My Diary Whitstable is preparing for Xmas

Medically there isnt much going on in my life, pains come and go in my Chest and my arms and hands ache, more now the colder weather is upon us.

I have a scan again on the 10th November so the build up of fear is back and I keep saying that everything will be OK –But you never know and my mind must also be on the fact things might go wrong again.

I have had an Interview for Yours magazine so I have to wait and see how this  is put together.

Ray said I gabbled along but Kate seems to be thrilled by my story and is carrying out a lot of Research now on the subject of Asbestos which is great.

Tuesday Im going to a meeting of the Lung Cancer and Mesothelioma Support Group at The Wisdom Hospice Day Centre Rochester.

The Guest Speakers are Sarah Lavender and Aileen McCartney so it will be the first time I have been to a Hospice.

I have very mixed thoughts and hope I learn something from this visit.

I will report about on this when I get back Tuesday.

On face book a man has said how he hasnt taken up the offer of Chemo

  • Everyone seems to have a different experience.I was offered Chemo but it wouldn’t extend my life just reduce symptoms
  • I said
  • Oh Peter you should have had the Chemo as they said the same to me but I had Disease stable for 2 scans then a little shrinkage and just waiting for another scan in November to see if there is more shrinkage. 
  • Then another person answered
  • Hi Peter – I was told the same re chemo – told it was palliative but didn’t think I was at that stage so refused. Anyhow a friend – 73 year guy from Inverell has had about 3 lots of ordinary chemo and is 3 years after diagnosis with meso stabilized.

My heart cries out for these people as I know Chemo is so daunting but they should try everything. You cant sit back and not do anything and I find they really arent explained eveything very clearly.

Thank goodness we have Face Book where we can talk and give all the help that is needed when you get into this situation.

Well as my heading says Whitstable is getting ready for Xmas so on Thursday December the 2nd Our Local Shops will be launching Christmas shopping  with a Victorian theme which all sounds inviting.

Coastal Towns manager Chris West is arranging street entertainments and other attractions between 5pm and 7pm and is hoping as many businesses as possible will keep their doors open.

Harbour Street, High Street and Oxford Street will be included in the fun, with a trail for shoppers to follow, a window spotting competition, and a free prize draw to win £100 of vouchers to spend in Whitstable shops.

There will be children’s shows in St Mary’s hall, Oxford Street (the Umbrella Centre) and street music.

Ther will be lots of Surprise attractions and in Oxford Street traders will also switch on Christmas lights on Saturday 4th December beetween 5 and 8pm with more music and entertainment. this is something to look forward to.

But I have lots to do in the meantime.

As a foot note from me Ray. Just my thoughts here. Regarding chemo. If your the patient  I appreciate its your body your life. But  there are other conciderations here. The people you leave behind you. Spouse wife husband partner. They have got to bear the pain after you leave. IMHO I think it short sighted to refuse something you havent tried that may prolong or help your quality of life. During your curent suffering spare a thought for those that love you . You only get one shot . As I said its my opinion, Ray the one being left behind. 

Latest news about the lungs


The human lungs can “taste” bitter substances in the air, according to a study that could lead to new types of drugs designed to make it easier for asthma sufferers to breathe.

It is the first time that taste receptors, normally found on the tongue, have been discovered in the involuntary smooth muscle that controls the flow of air into the bronchi, the narrow airways of the lungs.

Scientists said the taste receptors are identical to those designed to detect the presence of bitter compounds in the mouth but, unlike the taste buds on the tongue, the receptors in the lungs do not send nerve impulses to the brain.

The discovery, published in the journal Nature Medicine, was so surprising that the researchers who made it initially thought they had made a mistake. They also discovered that, rather than narrow the tubes of the lungs to protect them against bitter, poisonous gases, stimulating the receptors actually widened the airways.

“Nobody expected that taste receptors, considered to be for the tongue, would be found on the smooth muscle of the bronchi,” said Professor Stephen Liggett of the University of Maryland Medical Centre in Baltimore. “When we [stimulated] these cells, we figured that they would constrict the muscle, signaling a person to leave a toxic environment. Instead, they open the airways better than any known drug for treating asthma.”

Many poisons made by plants are bitter, so the scientists thought that the receptors must play a role in warning the lungs of a potentially toxic environment. “I initially thought the bitter-tasting receptors in the lungs would prompt a ‘fight or flight’ response to a noxious inhalant, causing chest tightness and coughing so you leave a toxic environment, but that’s not what we found,” Professor Liggett said.

“It turns out that the bitter compounds worked the opposite way. They opened the airway more profoundly than any known drug that we have for treatment of asthma or chronic obstructive pulmonary disease,” he said.

“New drugs to treat asthma, emphysema or chronic bronchitis are needed. This could replace or enhance what is now in use, and represents a completely new approach.”

There is no possibility that the lungs could be subconsciously used to “taste” air, Professor Liggett said. “In the tongue, there is a neural pathway from the taste bud to the brain. There is no such pathway in the lungs. The receptors are on the airway smooth muscle, and signal to the interior of the cell to cause it to relax,” he said.

One explanation for their presence is that the taste receptors detect bacterial infections which secrete bitter substances, thereby ensuring that the vital airways are kept open.

My Diary another great weekend away.

It has been a busy time as each week something new happens. Many emails to answer from people that need help with Mesothelioma advice as their loved one’s are suffering.

Today I have had my 10year renewal for my Driving License and you have to put any medical problems.

There is no Mesothelioma listed only Lung Cancer. When are we going to get recognized properly??

I went to Tesco and had my photo taken, thats gone up to £5.00 and we have had to send £20.00 with the application. Everything  gets dearer doesn’t it, I wouldnt mind but next August Im 70 so I will have to have another new License so will have to pay this all over again. DOH!!!

Well I did have a great weekend at the Kent MCC AGM held at Lenham, we met all our old friends there and it was just wonderful and so friendly as we kissed hello and everyone was so pleased to see me and kept saying I looked so well.

We got up Saturday and went to the School Hall for the AGM which went off with no hic up’s so we were soon able to have a nice walk to the village with the dog, it is a pretty village.

Lenham Village

We went back to the Motorhome and got ready for the evenings Entertainment in the hall and had a brilliant time as the band was very good and played all the songs we knew so well so much so my throat was aching next day from all the singing.

Ray let his hair down and he really danced the night away it was lovely to see him so happy.

Ray has finished with running the MCC web site so that he can concentrate on my site where we can gather as much info in one place as we can.

He runs other web sites so he has plenty to keep him busy.

I have a Interview with Yours Magazine on Wednesday, I’m making some notes to make sure I cover the Information I wish to discuss.

I will be very pleased that Mesothelioma and Asbestos is being made aware of as so many people have not heard of my Cancer.

Asbestos has been found in gardens on the site of a former textile mill in a West Yorkshire village.


Asbestos has been found in gardens on the site of a former textile mill in a West Yorkshire village.

Tests have shown that four out of 11 gardens on Forest Bank and Springfield Avenue in Gildersome, near Leeds, have the problem.

Soil from the streets’ remaining 49 gardens will now be tested. The Environment Agency has given Leeds City Council £50,000 to carry out the work.

The Health Protection Agency said the risk to residents was low.

The houses were built on the site of the former Springfield Mill in the 1970s and 1980s.

‘Very worrying’

Max Rathmell, the council’s contaminated land manager, said: “Until we have more information we can only have two theories.

“One is that it was part of the mill itself, because many textile mills did actually weave asbestos into various fabrics that they produced.

“The second sources would be that potentially it was introduced on to the site in topsoil and subsoil that was brought in to make the gardens.”

Residents on the two streets have been sent letters informing them of the find and the planned soil sampling work.

Annette Armitage, who has lived in Forest Bank for 18 months, said the letter was very worrying.

She said she was concerned as her young granddaughter often played in the garden.

“It doesn’t seem right really, just a letter,” she said.

“You think somebody would come visit us to tell you, to come speak to you about it.”

Dr Mike Gent, from the Health Protection Agency, said: “The risks appear at the moment to be low.

“Asbestos really affects people when you breathe it in and therefore if it’s in the soil then there’s less risk of people actually being exposed to this at all.”

MY diary– My Flu jab

On Saturday Ray and I went to the GP Surgery to have the Jab and there were so many patients– and it was packed out.

The Nurses were working very fast, that we soon got called in to roll up our sleeve and receive the jab.

That was that for another year.

Ray and I at the country and western show

Off we went to do some shopping and then had a great time walking Louis and had Gammon Steak for dinner and settled down to watch X factor on the Telly, went to bed and watch a film until I went to sleep.

Woke up with a sore arm and then run to the bathroom to be sick.

Stayed in bed while Ray did the housework and take the dog out as I slept on.

I did start to feel better but then slept all afternoon.

Tonight I feel better –a lot better so can only think that putting two vaccines together has hit my Immune System.

They have given us the Flu and Swine Flu together this year.

Oh well I do feel OK so that’s it for another year.

This week is going to be exciting as I’m talking to the  Frances McKay, Macmillan Lung/Mesothelioma Clinical Nurse Specialist, Medway Maritime Hospital as she has asked me to help set up the Kent Group.

At the moment I don’t know what that will entail but im about to find out.

A very Interesting piece in the Mail

Cancer is a man-made disease, fuelled by the excesses of modern life, study of ancient remains from fossils to mummies has concluded.

A review of Egyptian mummies, fossil records dating back to dinosaurs and classical literature found tumours to be extremely rare until recent times, when factors from pollution to poor diet made life more toxic.

They discovered that the disease rate has risen dramatically since the Industrial Revolution, in particular childhood cancer – proving that the rise is not simply due to people living longer.

They believe that a better understanding of the origins of cancer could lead to new treatments for the disease which claims more than 150,000 lives a year in the UK alone.

My diary today Great news

I have received a letter from the House of Commons today and Julien Brazier has sent a reply to my Email asking for help.

His reply is:-

Dear Mrs Nye

Thank you for your email of the 8th October about Proffessor Vogl’s work on mesothelioma-I was sorry to learn that you suffer from this yourself and can appreciate that you are very keen to see trial’s of Professor Vogl’s experimental treatment established in the UK.

I have, as you asked taken the matter up with the Health minister, asking for his comments on the matter and I shall let you know as soon as I receive a response.

In the meantime, you will be pleased to learn that the Department of Health has asked the National Cancer Research Institute to carry out a review of research in mesothelioma and other asbestos-related diseases.

The outcome of the review will inform the future strategies and work of the Institute’s partner funders, and help develop the potential to build research capacity and increase research investment in asbestos related diseases.

The review is due to report shortly and I look forward to reading it

J Brazier

My diary –I have learnt something today

What a great rescue in Chili–all 33 miners out alive and well. Brilliant!!!

On Facebook a woman wrote

Hi all, my name is Melanie, and my dad has recently been diagnosed with Meso. I was wondering if anyone here has any knowledge of ‘multi focal motor neuropathy’ which is something my dad also has. It is apparently a very rare condition, but just wondered if anyone knew about it and it’s effect in relation to the Meso. Currently dad has been offered no treatment at all, as they say he is not strong enough to cope with anything. I am just really angry with the whole thing, as the medical profession seem to have completely written him off and all they are interested in is helping with pain relief, surely there’s more that can be done! He is only 68 and should have years of life ahead of him.

 And one answer was:-

Kevin suffered with nerve damage as well it affected his left hand and his right leg , they did 3 lots of radiotherapy to try to push the tumour back away from his spine which was affecting him x   

And yet..they keep saying they don’t know why I suffer with my hands and feet ..They do say there are only 3 of us at K&CC hospital with meso it really still that rare down here ..
Is it because they didn’t have Industry as fishing was… the main occupation here in Whitstable.

This is the first I have known any body with my symptoms and as you know I have always said my arms and hands are twisted and my feet are numb so at last i have an answer that I have always known –the Tumour is laying on nerves.

I do accept that it is where my tumour is lieing that it is damaging my nerves that explains so much.

I will tell my Oncologist that others have nerve damage and see what she says.