think he would be served that quick.

We went and did a bit of shopping and got home to the warm. ——-

I think the pictures will be different then —During Friday we will see an Atlantic low pressure system start to make inroads across the UK. This will initially bring a spell of very wet and windy weather across much of the country during the course of Friday but as the rain bumps in to the colder air in the North of the UK we may see a temporary spell of sleet or snow to lower levels and above 300m we will see several hours of snowfall giving the risk of some localised disruption. There is also the risk during Saturday morning of showers turning wintry once again, perhaps to lower levels for a time too, though this is not currently expected to cause problems. – See more at: http://www.ukweatherforecast.co.uk/weather-watch-strong-winds-flooding/#sthash.yegK54q8.dpuf

I have to share this with you, I know we dont always get the weather but just look at these places in UK. Im going to put this into our touring in the summer and have a look at our wonderful country.

http://www.buzzfeed.com/hilarywardle/12-places-youd-never-believe-were-in-the-uk-aplm

Ancient Greece?

I missed this when we went to Cornwall.

There was a piece today in a Scientific paper.

http://www.google.com/hostednews/afp/article/ALeqM5hZMlF-PxbP7OAZYv5tAFqazQI4VQ?docId=bd34d738-2cdc-44a2-b283-ad4e7c0f463e%22Antioxidants

Washington — People who smoke or have lung cancer should think twice about taking vitamin supplements, according to a Swedish study Wednesday that showed certain antioxidants may make tumors grow faster.

Lab mice that already had cancer were given vitamin E and a drug called acetylcysteine, which sped the growth of their tumors and made them die faster than mice that did not ingest supplements.

“Antioxidants caused a three-fold increase in the number of tumors and also tumor aggressiveness, and the antioxidants caused the mice to die twice as fast,” said study author Martin Bergo of the University of Gothenburg in Sweden.”If we gave a low dose, tumors increased a little bit. And if we gave a high dose, tumors increased a lot.”

Research on human lung cancer cells growing in a lab dish also showed that the antioxidants caused the cells to multiply faster than they would have alone, suggesting the same might happen in human patients.——————————————-

Just as Im using supplements. Nowadays we just dont know how to proceed, what is good and what is bad.

I think I have to stop playing around and eat my veggie meals and loads of fruit and loads of fresh vegetables although I have found out that Vitamins do not fade in cut fruit and Veg . Si you can buy a weeks shopping of them and keep them in the Veg box in the Fridge.

Rays Blog http://mesoandme.wordpress.com/2014/01/30/thursday-77/

Living With Mesothelioma -My Diary – A New Trial starts in UK and guess what it rained again.

This is getting boring but it rained all night again.

I asked Ray last night if he would swap side with me in bed as it easier for me to get up in the night. Gosh I should have kept quiet, I kept waking up with so much pain in my bad lung.

I kept rolling over on my left side and the left lung really didnt like it.  I kept dropping off to sleep and waking up. So I have had to take pain tablets most of the day. It makes me realise my ribs are weaker in the left side as well.

I got up but I felt so much better for being out of bed. I will sleep back on my side tonight.

Chatting on facebook we have a warrior starting a trial at Papworth so we will be watching  with interest’

http://www.cancerresearchuk.org/cancer-help/trials/a-trial-of-defactinib-vs-6063-for-pleural-mesothelioma

This trial is looking at a drug called defactinib to treat mesothelioma that started in the sheets of tissue covering the lungs (pleural mesothelioma).

Unfortunately, it can be difficult for doctors to treat pleural mesothelioma. You may havechemotherapy, but researchers are looking for ways to improve treatment. In this trial, they are looking at an experimental drug called defactinib.

Defactinib is a type of biological therapy. It stops signals that mesothelioma cells use to divide and grow.

The trial is comparing defactinib with a dummy drug (placebo). It is for people who have recently had chemotherapy and when they finished this treatment, their mesothelioma had got smaller or stayed the same size.

We wish our fellow warrior all the luck in the world and so hope this works for him as he said  (The bad news is It’s a whacking great lump of meso pressing against my oesophagus)

Each one of us has Meso in different ares of our bodies.

Talking a friend that has just sent some recipes to me, after 53 years married its hard to know what to make for dinner. 19 345 dinners ha ha !!

I went out today to get some fresh air so we went to shop local and buy fruit and salad and carrots. Carrots seem to be a wonder Veg for the vitamins to boost the immune system.

So Im juicing well and eating very healthy.

No wonder I liked going out for a meal for a rest !!!

Found this today which if it really does work it would be good for the summer nights we sit outside in a camp site, cant wait to see if it works .

gnat

 

 

 

 

 

 

 

 

 

 

http://www.kentonline.co.uk/medway_messenger/news/5m-revamp-of-emergency-department-11960/

Plans have been agreed for a major redevelopment of Medway’s A&E, which last year was branded “totally unsuitable” in a NHS report.

The developments will cost up to an estimated £5 million and key sections will be completed in time for winter 2014/2015 when the emergency department is under the greatest demand.

Medway Maritime Hospital in Gillingham

I was in one our meetings when this was discussed As Medway  Hospital is part of the East Kent Hospital, so its great to see it is going through.

Rays Blog http://mesoandme.wordpress.com/2014/01/29/wednesday-73/

Living With Mesothelioma -My Diary- A Food Train – and a Dinner and Dance to go to

Rain again –

Im really going to have to wrap up warm and get myself moving again, it is so easy to stay in doors but I feel I will end up being a recluse !!!!

I have been studying all the juicing and veggie to really help me to be serious I have managed for two days so its 1 day at a time.

I still keep hallucinating, I se things move and they are not. I sent Ray out as I said the fence was moving, It wasnt though and the bottom of the sink pedestal was moving. It wasnt. This afternoon I was asleep and there was a bang I saw Ray fall off the settee so I jumped up but it was Louis jumping off the settee. It is all down to the nerve blocker. Im not going mad honest

THE FOOD TRAIN

http://www.itv.com/news/border/story/2014-01-06/border-life/

Its is of an Interview of my Camping friend Michelle and the Food Train  She runs.

Our History

Food Train began in Dumfries in 1995 following a community survey of older people that found many of them struggling with their weekly grocery shopping; an idea was developed to ease this burden on older people.  A partnership of local shops and volunteers formed and Food Train began making deliveries of fresh groceries to older people in need with the help of local volunteers and shops.

Food Train operated very successfully in Dumfries town area between 1995 and 2002 but the founder members knew there was potential to expand the service across the region.  A four year funding package from the Scottish Executive ‘Better Neighbourhood Services Fund’ awarded in 2002 allowed staff to be recruited to develop Food Train and deliver grocery support across all Dumfries & Galloway.  By 2006 the grocery delivery service was fully operational across the region and the Board focused on the evidenced needs of the members and developed Food Train ‘EXTRA’ – an additional home support service.  More recently a third service has been added in Dumfries & Galloway, again responding to the needs of our elderly members with a befriending service helping those experiencing isolation and loneliness.

In 2008 we began researching, planning and preparing to expand Food Train into other parts of Scotland.  With support from The Scottish Government, Community Food & Health (Scotland) and The Rank Foundation, we have been able to expand Food Train into West Lothian, Stirling, Dundee, Glasgow and Renfrewshire, providing food access solutions to many more older people and clearly demonstrating our ability to transfer our successful model geographically.

Food Train is now a thriving multi award winning Charity supporting older people in 6 local authority areas in Scotland, with a view to developing further and wider across Scotland to bring food access to all Scotland’s older folk.

http://www.thefoodtrain.co.uk/who-we-are/our-history

If you feel you would like one in your area in he UK then contact or if you feel you could help contact them

IATP Invites you to join us at the beautiful Cranage Hall, Cheshire CW4 8EW for the 2014 Annual Dinner  ” The Great Gatsby”. Saturday 8th March 2014. The Dinner is a formal event aimed at awareness and funds for IATP’s chosen Charity DAST (Derbyshire Asbestos Support Team) The evening also includes the IATP Recognition Awards which honours individuals for their work and contribution across all areas of the Asbestos Industry.

The Tribute Tree will be at the Annual Dinner for anyone to pay tribute to family & friends that they have sadly lost to Asbestos Related Diseases. It is also there for individual to pay tribute and honour those that are still fighting these awful conditions.

The idea behind the Tribute Tree is not only to allow others to put special messages to there loved ones on, but as a visual reminder of the tragedy asbestos can bring.

There will be no fee to put tags on, but donations are welcome, which will then either be passed on to charity or used to set up some kind of permanent tribute.

You don’t have to be attending the Annual Dinner to put a message on the tree. Tag will be available to request from the start of next week. Please feel free to email events@iatp.org.uk for more information.

“Raising Awareness of the Danger of Asbestos”

tree

Photo: The Silk Street Jazz band will be playing live at the IATP 2014 Annual Dinner

The Silk Street Jazz band will be playing live at the IATP 2014 Annual Dinner

 

Living With Mesothelioma -My diary- Lots of advice on my eating today.

Photo

The sun did actually show today but rain and last night a little snow so we are getting colder.

If anyone receives an email from me with just a link -dont open it Im having to scan my computer to get rid of what ever sent out to my contacts. Lucky it is going into spam most times.

I do feel so embarrassed when people email me to tell this has happened. It happened once before but at least this is going into peoples spam box.

As you can see I have spent an afternoon studying  things and keeo my mind open. I can see that 4 Chemos have broken my Immune system and my liver and my marrow bone and they need mending if Im to keep surviving. http://www.health.harvard.edu/flu-resource-center/how-to-boost-your-immune-system.htm

Anthony who is a fellow warrior told me last night,  no preservatives, you want the planters all fruit jellys are ok to eat, and stevia is a great sugar subsitude Lets  get going ——

Mavis why dont you try this veggie diet, cancer is microscopic, its the cell that are mutated so i figure work at what we know, cancer cells need energy to enjoy the day, deny it the sugars the fats that run thier little motors and make it as hard on them little monsters as you can — Iask what to eat at night when Im hungry –apples cherry grapes sweet potatoe or maybe ill eat a cashew butter or almond butter and jelly sandwich –when you think you eat such a variety it doesnt seem to bad.

http://premaseem.wordpress.com/2012/12/19/how-to-avoid-cancer/ this is the most sensible blog I have read that explains to me where Cancer comes from and why I should give a Veggie diet a chance.

AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY IS THE ONLY WAY TO TRY AND ELIMINATE CANCER, JOHNS HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY …

1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size.

2. Cancer cells occur between 6 to more than 10 times in a person’s lifetime.

3. When the person’s immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors.

4. When a person has cancer it indicates the person has multiple nutritional deficiencies. These could be due to genetic, environmental, food and lifestyle factors.

5. To overcome the multiple nutritional deficiencies, changing diet and including supplements will strengthen the immune system.

6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastro-intestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc.

7. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs.

8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of chemotherapy and radiation do not result in more tumor destruction.

9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either compromised or destroyed, hence the person can succumb to various kinds of infections and complications.

10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.

11. An effective way to battle cancer is to STARVE the cancer cells by not feeding it with foods it needs to multiple.
What cancer cells feed on:
a. Sugar is a cancer-feeder. By cutting off sugar it cuts off one important food supply to the cancer cells. Note: Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses but only in very small amounts. Table salt has a chemical added to make it white in colour. Better alternative is Bragg’s aminos or sea salt.

b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soy milk, cancer cells will starved.

c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little chicken rather than beef or pork. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer.

d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within 15 minutes t o nourish and enhance growth of healthy cells.
To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including bean sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C).

e. Avoid coffee, tea, and chocolate, which have high caffeine. Green tea is a better alternative and has cancer-fighting properties. Water–best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it.

12. Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in the intestines will become putrified and leads to more toxic buildup.

13. Cancer cell walls have a tough protein covering. By refraining from or eating less meat it frees more enzymes to attack the protein walls of cancer cells and allows the body’s killer cells to destroy the cancer cells.

14. Some supplements build up the immune system (IP6, Flor-ssence, Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the body’s own killer cells to destroy cancer cells. Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body’s normal method of disposing of damaged, unwanted, or unneeded cells.

15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor.
Anger, unforgiving and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life.

16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer cells.

Rays Blog http://mesoandme.wordpress.com/2014/01/27/monday-72/

Living With Mesothelioma -My Diary – Rain Again -but a lovely surprise

rain 1

I just cant believe the heavy rain that is falling down and the high winds . Yesterday we had what I thought was a small tornado as it took some cardboard round and round  and dumped them onto the garden.

Last Night I kept chatting to Linda who had flown in at last after a days delay at Guernsey, she finally got to Bassingstoke station just as they stopped the trains because of a tree on the lines. How frustrating. I chatted to her to keep he company as Steve had a 1.5 hour journey to her from Oxford.

http://doingsomethingpositive.blogspot.co.uk/2014/01/that-was-week-that-was.html

Today is another wash out. the winds blow up so  strong and then the Rain really hurts if you are out in it. What makes me laugh that you would thing the car and the M/home would be so clean but they are not, although it is a good idea to wash down the M/home in the rain as it takes all the soap off, I cant convince Ray though !!!

My Son phoned and said he had ticket for Sadler’s Wells –Oh Ballet, Swan Lake , no Bollywood. Oh Great I have always wanted to see a professional dance. So I can tick this of my Bucket list !!

bolleywood 2

Sadler’s Wells Booking

Thank you for booking online. Your booking details are as follows:

The Merchants of Bollywood Peacock Theatre (Holborn, WC2)
bollywood
nanny mac
Its been a case of sitting around looking out at the rain But I have seen some good telly so Im not that badly off.
I even watch Nanny Mc MacPhee yesterday
 I found it very funny but Ray went tom his computer, bless him.
I have got to share this I put it on my wall in Facebook.
PLEASE SHARE: It could save a mans life!! This story posted by a guy on Reddit really amazed me. Basically he was in his bathroom one day and found his ex girlfriends pregnancy test kit. For a bit of a laugh he decided to pee on it.
PLEASE SHARE: It could save a mans life!!This story posted by a guy on Reddit really amazed me. Basically he was in his bathroom one day and found his ex girlfriends pregnancy test kit. For a bit of a laugh he decided to pee on it. To his utter shock and surprise, the results came up with 2 lines as per the image below. This as we all know basically means he is pregnant right? Well obviously he is not pregnant but he thought it was really funny anyway.
He took to Reddit where he posted the picture. In the comments someone said “if this is true, you should check yourself for testicular cancer” and that he needed to get to his GP as soon as possible. It was lucky this chain of events happened as when his GP checked him over, it turned out that he had testicular cancer. He was fortunate enough to catch it in the early stages.
So what is going on here? Well the pregnancy test is actually looking for something called Human chorionic gonadotropin HCG This is produced in the placenta of a woman and is thus a good test of pregnancy. It turns out that HCG is also produced by men who suffer from testicular cancer.
preg test
bet you didnt know this
Dave Wybrow It is true since the hormone level (Chroionic Gonadotrophin) is raised EITHER by pregnancy (female only of course) or by some forms of testicular cancer – (male only of course), so this is true…..
I don’t think anyone is suggesting this should be the only way of checking – far from it and I doubt that many blokes would even think about doing it….. the key point is self examination and then see the GP and ask for an urgent referral if you are not 100% happy. Some GP’s are not as well versed as others……. In the end the key point is to check oneself and if unsure get professional advice RAPIDLY.
Very good comments

Living With Mesothelioma -My Diary- A quieter day.

Woke up yesterday and remembered I had to get up early as I had ordered shopping on line. I do hate walking around the supermarket and Im picking up things but when I get home I dont fancy them.

So as Waitrose were offering free delivery and a bottle of Champagne, I would give them a try. Their shop is in Canterbury but as we only go by bus into Canterbury and the shop is a way from the High Street, I have never been in there.

Dead on 10 o’clock the van arrived and the young man that delivered , was very pleasant, very efficient. Im very impressed by the shopping. Price’s are on par of Marks and Spencers unless you buy 3 of everything –3 for the price of two., then it is cheap, but then again I dont want 3 of everything.

By the time I put all that away in the cupboards, fridge and freezer, it was time for a cuppa and a sit down.

Messages of sympathy have poured in for Jan  such a unhappy time for the Warriors. Frightening for those of us that are advanced in the disease. Especial Tess and I as the woman with the Meso are now very thin on the ground and so its getting harder to talk to people about the different things to do with Meso. Men dont come on the Facebook and talk so freely as women. There are many carers and they do say what their partners are going through.

For those that need to know The celebration of Jan’s life will take place on Monday 3rd February. St Clare’s church, Newton Aycliffe, County Durham, DL5 5NT. 11am. At the request of the family, donations would be appreciated in lieu of flowers, to Mick Knighton Mesothelioma research or Macmillan nurses. In the memory of Jan’s tireless work.xxx

I will put a donation To Macmillan.

I have been reading that Butter is now good for you. Another U turn!! So

butter

It was supposed to clog up arteries once but no mention of that now.

Sweeteners are bad so I suppose we should go back to sugar???

We live in a funny old world and You should have what ever you want–within reason.

Cream cake please.

Just a little one !!

Rays Blog http://mesoandme.wordpress.com/2014/01/24/friday-81/

I have re done the BBC Sunday politics Video today. The new version on you tube is edited. The unedited one is the full program. But the edited one ,now goes straight into the interview thus missing out the early bit which has nothing to do with… [ 105 more words. ]

Living With Mesothelioma-My Diary- Night to our dear friend Jan, And to Katrina’s Dad you both have earnt your wings

I Had a letter from the Local Lions club inviting me to a fund raising –guess what, which charity — Meso UK. they saw me on Sunday on Telly Bless and her son- inlaw has just been diagnosed I will try and persuade him to join the Warriors but I was able to help on the phone for him to go and get a second opinion. You cant tell a young man in his 40’s that there is nothing for him. We have heard that so many times. So I will be going to a Murder Mystery evening in our local community centre.

Another friend has Emailed me (we have many people who dont want to be on Face Book so like Jan I have Mesowarriors that we keep in contact with and help as much as we can.

But I hate to see another warrior has gone over the Rainbow Bridge .

Hi Mavis,

I wanted to thank you for your time, advice and hope you provided through the passed 12 months.

Unfortunately we lost our father to mesothelioma on Sunday. I truly hope time is a healer.
Wishing you all the best in your continued fight. X
Katrina

So sad as well as another sad day as Jan lost her battle this morning . Gosh it seems the world is crying as so many people have message d me and spoke on face book all about the wonder lady she was. It funny I went to bed knowing she was in her last sleep with her husband Gary and her to lovely dogs. But I couldnt sleep and then found I had been in and out of sleep. I woke up at 3 and gradually the room went cold and my nose felt funny as that was even colder. it warmed up at 4.30.

I put on face book when I found out at 7 that she had gone in peace. Then I found out she had died at 5.15. but her breathing had change about an hour before . I love that the thought that she might have passed by to say goodbye.

Later on my Facebook played up and put the things, I was writing on in our flower club, on about 3 or 4 times on one entry repeating itself. The other warriors in the club said it was ok on theirs. I said I know it was Debbie and Jan to let me know they had met up, well I love to know that they had and they would play as Debbie was like that .

So we say goodbye to Jan so sad xx

Photo: I just had to post this picture of Jan and one of  her big huge dogs she loved so much

Natashia put a lovely photo on I do love the word s

Fly away my angel,
Spread your wings and fly;
Take the beauty of your soul,
And share it with the sky.

 ☆  ☆  ☆  ☆

Take the warmth within your heart,
And put the sun to shame;
The glow of summer’s sunlight.
Will never be the same.

 ☆  ☆  ☆  ☆

Take the strength within your soul,
From your heart, the tenderness there;
Behold the majesty of the sky,
It’s beauty does not compare.

 ☆  ☆♥ ☆  ☆

Take the splendour of the stars,
That twinkle in the sky;
It fades in the matchless sparkle,
Of the beauty there in your eyes.

 ☆  ☆  ☆  ☆

Fly away my Angel,
For I have set you free;
I will wait here patiently,
Until you fly back to me. — with Jan Egerton in Heighington.

1_AngelLilstarDust

 

 

 

 

 

 

 

 

 

 

 

 

Rays Blog http://mesoandme.wordpress.com/2014/01/23/thursday-76/

Living With Mesothelioma -My Diary- Email from St Barts has given me hope again- Lord Saatchi’s Bill and a Warrior is in trouble tonight

I have had a lovely day busy and exciting at times .

My lovely Doctor at St Barts has emailed for info of my treatment so far. He wanted a list so I have given it  to him .

Thankyou for replying
I had Cisplatin and Alimita
Then the Trial At Maidstone that didnt stop growth of vinorelbine and Phase 3 NGR-hTNF  
Alimita/Cisplatin  but after 2  I became so sick and allergic but it worked and there was a reduction
Gem/carbo hasnt worked It seems that there is further deterioration when compared to the previous scan. The previously seen pieural based  Opacities ( in lungs is the part that  consists of the supporting structures such as pulmonary vessels, bronchi, and connective tissue) in the left lung have slightly increased in sized.
The marker tumour has increased to 3.0×2.5cm from 2.7×1.9cm this lies in aortic arch this one is very sore when i touch the area.
Anothermarker opacity in the line of the oblique fissure measures 3.8×2.4cm. before it measured 3.6×2.2ccm.
there is no pleural effusion. there is no evidence of lung mass in the right lung. in the abdomen there is no significant lympnadenopathy.(Lymphadenopathy is a broad term meaning “disease of the lymph nodes”, and is often used as a synonym for swollen or enlarged lymph nodes. )
A 1cm lession in the liver no significant change. Right kidney is atrophic  (complete wasting away of a part of the body I do know that since I was 2years old the left kidney is very strong and has served me well through chemos . bless it xx
So really this is good news, I know you wouldnt think it was something to be happy about but from where Im standing it means the growth is very small and that prvious chemos had shrink it all down. The measurements are not what it was when I went in for the 3 rd Chemo when that marker was 17cm.
I told Doc Chominos that  I dont want any treatment until I have got my body stronger. Walking with a stick because I fall over is not where I want to be.
She was happy with that and said she backs me all the way. If I feel distressed about any pains etc etc because I thought it was growing faster to call her. She has tried to get me into a trial but they have said there is no trials for 4th liners. She said I dont understand why they said that. Now to hear her say that makes me think If I was to push it she would get me in. But I just want to sit back and lick my wounds and then pounce.
Hope this gives you a good ground to work on –but I can see 5th line hasnt been catered for yet But I hope they catch up with me surviving so long and still have a good mind and still campaigning.
Love from Mavis
 I hope they can work out what I have had and if they have something for me to try out.
Well then Lord Saatchi has made an announcement  Calling all Meso Warriors!!!!!!
The Secretary of State for health, Jeremy Hunt , is putting the bill out for public consultation. If there is enough support for this bill through the consultation then the Bill will become Law. This could be a big step forward for us all.
I would urge you all to take a look at this www.saatchibill.tumblr.com and send your support. Their aim is to achieve the biggest response ever to a such a consultation . They only have this one chance and if it fails there is no second chance.
I signed in and then it was tweeted by IATP and Lord Saatchi tweeted to me that he is following my Blog. I get moments when Im speechless and this was one of them. I almost stood up and did a curtsy. A very humbling moment Sir.
So come on everyone lets get behind this Bill and support my new friend xx
Then the day got very sad. Jans friend came on Facebook and told us the news, we sort of had expected , but didnt want to happen. Jan had the very huge dose of Radiotherapy last Friday and has been in great pain ever since. Her friend told us she had fallen into a sleep and her husband was with her and her two very large dogs where with her.
Jan was diagnosed in 2004 and she had the operation where they take the lining of the lung away –called debullking.
They give you a false diaphragm. After 10 years and a lot of pain the Meso broke out to the stomach and other areas. She has had to have a drain in to the stomach as the fluids built up.
So here pathway is becoming shorter.
 jan1111
Keep fighting Jan my dear friend I said I wasn’t going to get close to anyone after Debbie shocked my world. Well we did get very close didn’t we and whispered so much that we didn’t tell the world. Our real feelings of how frightened we were and how we didn’t want to leave our families. I kept telling you off for not being positive but you told me off on the times I was negative as we were from time to time . Goodnight and have a lovely sleep tonight then you might feel a little stronger in the morning.

Living With Mesothelioma -My Diary- Chasing a Guinea Fowl and Trials and Treatment.

Had a bit of fun today.

Woke up to a deep frost that the sun melted off. Didn’t get to do my house work today Ray got in before I had come off the computer.

I have been asked why I talk about my housework but I said that when I dont means I can no longer do it . Its a sort of gauge to what I can do, what I have the energy for. When there is two of you though it cuts the time down anyway.

I did some lunch and then I wanted to go for a walk. We did the old round walk. The last time I did that I fell over and hit my head and was rushed to the walk in Medical Centre for stitches.

I had my stick today and my special shoes so we went of quiet fast but I  gradually slowed down. Ray is getting problems with his knees, goodness we are a pair. I think he has strained them by walking different with his bad back. I now know why women marry toy boys so when they are old they have someone still young to nurse them in their old age !!!

We got back to the Lane  and crossed over to walk on the grass verge, we passed the RSPA van parked. A man walked into the garden opposite carrying a net –strange and then out of the garden came

Guinea Fowl running with the RSPA man running behind but he couldn’t catch it.
gf2

gf1

 

 

 

 

 

 

 

 

 

 

This meant it was in the road and stopping all the traffic. It went into another garden but I saw it come out and cross over the road. So Ray walked up and told the man. he came out but it had come into our  Park. The RSPCA man came back to his car to ride around but I fear he didn’t catch it and I said it will be able to get back to the countryside easy from our park.

Well that was the end of the excitement.

Through Tess asking on FBook about Radiotherapy we have found out a new trial has opened in ST Barts  The TRAP trial http://is.ieis.tue.nl/?p=1053

Arginine deprivation is a novel antimetabolite strategy for the treatment of arginine-dependent cancers that exploits differential expression and regulation of key urea cycle enzymes. Several studies have focused on inactivation of argininosuccinate synthetase 1 (ASS1) in a range of malignancies, including melanoma, hepatocellular carcinoma, and mesothelioma. Promoter methylation, in particular, has been identified as a mechanism for loss of the tumor suppressor role of ASS1 leading to tumoral dependence on exogenous arginine. Clinical trials of several arginine depletors are ongoing, including pegylated arginine deiminase (ADI-PEG20, Polaris Group, US) and bioengineered forms of human arginase. The challenge will be to identify tumors sensitive to arginine depletors, and integrate these agents into multimodality drug regimens using predictive biomarkers. Here, we have applied a bioinformatic approach to identify tractable pathways with ADI-PEG20 in the treatment of patients with mesothelioma. Recently, our phase 2 study of ADI-PEG20 in mesothelioma (ADAM) completed accrual and we are now launching a phase I combinatorial trial (TRAP) in the UK based on our bioinformatics studies.

The thing is the tumours have to be dormant so its not for me, again.

I was told at K&Canterbury That I couldn’t have Radiotherepy but Tess has said Jeremy Steele mentioned it so I have emailed him as I owed him a Happy New Year and sent the link to my TV appearance as they are always interested in all I have done in the past. I have finally confessed to them my Gem/Carbo that they recommended didn’t work. That the growth is 2mm in every 3 months so I will wait to see what they say.

Once again its me doing the work to find a hope somewhere.

http://www.cancerresearchuk.org/cancer-help/type/mesothelioma/treatment/radiotherapy-for-mesothelioma

Radiotherapy uses high energy rays to kill cancer cells. It is not usually used for peritoneal mesothelioma because it causes too many side effects. But you may have a course of intensity modulated radiotherapy treatments after surgery for early mesothelioma in the chest (pleural mesothelioma), to try to stop the cancer coming back. 

In advanced pleural mesothelioma, where surgery is not possible, some people may have radiotherapy. This is to try to slow the cancer down and keep it under control. Radiotherapy may also be used to try to control symptoms in advanced pleural mesothelioma. It can help to control pain.

http://mesoandme.wordpress.com/2014/01/21/tuesday-81/