Living with Mesothelioma –My Diary– Careful pictures of spiders although one is taking the mickie out of Ray

Ray was shouting at me from the porch last night that there was a huge spider, get the spray. He said he couldn’t kill it with a slipper because it was sooooooo big?

I got the spray but it had run out of  the gap we have between the porch base and the brick skirt that is built around the Parkhome.

Well he is lurking in the basement now among the ladders and the Christmas lights and all the junk we have stored underneath.

Low and behold Debbie puts a spider on her Facebook for us to identify

 

Well it is autumn and they are all preparing to come in for the winter–not a good thought so I really must get some conkers this weekend from somewhere.

There are a few really big conker trees at Seasalter and hundreds of conkers on the ground. 2 big ones in a pub garden with the seating underneath them. So I will go on a hunt for them.

Ray work hard finishing our window sill and then tidying the carpet in the motorhome so that is the silly jobs done.

I have had an email inviting me to another hospital meeting in November so my diary for November is growing with meetings and conferences, I do hope I can bring changes in how they see a patient and that they do uniform treatment for Mesothelioma.

My Macmillan nurse has explained the trial team will be there at the first one so I will be very interested in what they have to say, as there are a lot of new trials starting next year as the government has released money for them for 2013.

I have to get the house ready tomorrow for a film crew that is coming here from the British Lung Foundation as Im helping them with British Lung Foundation annual review.

Just another ordinary day in the life of a Mesowarrior ha! ha!

If nothing else it does keep me positive and I do enjoy helping anyone who will listen about Mesothelioma. I have gained a lot of knowledge as I need to know and help myself on this journey.

We did go out in the fresh air for a walk and Louis enjoyed a run, in the sun, which has been beaming all day.

I will give him a shower tomorrow so that he is sparkling white for the cameras.

Mind you we had the photos, that the Daily Mail didn’t have room to show, arrive today.

Louis joined in and had fun

Louis really did Pose on that day

Rays Blog http://mesoandme.wordpress.com/2012/10/16/tuesday-23/

http://www.scoop.it/t/asbestos-news/p/3000601150/uk-news-for-the-bbc-asbestos-report-order-to-schools

Cwmcarn High School

All schools in Wales must deliver reports on their asbestos levels by next week, Education Minister Leighton Andrews has announced.

Mr Andrews made the decision after Cwmcarn High School in Caerphilly county closed unexpectedly because of asbestos concerns last Friday.

He called the situation at Cwmcarn difficult and said councils had clear legal duties to do annual surveys.

He also announced that Cwmcarn will partially reopen on Friday.

Mr Andrews said it was well known that many schools in Wales built between the 1950s and 1980s contained asbestos.

—————————————————————————————————————————————

Well that’s a great start maybe the children will now get the safe schools the deserve. There are so many schools in bad repair where the Asbestos is not safe.
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Living with Mesothelioma -My Diary– the Waverly came to town

I slept in till 8am -that was great but it means by the time you get up and have breakfast then shower the morning is nearly gone.

The weekend must have been wearing us out ha ha !!

I did have fun but enough to make me sleep 9 hours is unheard of.

I did the housework so Ray could get on painting the windowsill.

washing caught up with and out on the line –I felt good. Today has been a good day.

Off we went to Tankerton slopes and gave Louis a good long walk. We sa the Windfarm as it was fully in the sunlight.

We could hear a ships horn going really loud but we couldn’t see a boat that was responsible.

We walked round to Tankerton High street and then back onto the seafront and there was the Waverley Kingswear Castle coming out of Whitstable Harbour.

She is such  a sweet boat.The last paddle steamer on her way to Hernebay.

The PS Kingswear Castle is a steamship. She is a coal-fired river paddle steamer, dating from 1924 with engines from 1904. She now runs summer excursions on the River Medway and the Thames. Kingswear Castle is listed on the National Historic Fleet, Core Collection of ships of “Pre-eminent National Significance”.

http://en.wikipedia.org/wiki/PS_Kingswear_Castle

The last Apartment is to be sold in my Favorite building site which over looks my special Tankerton slopes –wouldn’t Louis be happy here running out of here each morning and chasing the seagulls.

Then straight down onto the beach for a swim. The only thing is the winter north wind blows in so cold and lashes the rain down hmmm maybe it wouldn’t be a good idea.

We are now tucked up in the warm all snuggly and happy.

I received a great email from cancer research

David Cameron announced a new ‘radiotherapy innovation fund’ this week. He’s making £15million available to the NHS in England so that by April 2013, more cancer patients can benefit from advanced radiotherapy like intensity-modulated radiotherapy(IMRT).

The money has become available because the Government’s Cancer Drugs Fund – set up to make new cancer drugs available to patients who need them – is under budget.

So between now and April 2013, radiotherapy centres in England will be able to bid for this money to boost their services. The Prime Minister also guaranteed that from April all patients in England will always be able to access the radiotherapy treatments that their doctors think they need, including advanced radiotherapy such as IMRT or stereotactic radiosurgery, regardless of where they live.

This is fantastic news, for several reasons.

http://scienceblog.cancerresearchuk.org/2012/10/11/government-radiotherapy-announcement-is-fantastic-news-for-patients/?utm_campaign=ccm_octsolus151012&utm_content=84618791124&utm_medium=email&utm_source=Emailvision

Thats great news but us warriors must now make sure it comes to Mesothelioma.

Rays Blog http://mesoandme.wordpress.com/2012/10/15/its-monday-4/

Living with Mesothelioma -My Diary- The end of a lovely weekend x

Well Im home and settled in after having such a great weekend it has been wonderful.

After going to bed late again last night we woke up to the sun shinning through the heiki I knew it was going to be a good day.

I made our coffee and took Louis for walk but he just wouldnt go for a wee. All he did was sniff the grass, gosh I hate him when he does this, such a frustrating dog at times.

Then we went off for a walk into Queensborough,  A land Rover came by and the occupants were waving madly at us and shouting at hello!!! and then I realised it was the Site Owner Stephen. he stopped and asked us where were going, so we told him for a walk. He gave us instructions to walk to Queenbury harbour and left us with, if you get to tired phone and I will pick you up. How sweet was that. He has been the perfect host all weekend.

We have been enthralled with the views this weekend, with the way the colours have changed as the clouds have come over and the sun keeps appearing and disappearing. There are geese on the water and birds in the sky. Ships siren have blown and their engines sounding as they pass by.

We walked until I got tired and then came back to the site where I cooked Sunday breakfast, by this time everybody was awake and out so we sat around by the Motorhome’s chatting the rest of the day.

It came to where we just had to say goodbye –you have to say it sometime.

Thanks everyone for a relaxing happy weekend.

Rays Blog http://mesoandme.wordpress.com/2012/10/14/sunday-23/

Info for my Brothers as they read this blog — Tess my friend and patner in meso crime has written

I was given some interesting figures this week by my oncologist. They have been analysing data relating to mesothelioma patients diagnosed with the disease between 2010 and 2012 in my health authority.
In this time 170 new patients have been diagnosed with pleural meso ( a rare disease????)
Between 40%-60% got to first line chemo and it only worked for approx 25% of these patients.
Of those getting through first line treatment only 17 patients got to receive 2nd line chemo. They have no figures beyond this. Patients may not get to first line chemo because: they are diagnosed too late for treatment; are too unwell to receive treatment; choose not to have chemotherapy treatment; or sadly die before ever getting to the referral stage.

http://tessgully.blogspot.co.uk/

This is making me feel very nervous as I must be in an even lesser figure that have had  3rd line and when it grows again I will be in an even lesser figure to that to have 4th line –my odds are getting smaller xxx

Im just amazed that out of 107 —17 had second line. I would have thought the figure would be higher. I would love to know all the reasons why the others didnt have Chemo. Also as the Medway towns would be in this figure and only 107 have been diagnosed in 2 years when meday was such a hot spot. The Dockyard closed so some would have moved out of the area I suppose!!

Thanks Tess for telling us though.

Living with Mesothelioma -My Diary- A Happy Day today –

MR Happy

A day that starts so quiet and yet gets more happier as it goes on is very good medicine.

First on face book a photo of  a rescue that have become friends in the centre.

Ready Ahhhhh

Photo: They think they're brother and sister. I think I'm in love.

I wish I could have this cute pair xxx

All us warriors put our comments on a published article where they say Asbestos isnt dangerous –why do these people say such things without checking their facts.

“The general public is very ignorant about asbestos, in that they don’t understand that they do breathe it from the ambient air outside every day,” Swain said.

We simply don’t breathe in concentrated levels of asbestos for prolonged periods, which is when the substance becomes dangerous.

“Typically those individuals that become sick as a result of it are those that have dealt with it day in and day out of their occupational exposure,” he added.

I only washed clothes I didnt work with it day in day out  –IDIOT!!!! Mr Swain.

http://www.krmg.com/news/news/local/asbestos/nSYRs/

My Comments is there with Debbies and Mary who is a Nurse practitioner in the US

My comment –Mr Swain you need educating in the dangers of Asbestos. All I did was wash my husbands clothes and cuddled him as he came home from work. I didnt work with asbestos I was 20 years old and at 69 I couldn’t breath and I was diagnosed with Mesothelioma.
It only takes one fibre to cause this dreaded disease.
Asbestos is a death sentence -incurable cancer has grown around the lining of my lung . I have endured 3 rounds of Chemo and it wont be my last as I fight to live.
Please go away and write the true facts of Asbestos as it is so sad to see someone so ignorant about Asbestos and that money and greed is still causing people to us Asbestos.

Gosh we are forever fighting a battle somewhere.

Ray wanted to get some wood -he has told the story of the window sill in his blog -and of coarse I was right it was damp. We had bought a damp meter and yes it bleep around the lump that appeared in the window sill. What I cant get over was the fact what we thought was a wooden sill it was made of compress cardboard. We at least thought it was going to be wood chip or MDF. Gosh dont they cheat nowadays. The days of real wood are gone in the building trade. Ray made my kitchen in real wood and any job he does he uses wood.

But at least it isn’t a serious problem as i thought it was rain getting in. We have had so much rain it never have surprised me. Now I have a lovely wooden window sill and he has promised me he will do all of them.

Lots of walking with Louis today I have had a good day. Then my friend Sonja said she had got booked into a good site for the weekend and I phoned and got in as well. We have been wanting to stay there all summer but it was always full.

Leo Bay

Lovely views over the river Swale. I will be able to write about it when we have been –excited.

I really love the fact my Grandson is now standing on his own two feet. Place to live, a good job, and is really happy.

Out with friends .

Dan on the left with all his Film making friends –the photo is by Natalie Taylor

You do worry for them don’t you but they all find a place in the world.

The rain is pouring down now –really pouring

Rays Blog http://mesoandme.wordpress.com/2012/10/11/thursday-17/

Living with Mesothelioma -My Diary- Nearly missed my flu jab

I didnt get dressed today for ages as I was shattered yesterday and had eyes on stalks by the time I went to bed.

So much googling and reading the screen all day wears the eyes out.

I chatted to friends and read my Facebook and then I read how people were having their Flu Jabs–I said to Ray we must be being missed we haven’t had an appointment yet.

Ray phoned and found out they have been doing it since SEPT !!!

The Receptionist said they will not be sending out appointments to save money, the last session 27th Oct I have just made it.

I wasn’t happy as that clashed with our going camping so Ray contacted another surgery and they found us an appointment on the 20th Oct —at the same surgery as the other appointment –crazy.

They said they had told us on an advert on the prescriptions — I don’t have prescriptions my chemist deals with the ordering of my pain killers.

I would have thought they kept a list of patients that really musnt get the flu as it would kill them.

I can raise this at my next meeting as a Patient Representative.

So Ray went to his exercise regime with the  Physio.

He came back with rather worrying news that his back is locking up (please read his blog)

It would seem that if the Physio manipulated his back the spine could snap –We were going to a Bone crusher –Ekkk!!! that could have gone so badly wrong.

So he now has to have his team meet and see where he goes from here.

Myeloma mesothelioma how alike the names are, Ray has started a great site where he is collecting info as we warriors do we have to now reach the people that would need such a site so he can be in contact with fellow sufferers.

http://ramos72.wix.com/a-myloma-journey#!home/mainPage

I made a lovely home made soup it tasted so good but was made by me cooking things left in the fridge, carrots, parsnip, tomatoes, mushrooms, and curry powder and any spices I had and an OXO.

I Liquidized everything and we eat some as I have now a lot left for tomorrow and the next day so I had better freeze it or we ill get fed up with it.

It was such a good day with the sun out so I suggested going to Faversham to give Louis a lovely play in the park.

There was a Fun fair set up but nothing going on as it is there for the Carnival on Saturday. Thats late in the year for a carnival.

Not a lot there so maybe they havent set it up yet?

We stopped at the farm shop on the way home and I bought all my fresh veg and lovely plums and raspberries.

The farmers wife is really nice and friendly and she helps me choose nice vegetables –my super foods.

Got back home and it was soon dinner time. I have been drinking a fab fruit juice made with cherries and apples, with my dinner and I had a great fresh salad with the beetroot, lettuce and vine tomatoes i had bought today.

A great day again.

http://mesoandme.wordpress.com/2012/10/10/wednesday-15/  Rays blog

Living with Mesothelioma -My Diary- Looking for Trials is a Minefield

Tankerton slopes (photo: Harold Wyld)

 

I have spent most of the day researching trials -we cancer patients have to search for our own as there aren’t many in the official Trials Gov.co

http://clinicaltrials.gov/ct2/show/NCT00513877?term=mesothelioma&recr=Recruiting&type=Intr&cntry1=EU%3AGB&rank=1

Linda Wride share this one with me that Steve was on and had 3 years of good time but he is now back into Treatment

I found the Royal Marsden Trials http://www.royalmarsden.nhs.uk/research/pages/clinical-trials.aspx

They have cancer trials going on

Clinical trials currently recruiting

But we have to have it pacifically for Mesothelioma

Then Linda sent me through the UK trails http://www.ukctg.nihr.ac.uk/search?query=keyword%3Amesothelioma+status%3Arecruiting&resultsfrom=1&resultsto=10&pagesize=10

Where I found the ADAMS trial which I wasnt suitable for http://www.ukctg.nihr.ac.uk/trialdetails/ISRCTN71601938

So I have been reading through and studying which can be used on 3 rd line Patient as my body has had so much treatment.

I had found this site this afternoon http://topdocumentaryfilms.com/burzynski-the-movie-cancer-is-serious-business/

and low and behold a Man asked if anyone knew of the documentary as it had been recommended to him so I was able to help share.

Burzynski is the story of a medical doctor and Ph.D biochemist named Dr. Stanislaw Burzynski who won the largest and possibly the most convoluted and intriguing legal battle against the Food an Drug Administration in American history.

His victorious battles with the United States government were centered on Dr. Burzynski’s belief in and commitment to his gene-targeted cancer medicines he discovered in the 1970′s called Antineoplastons, which have currently completed Phase II FDA-supervised clinical trials in 2009 and could begin the final phase of testing in 2011-barring the ability to raise the $25 million to fund the first one.

When Antineoplastons are approved, it will mark the first time in history a single scientist, not a pharmaceutical company, will hold the exclusive patent and distribution rights on a paradigm-shifting, life-saving medical breakthrough. Antineoplastons are responsible for curing some of the most incurable forms of terminal cancer. Various cancer survivors are presented in the film that chose his treatment instead of surgery, chemotherapy or radiation – with full disclosure of original medical records to support their diagnosis and recovery.

One form of cancer – diffuse, intrinsic, childhood brainstem glioma has never before been cured in any experimental clinical trial in the history of medicine. Antineoplastons hold the first cures in history – dozens of them. Burzynski takes the audience through the treacherous, yet victorious, 14-year journey both Dr. Burzynski and his patients have had to endure in order to obtain FDA-approved clinical trials of Antineoplastons.

However, what was revealed a few years after Dr. Burzynski won his freedom, helps to paint a more coherent picture regarding the true motivation of the U.S. government’s relentless prosecution of Stanislaw Burzysnki.

Why is it all such a fight -why cant we all share knowledge and work together, We patients watch and wait for the cure or at least good treatment, we havent got time to wait.

 

Im sorry its been very medical but thats my life  and has been for over 3 years now.

The sun has shone all day and we had a great walk as I needed to get out into the fresh air.

I sit in front of this computer to much but it is my lifeline to the outside world –it is full of so much knowledge and I seek it all out.

I spruced up my speech again but I will keep looking at it as I have not put in about trials and how hard we work at that.

So that’s another day flown by

Rays Blog http://mesoandme.wordpress.com/2012/10/09/tuesday-22/

Linda Wride writes a blog http://doingsomethingpositive.blogspot.co.uk/2012/10/pill-popping-cycle-1-day-2.html and here she describes all the medication we take when faced with Chemo.

It shocked me to see it recorded in such away as you just take what your given to the instructions your given.

It seems an age when I was on chemo as you have to forget it and just enjoy the 3 months of stable and pray you never have to go back on it, but of coarse you know you will.

I think Mesowarriors are the bravest people  I know-Bless them all. But also I honour the Carers as they bravely run around and take over running everything and being there when we need comforting, caring for and just listening.

 

 

 

 

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

Living with Mesothelioma My Diary -Disneyland coming to Kent WOW!!!

What a boring wet day so much rain —http://www.youtube.com/watch?v=n65SsZP1TaY

I know I wanted to have a rest after the weekend but not this much.

I have managed to write my speech though for November so Im glad that is out the way, I now have to time it and make sure I don’t rush it .

Exciting news tonight that they are trying to build Disney land in Kent right by Dartford crossing so baring planning permission it looks good for jobs for people as they build it and then when its open and up and running in 6 years.

Computer generated image of proposed entertainment resort

The site of what was once Europe’s largest cement works is to be turned into a giant, Hollywood-style theme park to rival Disneyland Paris.

The brownfield land in Kent, close to where the remains of the 250,000-year-old “Swanscombe Man” were found, could rival the

Olympic Park for the scale of its job creation and local regeneration

A £2bn entertainment resort which would aim to rival Disneyland Paris could be built in north Kent.

Developers have been granted a licence from Paramount Pictures to use its name on a resort on the Swanscombe Peninsula, near Dartford.

The scheme has been offered “support” by Dartford and Gravesham borough councils.

The site’s developer, London Resort Company Holdings, is now looking for further investment for the project.

It estimates the park, which would be based on a former cement works, would create up to 27,000 jobs.

The 900-acre brownfield site is next to Ebbsfleet International station, which is 17 minutes from London and two hours from Paris.

http://www.bbc.co.uk/news/uk-england-kent-19867695

I did take Louis for a little walk in the rain and now we have a very bored dog on our hands.

I cooked three chops

In walked Louis licking his lips ha ha !!

Please Mum hurry up !!

So Louis had a lovely chop but I poured sweet and sour sauce on ours.

So that’s the day gone and apart from a wonderful chemo tinnitus ear and an earache today Im fine.

I hope tomorrow is dryer.

ha ha !! Debbie has just put this photo on Face Book –he had a whale of a time and it was lovely to see him laughing with the girls xxx

Photo: Naughty ray you tricked me : )

http://mesoandme.wordpress.com/  Rays Blog