A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — The last shot at my new trial all my fingers are crossed all I want for Christmas is Shrinkage

 

 

 

 

 

 

 

 

My life has been very medical since my last writing of my blog.

We travelled to the Marsden only to find my blood was out. The first week it was reported her neutriphil count was 1.12 but then the next week it dropped to .06??

I was told to stay away from any infections so train travel was right out of the picture.

I feel I have really let people down since being on the trial as the guadecitabbine has done its worse.

I did have a scan and the result I got this week was stable. Is there a glimmer that Pembro is kicking back??

Only time will tell as Im now on the lowest dose I can have of this new drug.

I have been researching for myself of what new drugs will appear 2020. Always on the look out for what is going on.

This Monday we travelled to the Marsden in some horrendous traffic jams as the M20 gets worse but we made it and I was told my blood count had jumped right back so treatment was possible.

Such a relief but as I have said this is it no more going lower on the dose.

Everyday we have travelled in very heavy traffic 3 times just for half an hour stay as the injection is so simple and they fit me in quickly.

Poor Ray has been so good driving me with an injured back as he had met with a hit and run accident last week.

He will insist in walking the dog in our narrow lane and a mad driver in a van hit him with his wing mirror. He didnt stop to see he had hit Ray into a bush, did he really care ?

A lorry driver stopped and made sure ray was Ok but neither had taken a number of the van.

In walked a shaking Ray and dog. I gave Ray a sweet tea and lots of sympathy and he insisted he was Ok but of coarse next day his back hurt.

He can now relax and really rest up as we are free from treatment for 2 weeks.

Christmas is almost here so I have to catch up and get straight.

 

 

 

 

 

 

 

 

We do have an exciting event on the 13th December when we have a Christmas jumper day in Essex so I will report all about that next week.

If your in Essex please drop in and help us raise money for The Foundation

A Diary Of A Mesowarrior #mesothelioma #asbestos — The story of a Mesothelioma Patient Sunday the 24th Nov 2019 the 20th anniversary of the banning of White Asbestos.

 

 

 

 

 

 

 

 

The story of a Mesothelioma Patient

Sunday the 24th Nov 2019 is the 20th anniversary of the banning of White Asbestos.

White (chrysotile) asbestos was banned in the UK in 1999, nearly 15 years after the first asbestos bans. This 1999 ban made the manufacture and supply of all asbestos products illegal in the UK. But so much had been used through the Industrial world in properties that were being built after the war that the problem was hidden, hidden until someone drilled a hole or renovated a house or even decorated a room. We then had the line of mesothelioma and other Asbestos diseases rise and rise.

I became a victim at the age of 15 as I met Ray and he was working in the Chatham Dockyard as a Shipwright. Ships had so much asbestos in as a fire protection it was right through a ship. When Ray came to meet me in college he had the dust on his clothes and I was breathing it in.

We married after his National Service was finished in 1960 and we had a family so we lived such a normal life until retirement when I was 60. We sold our house, bought a Park Home and a larger Motorhome.

We were set up to go to Spain to our son for winters and Whitstable for summer. WRONG!!!

We went to Spain for Feb 2009 and had a lovely 2 months sharing time with our son and daughter in law, we were in the Benidorm hurricane that caused a fire in the mountain by our sons Villa and had to evacuate so we travelled around and saw so much of the area it was a great day for us in the end except our Motor home was sooted up when we got back to the villa.

Back home I had breathing problems and a numb arm that after going to the Doctors he said I had a trapped ulnar nerve and ordered a x-ray which I had.

Then I went to vote on polling day but just couldn’t breathe but when I got home the phone was ringing and my Doctor told me to get to A&E as a bed was booked for me. The x-ray had shown a mass he said.

I did as I was told and I had 7 Litres of water drained from my lung. It had collapsed. From the fluid they grew cultures that showed Mesothelioma.

I had to travel to Guys Hospital for a Pleurodesis which is a procedure that uses medicine to adhere your lung to your chest wall. It seals up the space between the outer lining of your lung and chest wall (pleural cavity) to prevent fluid or air from continually building up around your lungs My lung inflated and I was OK.

This led to 4 years of Chemotherapy. 4 treatments with grow back each time until I became to toxic—No more treatment.

I couldn’t accept that and when a Professor suggested I get a referral to the Royal Marsden I listened and was soon under the Drug Development Unit with Prof Bono.

He had me in the MK3475-28 trial and I was on the new drug Pembrolizumab — This study will assessed the efficacy and safety of pembrolizumab (MK-3475) administered to participants with incurable advanced biomarker-positive solid tumours that have not responded to current therapy or for which current therapy is not appropriate. 28 Cancers were being tested only 3 places for Mesothelioma.

The trial was for 2 years in 2014 -2016 and I had complete response.

This gave me 2 free years to live so normal.

I had become a Asbestos Advocate talking to all the people involved with Asbestos. I want the younger people to stay safe when working with the dangerous Mineral. I always say “It killed us going in and it will kill us as it is removed”

I found myself travelling to give Presentations all around UK and Europe.

My own Charity was started also so I was fund raising in this time for The Mavis Nye Foundation.

I also kept the Face Book Groups running to help other mesowarriors to find information trials and treatment. I have made so many friends. Its been a full life and then 2018 the day we so dreaded came a scan showed growth. Not from the old Meso but completely new growth.

Lucky enough I had it in my trial papers that I could have the drug for 2 years if if it did grow back so I became the first person in the world to rechallange the drug for Mesothelioma.

A year all was well I had 14% shrinkage in 2 infusions then a scan showed the cancer had got cheeky and stopped the drug working.

I was then offered the New Hyper Trial Phase 1

This trial is for people with a solid tumour that has spread or continued to grow despite treatment (refractory).

Researchers are looking for new ways to help people with solid tumours that have spread or continued to grow despite treatments. In this trial they are looking at a new drug called guadecitabine.

Guadecitabine is a type of drug called a demethylating agent. It helps the immune system  to spot the cancer, which helps pembrolizumab to work better.  

Guadecitabine is similar to a drug called decitabine. Decitabine is already a possible treatment for people with acute myeloid leukaemia (AML). Doctors think that guadecitabine might work better than decitabine, but they need to find out for sure. 

Pembrolizumab (Keytruda) is a targeted drug called a monoclonal antibody. It stimulates the immune system to fight cancer cells. Pembrolizumab is already a possible treatment for people with non small cell lung cancer (NSCLC) and melanoma. 

This trial is in 2 parts. In the first part, researchers wanted to find the best dose of guadecitabine that you can safely have with pembrolizumab. This part is now closed. Researchers are now looking for people to join part 2. 

In the second part of this trial, everyone has the best dose of guadecitabine and pembrolizumab found during part 1. Doctors want to find out how well pembrolizumab and guadecitabine work and the effect it has on the body.

Im not finding the right level of Guadecitabine and my bloods are to low but they have adjusted the dose and 25% seemed ok but this week i showed it wasn’t working so Im waiting to see what their plans are. Reduction agan I suppose. All the patients on the trial are having the same problem BUT I have stable at the first Scan and Monday i have another scan so pray its shrinkage as the Pembro might have kicked back in to work. We will see.

I have given 3 Bi-Ops where they are looking at my DNA before the trial and during. They want to know how a cancer can turn the drug off what my DNA looks like before this trial but above all why I responded so well to Prembro as I only had 1% PDL 1

So many answers are in my body so Im pleased to help.

 

https://www.mesothelioma.uk.com/wp-content/uploads/2019/07/British-Asbestos-Newsletter-109_spring_summer_2019.pdf

Asbestos: Still alive and killing!

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Space Safe Virtual Reality Trial Results and the Christmas Lights Of London

 

 

 

 

 

My life goes in a puzzled world at times where I cant get straight.

I had to cancel BOHS because of treatment and then blow me down  after a 3 hour traffic jam on the M25 Monday and arriving late to the Marsden my bloods were out and treatment cancelled for a week.

So I will have my scan Monday and pray my bloods are good and I can carry on with treatment.

It was to late to go to Nottingham and not fair to mess people about so I was free to attend the Space Safe meeting at Queen Anne Street London yesterday.

This was the Trial I went into with the Virtual Reality head sets.

The SafeSpace study: using virtual reality to co-design health interventions for people living with and beyond cancer

 

Lisa Murray, Nurse Researcher with the Royal Marsden NHS Foundation Trust and member of the SafeSpace study team led by Professor Theresa Wiseman, tells us about this innovative virtual reality intervention study with the potential to benefit people living with and beyond cancer. SafeSpace is being featured at the 2019 NCRI and NHS England Living With and Beyond conference.

Many people living with and beyond cancer (LWBC) experience poor psychological wellbeing including increased levels of stress, anxiety, depression, guilt, anger, shame and other unwanted emotional states. Apart from being unpleasant, these states can contribute to poor engagement with therapy, poor lifestyle choices and a worsening of important relationships.

Co-designed health intervention

Experience based co-design (EBCD) is an approach for engaging all key stakeholders in the identification and the co-design of services and/or care pathways. It places an importance on working in partnership with service users to identify their priorities and solutions for service improvement as often these are very different to those of the service and staff working within it.

The SafeSpace study is a one-year study, funded by Macmillan Cancer Support, which seeks to use an adapted form of EBCD to co-design with people living with and beyond cancer a low cost, quality controlled and self-managed psychological health intervention.

Cultivating self-compassion

In addition to being able to enter and immerse themselves in high quality peaceful, calm environments, people with cancer will be able to access a series of guided exercises to help them cultivate and experience self-compassion, which is known to be associated with several therapeutic effects, helping them to rapidly relax and de-stress, while experiencing improved psychological wellbeing and self-compassion.

Study development

During the first phase of this study we ran an initial event to determine when and how this wellbeing intervention might be used along the cancer pathway. This was followed by four user-testing workshops at which participants were asked to test the VR experience and give feedback at each iteration of the design process.

The SafeSpace experience has now been developed and consists of three separate VR sessions which last approximately 10-12 minutes each. The user will be able to select from three VR environments: mountain, forest or beach. Once in the virtual environment, the user will listen to an audio recording which guides them through a series of exercises. Based on the feedback during the co-design, the user will hear a different, professionally recorded audio each time they use the experience, during which the concept and focus on compassion will be gradually developed. The aim of this is to introduce the concept of compassion to self gradually and help them orientate to this new way of thinking about themselves.

In phase 2, we will evaluate the feasibility and acceptability of using the SafeSpace intervention in the clinical setting and collect preliminary data to assess psychological and physiological effects of the experience. To achieve this, we plan to recruit 20 people who are undergoing cancer treatment into the study. Each participant will receive the three sessions of the SafeSpace study with each session being delivered separately.

Potential impact

The potential impact of this project could be significant – helping to reduce suffering and improve compliance during cancer treatment, as well as improving wellbeing, resilience and quality of life generally and at specific points along the cancer patient journey. General engagement with life, ability to cope with uncertainty and self-management skills may also be improved.

The team

The SafeSpace study is led by Professor Theresa Wiseman (Lead for Health Services Research), Lisa Murray and Geraldine O’Gara (Nurse Researchers) at the Royal Marsden NHS Foundation Trust. The study team also includes the following experts: Dr Andrew Macquarrie and Professor Anthony Steed (virtual environments and computer graphics), University College London; Professor Paul Gilbert (compassion focussed Therapy), University of Derby and Dr Tim Anstiss (psychological behaviour change therapies).

Further information

For more information about SafeSpace visit the Macmillan Cancer Support funded research site and find the study on the NCRI Portfolio Maps (‘Psychosocial Oncology and Survivorship’ area, Map A).

———————————————————————————————————————————————————————————————————It was great to see how well the trial was received and all the results.

I was asked to do a Interview video of how I thought it would work with patients and I said how it would be great when your in chemo it would calm you and even in a MRI scanner it would be good to show it on the white roof of the scanner and keep people calm.

So the trial will carryon with a larger amount of patients all that to get funding to get it into all hospitals.

I think that is a waste of time, it isnt a drug and the NHS should look at it as a piece of equipment and just allow it to happen. Friends of the hospital could fund this small project Im sure. I needs more advertising,

Anyway lunch was served and then we could go.

As we were in Oxford street we had a look at the shops and wished the Christmas lights were on but the sun was shinning away.

A Diary Of A Mesowarrior living with #Mesothelioma #Asbestos —A Mesowarriors Wedding- Raise a Glass to Danielle And Jack

 

 

 

 

 

 

 

 

 

 

 

Im so happy to write todays blog as I have met two of our youngest Mesowarriors Danielle and Jodie. Both looking so well that you wouldn’t  know the peritoneal Operation they have both been through. Macie wasnt there which is a shame I would love to have met her as well.

We attended Danielle’s Marriage to Jack at a lovely wedding venue in Farenham Surrey http://www.burycourtbarn.com/

 

 

 

 

 

 

We arrived a bit early so I met the bride and bridesmaid and Mother of the Bride all having the last minute hair tidy and make up before putting the dresses on.

We then went down into the wedding Venue and we sat with the brides grandfather who told us all about the steam railway that was near by.

Jodie and Susan her mother arrived so we had company until the start of the wedding.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Mr and Mrs Carter

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We had to leave before the disco started to get the train home Train to Waterloo where there was so many signalling faults but we did get through.

Then Jubilee line under the Thames change to Circle line and we made good time for a train at Victoria. Tired but after having a wonderful Day we got home to a hot chocolate.

Have a really happy life together Danielle and Jack you are a lovely couple xxx

Daniella’s Story for IOSH NTTL

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos – Can plants cure Cancer here is my thought for today

 

 

 

 

 

 

I have never believed in not having chemo and trials for my treatment as I have fought my cancer with the hope one day that there will be a cure. Immunotherapy is the closest we have got to that cure and I have been a patient where it has worked for me and I have survived 10.5 years, as my diagnosis for mesothelioma was in 2009.

But running my groups on face book so many patients have not wanted to go down my pathway and have refused treatment. This causes their carers a lot of anguish.

Im always being asked about herbs and I always answer they haven’t been trialed, so we dont know.

BUT

When I google and I have found this article by the Cancer Research that really sums it all up I feel Im being naughty and unhelpful not to include alternative in my writings as one Mesowarrior has just said. — This is really tough! I believe strongly in the power of the mind – even if the herbs work as a placebo! It has to be your Dad’s decision ultimately. We pushed my father in law to fight – and, in many ways, wish we hadn’t – and had tried to enjoy the time we had left instead xx

That has really hit home to me as placebos can work sometimes as yes it is the power of the mind that is so unknown.

Cancer treatments can be hard on your body. Fatigue, weakness, hair loss, nausea, and pain are all byproducts of living with this disease.

The toll cancer takes on your emotions is no less serious, but it may not be as easy to spot. Most people have to learn to manage feelings like fear, anxiety, and depression at some point during their journey. That’s where mind-body medicine comes in.

This is a form of what doctors call complementary medicine. That means it isn’t the traditional type of medicine you get in a pill or shot. These are practices you do in addition to your regular treatments to help you relax and focus your mind so you can get more control over your emotions and improve your physical health.

How Mind-Body Medicine Works

Life with cancer can be stressful. When your body is under stress, it releases cortisol. This hormone sends blood and nutrients rushing to your brain and muscles so they can react to the threat at hand. Your muscles tense, your breathing quickens, and your heart beats faster. That takes resources away from other important body systems — including your immune system.

Long-term stress can strengthen the effects of your cancer and treatments like chemotherapy and radiation. Mind-body medicine helps you relax and buffer some of these effects. It can also help you manage your condition better. carry on reading here —

https://www.webmd.com/cancer/holistic-treatment-17/cancer-holistic-benefits

So maybe if your Mum, Dad, etc have mesothelioma and they refuse treatment we should listen and let them live their days out as they wish knowing that you are doing something to help and everyone will be relaxed maybe.

So here is the advice from the Cancer research and remember most medicine is plant base isn’t that what we are forgetting.

Herbal medicine

Herbal medicine uses plants, or mixtures of plant extracts, to treat illness and promote health. There is not enough reliable scientific evidence to use it as a treatment for cancer.

Summary

  • Herbal medicine uses plants or plant extracts to treat illness and promote health
  • There is not enough scientific evidence to use it as a cancer treatment
  • Herbal medicines might have side effects and interact with other medicines
  • Herbal medicines may not be regulated if made outside the UK, and what they contain can vary. If you are going to buy herbal remedies it is safest to buy them from a fully qualified herbal practitioner.

What is herbal medicine?

Herbal medicines are made from plants. They use combinations of plant parts, for example leaves, flowers or roots. Each part of the plant can have a different medicinal use. Manufacturers use different ways of extracting the chemicals from the plant parts. They use fresh and dried plants to make the medicine.

Herbal medicine aims to restore your body, so that it can protect, regulate and heal itself. It is a whole body approach. It looks at your physical, mental and emotional well being. It is sometimes called phytomedicine, phytotherapy or botanical medicine.

Manufacturers make many drugs from plants. But herbalists don’t extract plant substances in the way the drug industry does. Herbalists believe that the remedy works due to the delicate chemical balance of the whole plant, or mixtures of plants. And not from one active ingredient.

The two most common types of herbal medicine used in the UK are Western and Chinese herbal medicine. Less common types include Tibetan or Ayurvedic medicine (Indian).

Western herbal medicine

Western herbal medicine focuses on the whole person rather than their illness. So, the herbalist looks at your:

  • personal health history
  • family history
  • diet
  • lifestyle

Western herbal therapists usually make medicines from European and North American herbs. They also use herbs from China and India.

Herbalists use remedies made from whole plants or plant parts. They believe it helps your body to heal itself or to reduce the side effects of medical treatments.

Chinese herbal medicine

Chinese herbal medicine is part of a whole system of medicine. The system is called Traditional Chinese Medicine (TCM).

TCM aims to restore the balance of your Qi (pronounced chee). TCM practitioners believe that Qi is the flow of energy in your body and is essential for good health.

Yin and yang refer to different qualities of Qi. When all of the yin and yang aspects of Qi are in harmony with one another, there is health, wellbeing and peace. Illness is due to a disturbance of the balance between yin and yang. Chinese herbalists use plants according to how they affect a part of the body or energy channel.

TCM includes:

  • acupuncture
  • massage therapy
  • herbal remedies
  • traditional breathing and movement exercises called qi gong (pronounced chee goong)
  • movement exercises called tai chi (pronounced tie chee)

TCM uses hundreds of medicinal substances. Most of these are plants, but there are also some minerals and animal products.

Practitioners may use different parts of plants. They might use the leaves, roots, stems, flowers or seeds. Usually, they combine herbs and you take them as teas, capsules, tinctures, or powders.

Why people with cancer use it

Herbal medicine is one of the most used complementary and alternative therapies by people with cancer. Some studies have shown that as many as 6 out of every 10 people with cancer (60%) use herbal remedies. This is alongside conventional cancer treatments.

People have used herbal medicine for centuries to treat many different health conditions. They believe it is a natural way to help you relax and cope with anxiety and depression. Or, to help with other conditions such as:

  • hay fever
  • irritable bowel syndrome
  • menstrual (period) problems
  • eczema

People might also use herbal medicine to help themselves to feel better or more in control of their situation.

A 2011 study in the UK surveyed people with cancer who use herbal medicines. It found that most of the people used herbal medicines to feel more in control. And that it helped them to feel that they have some responsibility for their treatment. They also felt the therapies wouldn’t cause side effects.

How you have it

During your first visit, the herbalist will ask you general questions about your health, lifestyle, diet and medical history.

During your first visit, the herbalist will:

  • take your full history
  • ask about your family’s medical history
  • discuss your diet and lifestyle
  • find out about any medication or supplements you use

They will also do a physical examination, which may include:

  • feeling your pulse
  • taking your blood pressure
  • examining your skin and nails
  • feeling your abdomen
  • looking at your tongue
  • looking at your eyes

The herbalist will then decide which remedies you need. They will usually make it while you wait.

The remedy might be:

  • a diluted alcohol solution of plant parts (tincture)
  • powders made into tablets or capsules
  • water-based solutions like a tea that you make from raw herbs
  • a cream or ointment
  • oil-based solutions like a cream or ointment

Your herbalist may suggest that you go back for another appointment after a few weeks. How long you continue seeing them will depend on why you are using herbal medicine.

Who shouldn’t use herbal medicine

This depends on which herbal medicine you want to have.

It is important to check with your doctor first before taking any herbal remedies if you:

  • have any medical condition, including cancer
  • are having radiotherapy
  • are pregnant or breastfeeding
  • are due to have surgery in the next few weeks
  • are having other cancer treatment (conventional, complementary or alternative)

Using herbal medicines safely

Many people assume that products are safe to use when marketed as natural or herbal.

Some herbal medicines might be safe. But others can have severe and dangerous side effects. And, they might interact with other cancer treatments you are having. We need more research into this.

The Memorial Sloan Kettering Cancer Centre in America looked at how herbal medicines can change the way other drugs work. They suggest that the following herbal remedies can interact with cancer treatments:

  • ginkgo
  • kava kava
  • grapefruit
  • St John’s wort

Some herbal treatments might affect the way your body processes cancer drugs. For example the National Cancer Institute (NCI) in America says that St John’s wort can cause your body to get rid of the drug, imatinib (Glivec), quicker. This means it could make the imatinib less effective at fighting your cancer.

Some herbal medicines might increase the effect of cancer drugs. This means that you could have too much treatment.

Other herbal medicines can interfere with some drugs. For example, Asian ginseng and bilberry can increase the risk of bleeding after surgery.

Some herbal remedies make your skin more sensitive to light. Do not take them while having radiotherapy.

Finding a herbal therapist

In the UK, the Health and Care Professions Council regulates TCM. It also regulates other herbal practitioners. Contact them for a list of registered practitioners in your area. Most practitioners are members of the herbal medicine organisations listed below.

Side effects

Each type of herbal remedy might have side effects. Some are safe to use and do not have any noticeable side effects. But some plants are poisonous to humans and can have serious and severe side effects.

Always tell your doctor if you are using any type of herbal remedy. It might be helpful to ask your herbalist for a list of all the ingredients in your herbal remedy. Then if you do have any side effects, your doctor will know what you have taken.

You, your doctor or herbalist can report side effects. You report it to the Medicines and Healthcare Regulatory Authority (MHRA). The MHRA is the UK regulatory body. It collects information about the side effects of drugs, including herbal medicines.

Let both your herbalist and doctor know if you feel worse or ill while you are taking herbal medicine.

Research into herbal medicine for cancer

There is no reliable evidence from human studies that herbal remedies can treat, prevent or cure any type of cancer.

Some clinical trials seem to show that certain Chinese herbs may help people to live longer, might reduce side effects, and help to prevent cancer from coming back. This is especially when combined with conventional treatment.

But many of the studies are published in Chinese, and some of them don’t list the specific herbs used. Some journal articles don’t give enough detail on how the researchers did the studies.

It is difficult to know how reliable the research is and which herbs may be helpful. But there are trials looking into this.

How much it costs

Your first consultation with a herbalist will usually cost more than further appointments. Follow up appointments are generally shorter. So, are likely to cost less.

You will also have to pay for the herbs your herbalist prescribes. These costs may vary from place to place in the UK.

A word of caution

Herbal products in health food shops and pharmacies have to meet quality standards. They also need to provide information about their product. This includes the specific content and dose of the product and how safe it is.

In Europe, always buy products registered under the Traditional Herbal Remedies (THR) scheme. Remedies registered under the scheme have a THR mark and symbol on the packaging. THR products have been tested for quality and safety.

The Medicines and Healthcare Products Regulatory Agency (MHRA) regulates the registration of herbal products in the UK. They say that how manufacturers make unlicensed traditional Chinese medicines can vary.

Some have been found to contain illegal substances and toxic herbs. The manufacturers have not listed this on the packaging of the product. The amount of the active ingredient can also vary widely between products.

It is safest to buy herbal remedies from a fully qualified herbal practitioner. They have had training to work out which medicines are appropriate for you. They can also trace where their herbs and plants come from.

It is understandable that you might want to try anything if you think it might help treat or cure your cancer. Only you can decide whether to use an alternative cancer therapy such as herbal medicine.

You could harm your health if you stop your cancer treatment for an unproven treatment.

Some websites might promote herbal medicine as part of treatment for cancer. But no reputable scientific cancer organisations support any of these claims.

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/complementary-alternative-therapies/individual-therapies/herbal-medicine

A Dairy Of A Mesowarrior Living with #Mesothelioma #Asbestos – Asbestos in Beer/Two events that have raised donations for the Mavis Nye Foundation

 

 

 

 

 

 

The story broke this week of the use of Asbestos in clearing beer and other drinks.

Some pub owners added a handful of asbestos into “slops” at the end of shift and left it overnight for ‘cleansing’.

They would then serve it to customers the next day.

Researchers at Cambridge and Liverpool universities believe the asbestos put in pints of beer could be the reason behind a fourfold rise in esophageal cancers.

Brewery Filters Contained Asbestos

Filtering is a principal step in making beer. The best beer batches are highly-filtered to remove unsightly sediments and harmful microorganisms. This leaves them clean and safe for consumption. In the early days, many different materials made up brewing filters. Most were paper-based, but they were difficult to manage.

By 1880, the American brewing facilities began using cotton filters which they called pulp cakes. They lasted longer but weren’t very strong and didn’t do a decent job of trapping microorganisms which ruined beer quality. Around the turn of the twentieth century, someone had the bright idea to blend asbestos fibers into the cotton beer filters.

Asbestos in brewery filters seemed the perfect solution. Asbestos was stable when blending with other products. It contained exactly the right size of fibers to let liquid through yet filter impurities. And asbestos was widely available, easy to work with and economical to a source.

When blended with cotton, these ACM filters were easily cleaned and reused until they were worn out. That was a drawback to using asbestos. When it’s old and dry, asbestos becomes fragile or friable. Workers handling asbestos filters released tiny particles into the air. Most breweries used hundreds of filters daily, constantly exposing their employees to a toxic environment.

Asbestos in Other Brewery Parts

Other brewery parts contained asbestos fibers besides beer filters. Americans built hundreds of large breweries during the twentieth century and asbestos use peaked. Many brewery owners and builders thought asbestos was a wonder material for constructing facilities and protecting their mechanical systems. ACMs were excellent insulators, perfect for fireproofing, didn’t conduct electricity and wouldn’t rust around the tons of water present in beer production.

It was known in the 70’s but so difficult to prove Cancer of the gullet – the tube that carries food from the throat to the stomach, now with so many cases they cant turn a blind eye to the fact that currently kills almost 8,000 Brits every year.

Cases have been on the rise over the past 50 years with 90% occurring in men thats without it could be the cause of mesothelioma and peritoneal. Lets hope they look into this.

 

Its been a funny time for ray and I we are still getting our head around this travel to the Marsden, but we are coping better now it is 5 days every three week’s with the Tuesdays cut out of the 2 weeks.

Monday and Tuesday of the treatment week is a full on day but then wed thurs and fri are just arrive, injection and go we dont even pay parking fees as the first half hour is free.

I feel stronger again and eating better so putting weight on again. You might hear me moaning about that as I dont want to put on too much.

I have had to work around travelling to events and have had to postpone some big events where I was down to talk. They seemed to always be on treatment week. Next year will be different I hope. I hate cancelling.

But people have been working hard and donating to the to the foundation.

 

 

 

 

 

 

 

 

 

Elliot Hintons sent me a lovely email

Dear Mavis

My apologies for the late response however I can confirm that I achieved my sponsored LongMynd hike raising donations for your charity. All funds that were raised have been donated via your donations page and I hope that this contribution is a little help towards the fantastic work you do.

Overall the hike was one of the single most difficult things Ive ever achieved however the motivation for yourself and your team spurred me on to achieve the 50 mile hike in 22 hours and 46 minutes. Attached are some photos from the hike

I would just like to say on behalf of two of my sponsors who have been victim to Mesothelioma with their husband/father passing 8 years ago a huge thank you in the support you provide for others effected by this horrible disease. You are a true inspiration and symbol of hope for those unfortunate to be suffering or effected with this disease that I will continue like yourself to raise awareness and fight back against.

Keep up the good work to you and all your Mesowarriors

Kind regards

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

What a wonderful place to have hiked.

 

 

 

 

 

 

 

Then we had Natalia Rushworth took the name of our Foundation to New York Well done 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Natalia is still taking donations so we dont know the final figure yet

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=natalianyc&pageUrl=2&fbclid=IwAR3yz16R7ILsIuLgArGGZztdDiUb4G_bQzNfeApYL5iLLji63DDFRHsYVGI

Thank you to all that have donated i send a huge hug and a big thank you.

When we have had our board meeting Tuesday I will be announcing the event we are having in February 2020 to present the Research Grant and Auctioning all Rays paintings and to make an announcement of our future plan which is going to be exciting -Something to look forward to in the New Year all will be welcome.

 

https://www.mirror.co.uk/news/uk-news/beer-laced-asbestos-70s-linked-20792991

Source https://www.asbestos.net/occupations/work-sites/brewing-facilities/

A Diary of a Mesowarrior Living With #Mesothelioma #asbestos — My Belated Birthday Present

 

Frances Poet on tackling the asbestos tragedy in her new play Fibres

A STELLAR QUINES AND CITIZENS THEATRE CO-PRODUCTION

“We were two weans playing at wee hooses, him in his first job and me being the good wife doing his washing. Now we’re both paying the price.”

Jack is proud of his work at the Clyde shipyards. His wife, Beanie, who is nursing him through asbestosis, thinks he’s a fool. But the real test of their marriage comes when they discover that the dusty overalls Jack brought home to be washed by Beanie, poisoned her too. This isn’t what she thought Jack meant when he promised “what’s mine is yours”.

Meanwhile their daughter, Lucy, attempts to overcome her grief. Will she be held back by her parents’ experience, or will she have the courage to allow romance to blossom with Pete?

Written by award-winning playwright Frances Poet, Fibres is a big-hearted and laugh out loud play about what it means to entwine our lives with another, in sickness and in health. A story told by four characters who show a very Glaswegian resilience and wit, the play asks can we ever cut the cords that bind us and who will catch us if we do?

Cast includes much loved actor Jonathan Watson (Only An Excuse, Two Doors Down, Rab C Nesbitt) and Maureen Carr (‘ugly sister’ Edith in Still Game and baddie Theresa O’Hara in River City).

Stellar Quines is an award-winning organisation whose vision is to be Scotland’s leading touring theatre company, inspiring excellence in women and girls.

Source https://www.citz.co.uk/whatson/info/fibres

I cant wait to see this as it is a story that Mirrors my story and my life with Ray

 

 

 

 

 

 

 

A very wonderful outing in London yesterday.

I had a birthday present from Mary and Harry way back in August and we have just been able to get together to have our Tea at Cartridges.

The setting is very grand but very friendly so after a nice journey up there with a young man who didn’t stop talking loudly about how he travels on trains for free. He has worked out what station doesn’t have barriers.

I visited the new toilets at Victoria station after the refurb and was very impressed Gold doors no less.

 

 

 

 

 

Then we went for the tube to Bond street. I always come out the wrong exit so we had to ask a man working on the road works and there it was Claridges right in front of me.

Claridges Hotel Entrance London Mayfair Brook St

 

 

 

 

 

 

 

Harry followed us in and Mary was already there we sat down and had a wonderful Tea. The Champagne made me hick up.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We did sit and and talk and plan events for the new year but yesterday was a great treat.

A belated Birthday Present was enjoyed.

We travelled home very happy and very full.

Now Im ready to face the Royal Marsden everyday next week and ready for my treatment.