A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –Bank Holiday I Actually Chilled Right Out

We actually got away for the Bank holiday in the Motorhome.


 

 

 

 

 

 

No need to pack any food as we were going to Quiet Park and they have a lovely food barn with fresh food. Potato’s and carrots straight out of the earth wonderful Ice cream made local with cheese. Pots of home made jam it was a real pleasure stopping off and stocking up.

Moving on then Ray drove onto the field where we were parked up all weekend.

The field was packed with Caravans and Motorhomes.

We were with the East Kent DA  Charity meet With Stewards Ray and Marilyn and Malcolm and Sylvia who welcomed us warmly and soon settled in and got the camping chairs out as the sun was beaming down

Had a good walk with Louis up to the tower and around the field.


 

 

 

 

 

Chilling right out and it was just great.

Next morning we watched the children play all day with water pistols. Not a phone in sight just good old-fashioned playing together. Bought a good book about Liverpool Au Revoir Liverpool.Boot fair

Sunday at 11am right by the side of our M/H so didn’t have far to go, the money raised was for charity the Kent Air Ambulance.

Washed the M/H as well inside and out Louis has had a great day as well lots of dogs to watch and play with. He was excellent and our friends noticed the difference in him.

Saturday night, well Sunday Morning really a huge bang and the skies lit up. Watching the storm through a Heike is a great experience.

I have found some footage on Face Book Enjoying the thunderstorm tonight!

At last we did get to sleep and Monday morning the rain soon dried up again as we walked Louis around.

A silly thing did happen as I was cooking. There was a weird shhhing noise and I realise the water pump was running. water was gushing into the oven and turning to steam.

We rushed about turning the pump off and then had to dry the bottom of the oven out. Crazy.

So we have to put the M/H in for repairs to a water pipe. Why it has happened is a puzzle that wont be solved until it is looked at, Ray has taken the sink out but the pipes run off through a hole and behind the oven. Being Gas we didn’t dare have a look further.

So soon had to pack up and come back home where the washing is done and packed away as we are looking forward to doing it all again.

I have had to spend the morning writing speeches to cover meetings in  the next few weeks.

The next two speeches have  Asbestos details to it rather than Mesothelioma.  Face fitting of masks and the dangers of the workers who today are working with the Asbestos.

 

 

 

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma – The Confirm Trial has so much TV Coverage So much hope now for #Asbestos Patients

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This is the official video of the BBC News coverage for the Confirm Trial that certainly hit the headlines with a bang. I have never known anything like that as the excitement was so high all over the weekend. It has also bought so many new Patients to seek me out and I have added them into the Mesowarrior groups on Face Book and give them so much hope, That’s what we are about.

I had a lovely email on Monday

I would like to say a massive thank you to everyone who helped make this happen. A particular thank you to Mavis for allowing us to tell her story and to Gareth for doing all the interviews on Friday. A personal thank you to Andy for helping manage the media activity while I was out of the office on Thursday and Friday.

BBC South Today – Short packages on breakfast and lunchtime and full package on evening programme.

BBC Radio Solent – Pre recorded interview with Gareth on news bulletins throughout the day and live interview on Drivetime show

BBC South East – mentions in breakfast, lunchtime and evening programmes

BBC Radio Kent – Live interview with Gareth on Breakfast show and then mentions throughout the day on news bulletins

BBC Radio Jersey – mentions on news bulletins

ITV Meridian – mentioned on lunchtime programme

Heart Radio – mentions on news bulletins

Breeze Radio – mentions on news bulletins

The Sun

Daily Express http://www.express.co.uk/life-style/health/806849/asbestos-cancer-cure-symptoms-mesothelioma

Leicester Mercury

The Daily Echo

CRUK  are  setting up a trial management group which will be a team of people who are involved in making decisions about the running of the trial. and wondered if I would like to take part as a patient representative. We will meet every couple of months this really sounds interesting.

Today one of the Mesowarriors has just had her Dad talk to his Oncologist who is now looking at setting up the trial. That is great news if we can help to have as many Oncologists happy to set the trial up.

It has spurred me on to make my Foundation work and raise funding for Research we are all set up for a Media Launch. One Board Meeting and that will tie up loose ends.

field_pe

The weather has been sunny and warm so we have been doing the garden. Defrosted the freezers in the shed. Funny how you think you are running down in food stock and when you tidy up you realise you have loads of food. No wonder we waste so much.

I have also been writing speeches as my next two are to the Asbestos Industry which is going to be interesting.

It is hard when everyone knows my story but I will talk about the risk of Asbestos as so many think it wont happen to them and we know it can.

I have a Video to make in the Centre of Journalism University of Kent. We are coming up to Mesothelioma Action Day and so many have asked me to talk. I can’t be in so many places at once but I can make video’s, Thank goodness for todays Technology.

I will be at the JUAC Asbestos in Schools Conference in Birmingham and then travel onto Derby to the UKATA AGM. So much to look forward to.

The lady at Whitstable Station loves asking where we are going and what we are doing  I just say I’m not in charge of my life I’m being carried along and enjoying every moment.

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –A very sad day as I say goodnight to my little friend Nika from Israel

  1. I’m heart-broken reading this we tried so hard to find her treatment but this disease will not listen. I loved being on the Turkish Telly with her we had a lot of laughs – Good night my little friend I will always remember you

    Image may contain: one or more people and cat

     

    1. Here Friend wrote on Face Book –Bad night, friends.
      Bad, because I just found out yesterday that Nika Zaretsky, a little friend from the real world in Israel and from my Facebook, gone into the next life last week. It happened in England, after the last hope of saving her life, an experimental study an innovative hoping to cure lung cancer, did not succeed.
      We have been texting a lot lately, and then last week whats stopped. One Gray line only for 7 days, not suitable for nice too hard days between treatments love to write and catch up. I had a bad feeling and unfortunately she has come to fruition.

      Cleaned made aliyah as a teenager, and living here when her family abroad, while she was finishing up a master’s in management board-certified as an architect. Haven’t really allowed her to have a career, a spouse left when she was discovered and she wasn’t enough to get married or have kids. But in all this suffering world of years of dealing,

      She did find the time to volunteer to help kids with cancer center oranit of “Ezer mitzion”. also, she wasn’t really alone here. Were her friends, so am I. She was independent, opens after a little fixer-Upper, and mostly a huge heart and soul who understood well the special condition, fought to the end but also knew to pack your life.

      Acetate Desert Here Ronnie Cuban, who performed the amazing film “life is too precious it starred nika:” cleaned up. A, beautiful, innocent transit, the goodwill, cleaned her conquered the heart of so many viewers. She’s all alone here in the land, fighting alone all day and i wish her to wrap it up. We know better “

      And Here’s the original movie where it shows up multiple times. Around the 20:30 minute movie. There’s a couple of minutes of the most exciting wmẕmrrwt with nika.

    I had blogged about this —

    I had to get ready for a Television interview for Israel TV. It has come about because I helped a young lady when she contacted me for information of my drug thinking she would have to come to the Uk or go to USA but I gave the address of MSD in Israel.At 35 Nika had had the same chemos as myself and was so worried. So I gave her all our Doctors that would help and all the info I could on trials in the hope she would find something.

    Im thrilled to find out that the MK3475/158 that Warriors have got here started at the same time as Israel and Nika has got on it. So we chatted for the cameras  just talking about our journeys but more about Keytruda and how we felt on the trials.

    The main thing they wanted to explain and to show Just how critical it is to get  people on this treatment if they do not have money to pay for it.  The same problem we have with trials around the world. If your can’t get on a trial you have to pay for the drug.

    isreal

    A very weird experience with no reporter or interview and the difficulty of different cultures and the skype kept saying not a strong signal. My computer even crashed at one point. I thought I was going to panic. then Louis kept coming and bashing me on the legs for chews the cameraman couldn’t get out of the shot it got funnier.

    Anyway its a take and I await what happens next apparently not being shown in Israel until June

    My little friend had Peritoneal and I got her here to St Barts but it was all to late and I knew that but it is so hard to tell someone to stop treatment especial when she is on 35

    One of my  messages from her ·

    Dear Mavis, Totally forgot to wish you happy Easter and Passover To tell you about meeting with Dr Peter. He is very nice person, but he was not optimistic about my situation. I was long time in the hospital, now I am in hospice. I feel not good. I should stop taking trial drugs as i was too weak and it was killing me. The doctors and nurses in hospice are amazing. They are trying to find me a painkillers, because as they explain, i am very sensitive to the drugs. I tried morphine, codeine, methadone. By now the best working for me was a type of codeine. They put permanent drainage as fluid is accumulating very fast in my tummy. I talked about chemo in peritoneal, but it was explained that is not suitable in my situation. I am getting weak. Sorry for telling you that news. If you have any advice please write to me. I really appreciate what you are doing and you are my hope and example. Hugs
    She was always seeking every trial she would flit like a butterfly as she was always in panic.
    She had her family around her and her Mother has been bay her side all the time.
     
    Good night my dearest friend I love you so much and my heart is broken The sun is shinning but I have a dark cloud over me. RIP you are out of pain
     
    فرشته کوچک شما بال خود را به طوری پرواز رایگان در باد من شما را دوست دارم خیلی خیلی

    And Here’s the original movie where it shows up multiple times. Around the 20:30 minute movie. There’s a couple of minutes of the most exciting wmẕmrrwt with nika. This is the movie we made together well they didnt use much of me x

    http://www.mako.co.il/tv-ilana_dayan/2016/Article-22dabfd696e5551006.htm&Partner=facebook_share

Little angel you have your wings so fly free in the wind I love you xx

angel 1

dragon fly candle

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos:- The Confirm Trial Has Been Launched Today

It has been a weird day today as yesterday we had a phone call to ask if the BBC could interview me at 7.30am on BBC South radio.

The confirm trial has been published and everyone is excited

Professor Dean Fennell working with University of Southampton

University involved in new trial to fight cancer caused by asbestos

Professor Dean Fennell

Patients with a hard-to-treat type of cancer are being given new hope in a ground-breaking clinical trial.

Researchers at our University working with the University of Southampton are trialling a drug that could boost the body’s immune system to fight off mesothelioma, which can be caused by asbestos.

The trial will be one of many to be conducted at the University of Southampton’s Centre for Cancer Immunology, which will be the UK’s first and only centre dedicated to cancer immunology research.

Mesothelioma rates are rising. Since the late 1970s, mesothelioma incidence rates have increased almost six-fold (497 per cent increase) in Great Britain. There were around 2,700 new cases of mesothelioma in the UK in 2013 – more than seven cases diagnosed every day.

Current treatment methods include chemotherapy, radiotherapy or surgery and are mainly aimed at keeping the cancer under control.

The phase III randomised controlled trial, which is funded by Cancer Research UK and supported by Bristol Myers Squibb, will test whether nivolumab, a drug already used to successfully treat advanced melanoma and advanced kidney cancer, can be used to target mesothelioma.

The trial, which is being run in collaboration with the clinical lead Professor Dean Fennell at the University of Leicester, plans to recruit 304 patients, who have relapsed mesothelioma, across 20 UK-wide sites including Southampton and Leicester.

Professor Fennell said: “Preliminary studies targeting PD-1 in mesothelioma have shown promising activity. CONFIRM aims to definitively assess the true benefit of nivolumab for patients with relapsed mesothelioma in a setting where there is an unmet need. Critically, we aim to understand why patients respond (or not) to this drug, and identify biomarkers to ensure that we can personalise therapy to maximize the benefit for patients

http://www2.le.ac.uk/news/blog/2017-archive/may-1/university-involved-in-new-trial-to-fight-cancer-caused-by-asbestos

both-of-us

My Article was printed as well

The trial has been launched ahead of International Clinical Trials Day, which is marked on 20 May each year, but this year has events taking place today (Friday, 19 May).

Professor Gareth Griffiths, the study’s co-Chief Investigator from the Southampton Clinical Trials Unit at the University of Southampton, said: “The UK has one of the world’s highest incidences of mesothelioma and currently there aren’t many ways to treat it. Boosting the immune system by releasing killer T-cells that have previously been blocked could offer us a new way to treat more patients with this devastating disease.”

The trial, which is being run in collaboration with the clinical lead Professor Dean Fennell at the University of Leicester, plans to recruit 304 patients, who have relapsed mesothelioma, across 20 UK-wide sites including Southampton and Leicester.

Professor Fennell said: “Preliminary studies targeting PD-1 in mesothelioma have shown promising activity. CONFIRM aims to definitively assess the true benefit of nivolumab for patients with relapsed mesothelioma in a setting where there is an unmet need. Critically, we aim to understand why patients respond (or not) to this drug, and identify biomarkers to ensure that we can personalize therapy to maximize the benefit for patients.”

One person who has already benefited from using the immune system to fight mesothelioma is Mavis Nye, who was diagnosed with the disease in 2009. After various courses of treatments which failed, she joined a phase 1 immunotherapy trial to test the drug (Keytruda) on how well it blocked the PD-1 protein and enabled the body to fight off a number of cancers, including mesothelioma. After the first two years, scans revealed the tumors had decreased by 81 percent, with three disappearing completely. Mavis is now cancer-free and spends her time raising awareness about the importance of clinical trials.

She said: “I was just an ordinary woman whose husband worked at the dockyards in Chatham. We didn’t know what the effects of the asbestos on his clothes might be. Cancer is a terrible and devastating disease that turns everything on its head. I am so thankful that the trial I took part in worked. But it didn’t work for every participant. We need more trials to help improve treatments and survival rates for cancer, and this new trial is a big step in the right direction.”

Dr. Catherine Pickworth, Cancer Research UK’s science information officer, said: “Immunotherapy treatments work by turning the power of our immune system against cancer. They are already being used routinely to treat advanced skin and kidney cancers, and are showing promise for other types of cancer too. This clinical trial will find out whether an immunotherapy drug could benefit people with mesothelioma, which is hard for doctors to treat successfully. We urgently need trials like this to help improve survival for patients with this aggressive type of cancer.”

The construction of the Centre for Cancer Immunology is expected to be completed by September and aims to be in full operation in summer 2018. It will bring world-leading cancer scientists together under one roof and enable interdisciplinary teams to expand clinical trials and develop lifesaving drugs.

The Centre, which is based at Southampton General Hospital site, is being funded by a £25 million fundraising campaign by the University of Southampton.

Professor Tim Elliott, Director of the Centre for Cancer Immunology, said: “The University has made major advances in tumor immunology and immunotherapy over the past 40 years and we enjoy a strong reputation for our ‘bench to bedside’ approach. The new Centre will go a long way in helping many more people with cancer become free of the disease, and we hope this new trial to fight a particularly sinister type of cancer will be the first of many successful trials.”

http://www.news-medical.net/news/20170519/New-clinical-trial-offers-hope-for-patients-with-hard-to-treat-cancer-caused-by-asbestos.aspx

Once again Dean and I have shared the limelight x

I did a broadcast at 7.30 and then we had the cameraman and interviewer at 10 and Ray and I told our story and then we did extra shots working in the Garden which was a laugh.

We were on the 6pm News on BBC it is weird watch your self on telly.

The door bell rang and there was the florist with a lovely bouquet from Anglia Asbestos Disease Support Group

https://www.angliaasbestos.co.uk/

A Diary Of A Mesowarrior living with #Mesothelioma #Asbestos -My Weekend at The Anglia Asbestos Support Group In Norfolk

norwhich 1

Where do I start to tell you about this weekend-OK start from the beginning.

We were invited to speak at the Anglia Support Group in Norwich so we put Louis in the Kennels and set off on the fast train.

We had to get to an idyllic countryside location, luxury guest accommodation and a host of top-quality amenities, Sprowston Manor Marriott Hotel & Country Club provides a stylish backdrop for travellers to Norwich. Housed in a stately 16th-century English manor, our rooms and suites offer a rare combination of historic elegance and contemporary comfort.

We were here to attend a Charity Night in the marque so we arrived and changed and walked through to the vent.

norwhich

B&B Charity Ball

Julie Sapey is a member of the Anglia Asbestos #Norwich support group, and she has worked tirelessly to raise funds for local good causes following her mother’s #mesothelioma diagnosis in 2013. Julie will be hosting her popular May Ball at Sprowston Manor on Friday 12 May in aid of Norfolk and Norwich University Hospital and the Priscilla Bacon Lodge Support Group.

With the Auction and Raffle £6000 was raised and Julie gave me a lot of advice for my own Charity Night in the autumn.

Saturday we had breakfast and packed the cases. We were met by Brian Wallis, Evelyn and Joe and we were given a wonderful tour of the Broads .

We travelled on the Reedham chain ferry

The Reedham Ferry is a vehicular chain ferry which crosses the River Yare in Norfolk. It crosses the river near the village of Reedham, forming the only crossing point between the city of Norwich and Great Yarmouth and saving users a journey of more than 30 miles. The current ferry was built in 1984 and was designed and built at Oulton Broad by the late Fred Newson & the present owner David Archer. The ferry can carry up to 3 cars at a time and can carry a maximum weight of 12 tonnes.

There has been a crossing at Reedham since the early 17th Century. The original ferry was called Norfolk Horse Ferries UNDER STABLE the horse drawn vehicles were the main users of the ferry boat.

The Archers came to Reedham Ferry early in 1949 and proud to boast we are still here now after 3 generations.

The Iferry-boat in 1949 was still being hand-wound across the river Yare until early 1950 when the ferry became motorised.

ferry

We were shattered when we booked into our new hotel and had a dinner.

Sunday we were met by Terry and Sally and set of for a tour of Norfolk to the coast of Cromer where we met their family. Vicky and the twins who taught Ray how to catch crabs.

They really wore us out it was heaven to get back to the hotel and have a cup of tea.

I’m so grateful to all the touring thank you so much xx

So for the purpose of the trip on the Monday we went to Astons office. What a wonderful bunch of people. I was able to meet Mesowarriors I have known for many years and it was great to be able to hug old friends and now new.

norwich 1

So many questions were asked and I could answer everything. I asked 2 nurses if they thought I answered well as I do worry about giving clear honest Information. They were happy that I was all correct x

I have recieved a lovely email from Brian :-

Dear Mavis and Ray,
On behalf of the Norfolk branch of Anglia Asbestos Diseases Support Group, please accept our sincere thanks for your attendance at our monthly meeting in Norwich on Mon. 15 May, 2017.
We would also like to thank you for your friendship and wise counsel at our other events over the week- end ; the N&N Hosp. Trust May Ball, and our visits to the Norfolk Broads with Eileen and Joe McConnell and Norwich city with Terry and Sally Vine. The whole weekend was truly memorable for us – thank you. We hope that we did’nt over tax you too much and we hope that you arrived home safely.
Terry, Sally, Eileen and Joe with our partners Ashtons Legal and the Lord Mayor of Bury St. Edmunds, Cllr. Patrick Chung were instrumental with me in setting up AADSG in 2016. After a year’s hard work, it was lovely for some of us to get away “from the office” for some social events, in our action packed week-end. However, we think that Ray may need a few more visits to the County before he is ready to set up “BMRT – Norfolk Tours” in competition to Hoseasons ! You will always be welcome !
During your presentation at the meeting a number of questions were raised from the floor during the Q&A session and I thought you might like a note of these as an aide-memoire, for your blog-site :
VIM Trial, Leicester – Pol 1.
Confirm Trial – Dean Fennell
Patients Energised for Trials
Carers – Feeling of Guilt (Ray)
Support for carers ie. Carers UK
Accumulative effects of Chemo.
Mutations/Toxicity (Keytruder)
Pembrumizolab
Is there a wait for Confirm Trial (?)
Does Chemo. have to come first (?)
Is there a three year wait after first diagnosis (?)
Transfering from NHS to private sector/and vice-versa
Getting a second opinion
NHS transfer to other at hospital request ( experiences, some Trusts, not willing)
I hope the above are useful, although I may have missed a few. Very best wishes for the success of your Foundation. Please email me details.
Hoping to see you both again in the near future
Many thanks and kindest regards, Brian
_________________________________
Brian Victor Chamen – Wallis
Chair : AADSG
Ambassador : Mesothelioma UK CHaritable Trust.

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos. My Foundation is now Public On Social Media. NHS TSSG Meeting

I’m sorry I haven’t been blogging but I have had to write so many articles and write ups for magazines and for other people to use in their write ups The world has gone mad around me.

So many people are interested in the fact I have made The Mavis Nye Foundation Public.

http://www.onestopmesothelioma.com/mavis-nye-foundation.html

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My dream has happened a Non Profit Making Charity

  1. I have fulfilled a dream and the Mavis Nye Foundation is set up in a small way and I hope I see it mature into a larger Charity. This is my Legacy and knowing I will be helping Research and Mesowarriors now and on into the future makes me so happy. I want to pay back for wonderful treatment the NHS and MSD have given me, as it grows I can do more but thank you for all just being there for me An Official Website is being built so we are using my Onestop for now although I do like it as it has all my journey on there it would be nice to keep it like this but we will see.

The Charities aims are :-

A) THE RELIEF OF FINANCIAL HARDSHIP BY PROVIDING AID TO THOSE PERSONS IN THE UNITED KINGDOM REQUIRING ASSISTANCE TO ACCESS MEDICAL TREATMENT, IN PARTICULAR EXPERIMENTAL MEDICAL TREATMENT, AND;
I) HAVE BEEN DIAGNOSED WITH MESOTHELIOMA OR OTHER LIFE THREATENING DISEASE CAUSED FROM EXPOSURE TO ASBESTOS; AND
II) ARE NOT ENTITLED OR ARE UNABLE TO PURSUE A CIVIL CLAIM OR OTHER AVENUE OF LEGAL RECOURSE TO OBTAIN COMPENSATION; AND
III) ARE IN NEED BY REASON OF A LACK OF MEANS.
B) THE ADVANCEMENT OF LABORATORY AND CLINICAL RESEARCH IN THE UNITED KINGDOM FOR THE TREATMENT OF MESOTHELIOMA AND OTHER ASBESTOS RELATED DISEASES FOR THE PUBLIC BENEFIT AND THE DISSEMINATION OF THE USEFUL RESULTS OF THAT RESEARCH.
C) TO ASSIST IN THE TREATMENT AND CARE OF PERSONS SUFFERING FROM MESOTHELIOMA IN PARTICULAR BUT NOT EXCLUSIVELY BY AWARDING SCHOLARSHIPS OR GRANTS TENABLE AT ANY BRITISH UNIVERSITY OR INSTITUTION OF HIGHER EDUCATION FOR HEALTH PROFESSIONALS IN FINANCIAL NEED AND ENDEAVOURING TO WORK PRIMARILY IN THE FIELD OF MESOTHELIOMA NURSING IN THE UNITED KINGDOM

Starting small and growing with it is the goal now.

I have to produce a Charity Just Giving Page or something like that and set up the bank details for easy paying but we are now live and that has been an exciting day.

We will be having a Proper Charity Launch Diner Dance in the Autumn but one thing at a time.

I would like to thank Moore Blatch for all the hard work, Trevor Stirling and the team you have helped me to put this dream into reality.

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Trevor calls me the Modern Day Mary Seacole bless him I can only look up to such a wonderful woman.

 

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Today also was the TSSG Meeting at The East Malling Research Station. Surrounded by 200 hectares of fruit orchards, The Orchards Events Venue is a modern purpose-built conference venue in Kent situated in a perfect location to escape the hustle and bustle of the office environment, allowing delegates to be more focused and meetings more productive.

If you want a conference this is a lovely place to hold it.

It was wonderful to meet up with everyone from East Kent Lung Cancer. I have known them for 8 years now so I’m perfectly relaxed to talk and ask questions.

We talk about Quality Surveillance, InfoFlex Data, Invasive Pulmonology, Stereotactic Radiotherapy, Cancer Resection ,Cancer Alliances, Lung Pathway, all so interesting to be part of such interesting people.

So many facts and figures but  I’m getting used to medical jargon and if I don’t understand it I don’t let on ha ha !!

I did learn that we have to send our BI-Op samples to Birmingham. How time-wasting and so they are looking to do it in-house.

My Royal Marsden Doctor phoned to say my blood result is still out that I have high Potassium so he would contact my GP.

We got home to find a message from my GP but we had got in to late.

He has left a not on my records in Reception that I can just walk in and have another blood test.

Oh dear I have to rush around tomorrow before going away and get this test done. I wonder what all this is about. I’m not worrying and it wont spoil my weekend. Promise

 RIP Lou We will never Give Up Lisa Singh talks to the floor In Tasmania

My tribute in the Senate to the late Lou Williams, one of Australia’s most effective and inspirational campaigners against the scourge of asbestos. She will be missed.

A Diary Of A Mesowarrior living with #Mesothelioma –My Scan Result today hmmm !! -and a Fire wallet trick and #asbestos

The two months have flown by and I had a scan Last Friday so it was scanexity as we travelled today to the Royal Marsden in the teeming rain.

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As the appointment was 11am we knew the car park would be full so I jumped out of the car and got started. Ray met me in Dracula’s room where I gave my blood.

We then was called into the room by my nurse and the Doc soon walked in. He shook hands and said he has been wanting to meet me as he had heard so much about me All smiles he said the scan result was so very good and everyone is still pleased.

BUT

That blip that is showing in my Liver is still there and it might be a group of veins or a cancer that is very very slow growing so please do not worry as the size isn’t any different. They are going to talk about whether the next scan should be an MRI to really check.

He begged me not to worry.

Then on the way home the phone went and the doctor asked me to get a blood test done at my GP’s as my Potassium is high and have I been binging on bananas !!

I have come home and made an appointment and I have had an email to ask when I have had it done to phone the Royal Marsden and they will chase the result.

Another email said I have to ask for a Potassium and Urea and electrolytes googled !! they are the most commonly requested biochemistry tests. They provide essential information on renal function, principally in excretion and homoeostasis. Creatinine levels are a major factor in determining the estimated glomerular filtration rate, which is the gold standard marker of kidney health.

I do have a suspicion that I know the Immunotherapy drug switches my  Immune system on and it fights the cancer but what stops it turning on my organs. Nothing it can keep going and then destroying my good cells . An unleashed immune system can attack healthy, vital organs: notably the bowel, the liver and the lungs, but also the kidneys, the adrenal and pituitary glands, the pancreas and, in rare cases, the heart.

My mind is going into over drive now so deep breath and keep calm. I have too much to do.

dragon fly candle

I have been having a great discussion about a picture a friend in Australia sent me.

It all started with this Just received this little gem from Melbourne Australia here’s something you don’t see every day. About 2.5 years ago, a removalist (asbestos stripper) handed me one of these. His daughter bought it at a fair in Melbourne, from a magic shop. Turns out the shop had been importing these from china, had no idea it had a chrysotile ripe patch in the middle. What happens is there is a lighter flint built into the wallet, and you soak the chrysotile with lighter fluid. As you open the wallet, you strike the flint and a flame appears ‘as if by magic’. Of course it doesn’t burn. There are videos on YouTube with this. Thought you might be interested in this picture. One of my more interesting finds.

fire 1

fire 1

I googled and yes I came up with a video that I just cant believe

Then even worse we can buy them on Amazon I wonder if these have been tested for Asbestos

Fire Wallet Magic Trick by Free Post Magic 

|
Price: £17.19 FREE UK delivery.
 TonR sent me these wallets
Then My Australian friend sent this :- scary. I contact sellers on ebay and things like that all the time. I got given 2 ww1/ww2 gas masks by a seller because i told them about the potential of there being asbestos in the filters. got them both back to the lab and they were.
gas maskgas mask fibres 2
This is the Asbestos filter they tested.