Mesothelioma Survivor -My Diary- Meridian News Tonight -My very short interview but its about a Vaccine so that’s Important

http://www.itv.com/meridian-east/  Ray video it so the quality isnt very good but at least I have something to keep http://www.youtube.com/user/ramondos70

Well at last we have a link but It wont stay on here as the news changes daily.

It showed me making a cup of tea for the cameraman.

I think I look like a scared rabbit

Richard did a good Interview

It was more about me making a drink and just a very small piece of my interview but then its not about me but about a vaccine that they have produced which is very important.

I have now been invited to give a talk to the scientist’s at Oxford which I have of coarse agreed to.

I said anything to raise awareness of Mesothelioma  Richard said -Absolutely…it’s very much under reported. It would be nice if you could meet Jason Lester one day as well…he’s such a great guy AND walked up Mt Kilimanjaro to help support this trial.

What a man and I will try and contact Jason.

So thats been the excitement of an otherwise very dull day as it has looked like rain all day and no it didnt rain.

We had a short walk with Louis because I have been working on the computer all day.

Skypeing,  phone calls, emailing, this is becoming a full time job raising awareness.

Im ready to go to London tomorrow for my results and I will make decisions when I know what Mr Nasty is getting up to, he hides inside my lung planning and plotting its like a chest! game ha ha !!!

Mesothelioma Survivor-My diary. A busy day, Paula Clinic for Ray today.

In my comment’s there is a lovely comment from Richard who works at The company that makes Trovax  He also has been interviewed for the same item on Meridian ITV and so as his interview was today it wont be shown until tomorrow.

TroVax® is a therapeutic vaccine that stimulates the immune system to destroy cancerous cells expressing the 5T4 tumour antigen which is present on most solid tumours.  The product is based on an attenuated modified vaccinia virus Ankara (MVA), engineered to deliver the 5T4 antigen.  Vaccinia viruses are commonly used as delivery systems for the development of antigen-specific vaccines.  MVA is the vaccinia strain of choice because of its excellent safety profile and its effectiveness in stimulating an immune response against ‘self’ antigens, such as 5T4.

http://www.oxfordbiomedica.co.uk/page.asp?pageid=35

This is all looking good and I have found a lovely new friend, he asked if I was interested in going to Oxford to give a talk as they are always interested in talking to the patient so of coarse I jumped at the offer.

So lets hope its on tomorrow at 6.30pm and 10.30pm I cant wait see it.

Today Ray had to go to the Diabetic eye clinic http://www.paulacarrdiabetestrust.co.uk/ they come round in a special adapted Van and park outside the Doctors.

Silly Digital camera--ray was just going in but by the time i took the photo he was gone

Mobile Unit Back of vehicle.

 

I walked the dog while Ray had the drops  put in.

Image of an Optometrist pointing at an eye testing letter chart

You should report to the Retinal Screener on the Mobile Van who will check your details and perform a vision test. Your pupils will then be dilated using eye drops.

Once your eyes are fully dilated and no longer reacting to light, a photograph will be taken of the back of your eye (the retina).

Image of a diagram of retina

The Retina
The retina is the part of the eye that acts like the film of a camera. When the photograph is taken you will experience a bright flash of light. This should not be uncomfortable. I went to meet Ray after taking Louis for a walk and when I got there other people that we knew were all sitting in the garden chairs and we all had a natter.Ray wore sun glasses as the light hurts the eyes and we came home.I caught up on the housework and felt good so we pulled all the furniture away from the walls in the Lounge and  I washed the  walls and skirting board and we  put the furniture back, dusted all the other rooms and hoovered.

Lunchtime then and a sit down before we then took Louis for another walk.

So that my day gone again.

Talked to Rod in Australia, facebook chatted my Grandson and then phoned my son so its been a busy evening.

Ray has had a bad day with these shingles, gosh will this never get better, he makes me laugh as we walks he holds the T shirt off his body it looks really funny.

Rod has told me I should be more sympathetic,  I’am really honest Rod xx

Mesothelioma Survivor-My Diary- My Interview with Meridien ITV News has been completed for the News programs Thursday tomorrow.

To day has been a good day as we were up early to tidy up and get breakfast out of the way for The Interview for Meridian ITV.

Took Louis for a quick walk and good job we did as the Cameraman arrived at 9.30am, so we opened the door to him and said hello while Ray took Louis down to the Motorhome as I said we dont want a dog barking in the back ground.

He was very apologetic, the Interviewer was off sick, so he was going to video and interview it all, that was OK by me.

He did a white test and set the camera up, then was soon ready for the off.

The question were easy to answer about the treatment I have had and what is available to me now, what was chemo like?  What would a Vaccine mean to me.

I made a couple of mistakes so we had to redo that part but he thought I was good and said I must have done this before. Well Im an expert and talking about Mesothelioma  if that’s what he meant.

Lights Camera !!! the interview begins


After all the interview was over he filmed me reading notes as a set up (as he called it) then asked me to make a cup of tea “Oh yes you want a cup of Tea” but he meant so he could film me playing housewife ha ha !!

I got the cups out and then the coffee and tea and placed that in the cups “Now pour the water out ” “I haven’t boiled the water” “Break” “Boil the water ” “Ok boiled” “Pour the water” this was great fun.

Poured the milk and the shooting was all done.

I chatted about how my Meso has come back and explained what happened in the beginning, The Fluid drain and the tumour seeding all over my chest wall. He was very interested and the said Oh! I have left the camera running all through that sorry. ha ha !! So he has lots of footage now.

Off he went as he had to Video a Military March in Gravesend  so that was it all over.

I will be glued to the news Thursday all day as its on at 1.30pm 6pm and 10.30pm but I don’t know how much will be televised.

We went straight out as the weather was lovely and at Tankerton slopes the Sea was blue and the skies were bluer although the clouds were bubbling up on the horizon, wonderful clouds that look like a steam train has just gone by.

One of the intriguing features of Tankerton’s beach is the shingle bank known as The Street. It used to be assumed this was the remains of a Roman road built on land that has since surrendered to the sea. However, a more credible suggestion is that it is all that remains of a medieval town called Graystone. Certainly, the shingle all the way along the beach contains fragments of tile and other bits of building debris.

The Street, the Clouds and the sea what more do we need

It was uncovered by the low tide and I don’t usually see it so it was a surprise to us.


We had a lovely walk right along to to the cafe where people were eating in the sun and then we walked back again to the car.

Shopping at Tesco then was the chore of the day and to get Ray’s painkillers where the Pharmacist said he didn’t think any cream would help it nothing would work and you just have to put up with it –how bad is that.

We met our lovely neighbour there, she has a bad back and is waiting for an operation, she really has been suffering with the pain and finds walking so hard.

Its such a shame as she was so active when she was 80 and this has been so spoiling her life. I wish her luck for the op and as her daughter said it will take a time for recovery but once she recovers it should be so much better.

Her Daughter has been over from South Africa (Goes back tonight) and she said I looked well and she has been reading my blog and we chatted about my condition and my London visit yesterday.

I sit here every night completing my diary and I don’t think  always of the people that read my words.

Its nice to know so many people are interested in my ramblings so I would like to say a thank you to those that do Im very pleased honest.

We had a lovely chat and then off we went to continue shopping.

When we got home and we had a lunch and Ray was sleepy so I went to my friends for a lovely chat and that was it Dinner was the next thing which means another day over.

It really has been a good day.

Mesothelioma Survivor-My Diary A day in London -My Scan has been done

Last night all the Meso Warriors lit a lamp or candle for the funeral Of our friend Peter in Australia,  we were off to bed it was Monday morning there.


Monday 18th July that was the date for my scan and so we had to rush around, walk the dog and settle him back indoors with all his biscuits and toys.

We got to the station early so was  able to get the 10.09am train but it was crowded as now the holiday season seem s to be in full swing here in Whitstable.

The train sped through the Kent countryside  which I love looking at but observed that there are a lot of isolated large house being built in lots of different locations away from the road hmmm my detective mind works overtime ha ha !!! 2+2= 5 ha ha !!!

We pulled into London  and I dived off to pay 30p for a pee !! but I just cant go on the train it really doesn’t appeal to me shutting my self in a round box as I have a fear of the door not opening again.

Off we traveled on the Underground to Mansion House and walked to the hospital, we really are getting to know the route very now.

We found the entrance to King George V building and was happy so we went to the restaurant to have a beef casserole and rice with fresh vegetables which I couldn’t eat all of it as I haven’t eaten meat for such a long time that I was full up in no time.

We were eating with all the doctors and nurses who were all deep in conversation about what they had done at the weekend or what they had been doing in their departments –real interesting chat.

I said I didn’t mind going to the scanning department early  but it was 2 hours early and yet the receptionist was pleased to see us and after booking me in told us where to sit.

I was amazed as the department was huge and the decor is so clean, the lightening, and picture’s on the wall , all very nice .

We chatted to people waiting and I’m really amazed, everyone has no qualms about talking about Cancer, yes they said the whole word not “the big C” They ask where have you got it what treatment etc etc. How times have changed, but how relaxing.

Then I was called in 1 hour early, how great was that, as Im usually waiting for ever more in the Kent & Canterbury. No going into dressing gowns.

To receive the contrast injection, an IV is inserted into your arm just prior to the scan,  the  male Nurse was very gentle and got my vein and with me screwing my face up, the job was done and tapes around, I was now ready to pass into the Scanner room. Here another lady chatted away to me about her husbands bowel cancer and how it has spread through his body and yet his chemo has halted it for awhile. These poor carer’s what they have to go through, so much worry so many visits to the hospital and waiting in waiting rooms, it invades their lives so much.

I was soon called to the scanner machine where a really friendly operator laid me down on the scanner bench and made sure I was comfortable, I traveled up to the Polo and held my breath and a photo was taken The operator came in and fitted me up to the contrast machine and went out I then traveled up to the polo and I had the contrast automatically  in my veins and I could feel the hot feeling travel through my arm into my head and the lips tasted funny where it traveled on down in my chest then through onto my legs.

The machine told me to breath in and I traveled out of the Polo, I was holding my breath for ever it seemed and was so pleased when the machine said breath out.

That done I was helped up of the bench and asked to wait out side for 15 mins just to make sure I had no side affects which I did and then had the IV removed and told I can go home, the time was still only 2.10 so almost an hour earlier than the 3pm appointment time.

I was very impressed with the whole department, the way its run, and the size of the department.

We walked back to Mansion House where we pass by Gorden Ramsy’s restaurant, I will treat Ray in there when I can go on the Trial to Celebrate.

On the underground there were so many different people to watch, a man sitting opposite me had pin stripe trousers on, dirty shirt and a short mac jacket carrying a file case -Ray said he was a business man and I said he was a cheesy detective !!

There are people from all over the world sitting in the carriage with us, gays straights and the cooked ha ha !! all in the pot I love it and the atmosphere.

We were soon back at Victoria and on a train home speeding back and once again sitting with real characters it has been very amusing today.

Home and the dog went wild with joy as he greeted us home bless!  We have to do it all again Friday as I get the results.

I had a phone call from Meridian ITV to say no more messing the interview is tomorrow for Wednesday News. They want to ask me what treatments are available to us so it should run ok as I have spent 2 years studying the subject.

Mesothelioma Survivor-My diary. Celebrating with my Grandson so baked cakes ha ha !!

It was a gorgeous when we woke up and the sun beamed but gradual heavy clouds came over and all today the rain has been in very heavy showers.

The dog had got me up at 3pm and wanted to go to the garden to eat grass so I gave him half a rennie and he came in and settled down on his back legs in the air and snored away. Bless

I did some more tidying up and throwing away of old bills and put hospital letters in order and placed into a file. So many appointments so many scans, that is all my life seems to consisit of and yet I was reading an article of mesothelioma treatments which has confirmed that the best candidates for aggressive therapy, including radical surgery, are those patients who are in overall good physical condition and have the epithelial subtype of mesothelioma. (Well I fitted that bill when I started this journey.)

The average age of the patients was 55 and more than half of them (55%) had Stage I or II mesothelioma that was confined to the left side of the chest. The epithelial form was the most common type of mesothelioma in the study, effecting 62.5% of patients. ( once again that describes me but I was 68)

The average survival of the mesothelioma patients in the study was 10.5 months (I was given 6 months -2 years at the most as I have stage 3) But Im now 2years 1 month as I was diagnosed 4th June 2009) So Im now out in front with other Meso Warriors trying to prove to them we will expand their Predictions.

http://www.survivingmesothelioma.com/news/view.asp?ID=001122

One thing I had given up on was seeing my Grandson leave Collage and find employment– wrong!!!

Daniel

He left Collage last week at 20years old and has  found a job which he has  to finalize the start date tomorrow in a chain of Hotels on the Conference side of the Hotel.

Im so proud of him and we chatted away all Saturday evening.

http://www.youtube.com/watch?v=ft0C-yHSotY He and his mates made this film where Dan sounds like David Attenborough they have  had a great time together and now sadly they have all gone out into the world.  I wish them all luck in what ever they do.

So he made my day yesterday as we passed another mile stone that my nasty hasn’t stopped me seeing.

A good reason to bake cakes this afternoon –well it was a good excuse.

 Just out of the oven



With there Icing  on –so many calories yum yum.

I wanted to make more but I do eat to many and so does Ray so a few each day is the best way to go.

It just went on showering so we looked for a break in the rain and went for a nice walk around. Look what we saw –thank goodness we always carry my camera with us

All old Gold Wings I was in heaven and waved to them although they were all young riders they always know what it means to us older rider’s–oh those were the days.

We had dinner of steak, roast tomatoes and jacket potato and a cake for sweet.

We have started to make a video of my story to raise more Awareness of Asbestos, but that will take a lot of planning and a lot of work which we are excited about. Something we can do together is great.

Mesothelioma Survivor -My Diary A wet wet day, An article on Chemical Poisoning what is it doing to our bodies, Fords and Asbestos

Oh dear today has been such a wet wet day.

We have stayed in the dry this morning and worked on the computers but also carried on sorting out the den to make it look tidy as we have so much paperwork to sort through.

We also planned the journey Monday as we didn’t know just where King George V hospital was. It seems St Barts is made up of other hospitals and really covers a larger area than we knew.

It makes our Canterbury and Margate hospital seem like Cottage hospital’s.

It has The Queen Elizabeth Wing and King George V Wing infact 23 different buildings. We have worked out where I have to go on Google earth so Im happy.

We did take Louis for a walk up to the Chemist for Rays Prescription but they were closed so we walked up to the alley that goes into the field by Seasalter old church.

It was raining very hard but also very pleasant as it wasn’t cold so in actual fact we enjoyed the walk.

When we got back I sorted my washing in the dryer in the shed and tided things that had blown around in the wind and ray took this sneaky photo.

If he isn’t careful I will rub his spots ha ha !! he has taken so many pain killers today but at least he has had an hour or two of pain free but then I see him holding his T shirt off of his body.

I did do a massive pile of ironing and everything is back in the cupboards again.

We have been in doors all afternoon but the sun is now trying to peep through so it might be a pleasant eveing –Might!!!

I suppose we will get the DVD’s out as we have some catching up to do with our film’s.

Medical Bit now–

I have found this article today from google and at last someone is writing sense —

If you are alive in 2011, no matter what your age, you have been part of one of the largest and worst experiments in history. No matter how carefully you eat or drink or watch your exposure to toxins, your body has chemicals in it that do not belong there and have the potential to make you ill, even fatally ill.

You didn’t give anyone permission to experiment on you, it just happened to you. Chemicals have been spewing from smokestacks, sprayed on crops, dumped in your water, incorporated into your food, clothing and shelter. You’ve been exposed to large amounts mercury if you eat fish, you’ve breathed in asbestos from fabrics and building materials. You’ve ingested lead from paint. You have consumedBisphenol-a since the 1950’s or since you were a baby if you were born later. You probably havePCB’s in the tissues of your body. If you eat meat, you are eating antibiotics meant for livestock. This is a particularly shoddy experiment since there is no control group, no hypothesis and the experimenters ignore the outcomes.

In spite of the fact that we have many laws on the books to protect us and federal and state regulators to enforce the laws, the sheer scale of pollution has overwhelmed us. We all pay the price for this with our health and our very lives.

For generations, environmentalists, health advocates and people with common sense have been fighting corporate interests to keep toxins out of our environment. Have we been successful? Well, we have managed to ban and regulate some of the worst poisons. In some cases we have only shifted the manufacturing and distribution channels off shore so that we primarily poison other people with those particular toxins. However, it’s difficult to demonstrate any real big picture success against the tsunami of chemicals that we swim in every day.

Toxic pollution has no international boundaries. In China, a group of students shocked by the headlines about ” toxic milk, tainted pork and beef and reused gutter oil” undertook a project to map toxic hot spots for food production. In Canada, environmentalists fight pollution in Lake Ontario and the massive threat of tar sands extraction fouling ecosystems. In Japan, radioactive particles from the massive failure of the Fukushima nuclear plants are being found in food and water. All over the United States, we transport out kids to school in diesel buses that spew carcinogens out of their tailpipes.

While we have seen this rapid acceleration of ever more toxic substances into our environment, we have experienced a corresponding increase in disease. Cancer rates continue to increase, although treatments have reduced the number of deaths. According to the World Health Organization’s2008 Cancer Report:

The rapid increase in the cancer burden represents a real crisis for public health and health systems worldwide. A major issue for many countries, even among high-resource countries, will be how to find sufficient funds to treat all cancer patients effectively and provide palliative, supportive and terminal care for the large numbers of patients, and their relatives, who will be diagnosed in the coming years.

The WHO warns of a possible 50% increase in cases of Cancer by 2020.

The Scientific American suggests that soaring rates of autism are linked to our constant exposure to toxics. Again, we pay an enormous emotional, practical and financial price to deal with the increase in this disease.

Links correlating many other illnesses with toxic and radioactive exposure are many and powerful. Yet we continue to operate in a manner that all but ignores this fact. It is not from stupidity. We are smart enough as a species to understand the connection. It is more likely from a combination of greed, laziness and apathy that we continue to allow this to happen.

This is not a problem that can be solved in a year. No governmental body can pass a regulation or set of regulations that will fix this quickly. The hard work of reducing exposure to toxins from our environment will occur over decades and centuries. It will take a massive shift in our thinking about the rights and responsibilities of corporations and the role of our governments, local, national and global, in protecting the commons and prioritizing human health over things like the cost of production.

The fact that this problem is so massive is no excuse to give up. It is a reason to get active. Progress in reigning in the power of corporations to poison the entire population of the world will bring with it many collateral benefits. It’s an enormous cultural shift and requires dis-empowering the most powerful entities in the world. But if we don’t wish our descendants to live in a world riddled by disease, genetic damage and drastically shortened life spans, we need to begin now. As we fight the important battle against climate change, we must not lose sight of the urgent need to support organizations that fight the battles against toxic exposure and unbridled corporate power.

And another piece about  Fords and Asbestos which has shocked me as so many people worked at Fords through the years and the Asbestos must have been in the production line.
Ford Gets First Order 108 Years Ago Today: Legacy of Asbestos in Motor Vehicles Begins
July 15th, 2011On July 15th, 1903, Ford Motor Company received its first order from a Dentist in Chicago. This began a long, unfortunate legacy of asbestos use in brake pads. For decades, mechanics and Ford assembly line workers were exposed to asbestos from working with brake pads. Asbestos is still used in some car parts today.

Especially when working on older vehicles, mechanics still face a risk of asbestos exposure. Although, since the late 1970’s, the dangers of asbestos have been greatly publicized, and now mechanics can better protect themselves against exposure. When production of automobiles started, the hazardous of asbestos use were not well-known. Asbestos corporations actively hid the true risks of working with asbestos from the general public to maintain high profits.

Although this day signifies the anniversary of a great American achievement, it also brings to mind the generations of mechanics who came in daily contact with this horrible substance – many died as a result.

Mechanics today should see their doctors frequently to check for symptoms ofasbestos-related diseases. If diagnosed early, an asbestos-related disease can be much more manageable than one diagnosed in the late stages. Anyone diagnosed with an asbestos-related disease should seek legal counsel immediately.

 


Mesothelioma Survivor -My diary- Is shingles really this bad? New Bookcase at last.

Poor Ray he thrashed around all night moaning in his sleep with pain, I never knew shingles could be that bad.

I got up and showered and tidied the rooms as the TV company were coming at 10am so I got out with Louis and got his walk in but when ray got up he was really in pain.

I made him phone for an appointment which was made for 3pm as the TV man was coming and I wanted Ray there.–Wrong the interviewer phoned at 10am and said he couldnt get camera man!!! again!!

He asked when could I do it as it is going out on Wednesday in the news and interviewing me has become very important.

So I have made it for Tuesday and he better come. We cant keep getting dressed up so early and do the housework.

So we went out and treated ourselves to a new bookcase for the den.

We walked Louis and played ball with him but put his lead on when a man opened his boot and got out 2 of the biggest dogs I have ever seen.

they were pulling and really did look very fierce, I just wasnt going to take any chances there.

We drove home and bought the book case boxes in and spent a time fitting them together, all the peaces were there –amazing.

I waited for Ray to come back from the Docs and he had more pain killers to take as the Doctor says he is about half way through but as he has had such bad pain he may have damage to pneuropathic nerves

Neuropathic pain refers to pain that

stems from an injury to a single

nerve or to several nerves in the body.

You actually might feel the pain in one
or more parts of the body. Neuropathic
pain can occur at any age, but affects
older people more frequently than
younger people. Damage to the nerves
can change a person’s sense of touch and
can limit arm and leg movement.
Although there are several distinct types
of neuropathic pain, the three most
common are:
1. postherpetic neuralgia
2. peripheral neuropathy, including
diabetic neuropathy
3. complex regional pain syndrome
(CRPS)

I hope all this doesnt start his Asbestos damage turning as we do not understand
 yet why the scaring changes and the thickenings turn into tumour's
One in the house with meso is bad enough.
Well I told Ray to have a coffee and I would load all my books back 
so told him to have a sleep.I tidied up and sorted through my books
 and threw away, it was good to have a clear out The time
 flew by so I then cooked dinner of baked potato's salad 
and gammon steak and we were shattered.
The day has been lovely and sunny but tomorrow they 
forecast lots of rain, where is our summer?

Ps i have been looking it up on the internet and this describes Ray as he cant bear his T shirt on

The burning waves of pain, loss of sleep, and interference with even basic life activities can cause serious depression.”

“In patients with immune deficiency, the rash can be much more extensive than usual and the illness can be complicated by pneumonia.”

· National Institute on Aging:

“For some people, PHN is the longest lasting and worst part of shingles. The pain can make some people feel weak and unable to do things they usually enjoy. Those who have had PHN say the pain is sharp, throbbing, or stabbing. Their skin is so sensitive they can’t bear to wear even soft, light clothing.”

“The older you are when you get shingles, the greater your chance of developing PHN. This pain can last for weeks, months, or even years.”