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.

 

 

A Dairy Of a Mesowarrior Living With #Mesothelioma #Asbestos -The Gems Study Money Raiser and the Royds Withy King Nurse Study Day

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10 Oct saw us at the Gem Study at a lovely venue -The Crypt on the Green

Aliyah Of 12KBW really set up a nice evening to raise funding for MesoUk GEMs study and The Mavis Nye Foundation was honoured to sponsor the  reception drinks. I was the first to be interviewed and the interviewer was happy with my knowledge of how men and women are treated differently by some hospitals who treat Mesothelioma.

|Ray Gave a painting to be auctioned and Harry Steinburg Sold it at £450.00 to a 12 KBW Lawyer who since then has contacted Ray and says how he loves it so much x

Gendered Experience of Mesothelioma Study (GEMS) Looking for Participants

Consultation with health and legal professionals indicates that women may have a different experience to men regarding mesothelioma in terms of awareness of the disease, diagnosis, access to treatment and compensation and legal processes. There are many possible explanations for this but little research to establish what is actually going on.

GEMS is a Mesothelioma UK collaborative study supported by generous donations from 12 King’s Bench Walk, HASAG, Irwin Mitchell, Mesothelioma UK, Papworth Mesothelioma Social Group, and Royds Withy King. GEMS is being conducted by the Mesothelioma Patient Experience Research Group at the School of Nursing and Midwifery, University of Sheffield.

The study is now seeking patients who received a mesothelioma diagnosis more than six months ago who would be able to take part in a telephone interview.

The GEMS study aims to explore the experiences of men and women with mesothelioma, their family carers as well as the various staff with whom they come into contact.

We will seek to understand why any differences that are identified occur. Our goal is to establish with participants how services should best be delivered to be accessible and acceptable to both men and women.

If you have been diagnosed with mesothelioma more than six months ago and would be able to take part in a telephone interview, please email info@mesothelioma.uk.com or call free phone 0800 169 2409 for more information and to be put in contact with the research team

Thursday 17th

We travelled to the TSSG meeting for East Kent and had a good meeting although I can see things have really changed in the NHS in the 9 years I have attended this meeting.

I do worry about our NHS when we have these wonderful people trying hard to make things run smoothly.  To many chiefs and not a lot of Indians. Bless them as the CNS seem so despondent.

Then yesterday off to London early to the Royds Withy Kings Nurse Study Day.

 

 

 

 

 

 

 

 

 

 

 

So many people we already knew from travelling around the country meeting at so many Study days, conferences etc etc

 

 

 

 

 

 

 

 

 

 

 

 

 

Dr Riyaz Shah bought us up to date with Immunotherapy trial results as he has just returned from Barcelona #ESMO19 It was a very interesting talk.

Nicky Howe talked about Asbestos and how people are exposed and the diseases that it causes.

Tony Milson spoke about Wills one thing I learnt was for husband and wife to have separate bank account then you dont pay inheritance takes. It was a bit complicated so i need to check it out.

Jennifer Seavor gave a talk about postmortems, a awkward subject but she answered so many points that on our forum we can now help.

It does seem though the Coroners can ask for a PM when some do not so it does all depend on the Coroner he has the final say.

Joanne Hargrave gave an update on the role of the Thoracic Nurse

Rachael James gave a spoke about Private funding of treatment when you can make a claim.

Dr Charles Twort spoke about diagnosing Mesothelioma

Rachael Thomas spoke about Pain management and even talk about cannabis oil.

Helen Childs spoke of what we need to know about claiming benefits and the cases where she has won a claim.

 

 

 

 

 

 

 

 

 

I then closed the day talking about today’s asbestos problems and  Asbestos in Schools.

read out a poem i was given by a mesowarrior that her 12 year old Granddaughter wrote.

Dear Mavis We lost my father as you know 7 yrs ago and my youngest daughter was only 5yrs old. She wrote this poem for a project in ENGLISH and at aged 12 yrs I am shocked at how it has impacted her young life forever

Living Death

Here I tell the story of a boy that I knew well…he was not but 15 years old when he was condemned to die…

I came to him one day in 1956

He was just an innocent boy, undeserving of what I did.

As he grew and thrived I chuckled to myself

I watched his dreams of his children and his wife,

Always knowing he would die, I watched him slave away, at a life I would eventually take!

For 50 years I slumbered, as happens in all I infect

Mutating their cells and organs,

No way for doctors to detect.

Unknowingly you breathe me in

Tasteless, colourless, only a microscopic fibre;

Trillions upon trillions, only as big as a penny;

You breathe in unfathomably many.

Since Roman times they knew I killed,

Yet stupidly they did nothing… to protect the millions

as they march blindly to my will.

I’m all around you now, waiting in the shadows,

Of homes, nurseries and office blocks.

I snigger to myself, as I watch you take your bows,

one by one you suffer and die,

as the hands tick round the clocks.

Why don’t you stop me? You come like lambs to slaughter,

Sending your babies, your fathers, your mothers,

your sons and daughters.

You say I cause you pain and tear people from your lives,

yet the people who can stop me… do nothing and perpetuate their lies!

Lies that I don’t kill and disease your bodies and minds.

Lies that I am harmless and ok to use – it’s all fine!

You allow them to keep mining, more of me from the ground;

Weaving death into your every walk of life.

People are crying, screaming in pain,

yet I come back for another round!

Year on year I take you, decade after decade you come.

For centuries I’ve taken you… yet still nothing is done?

Governments said ‘It will breed itself out!’

‘It’s a generation of old men’

But those old men are your Grandads, your children and now your mums.

I hid in children in the 60’s,

Mothers and babies in the 80’s too!

I will infiltrate you now, if you are not careful,

I will take what I want, not matter what’s due…

…I am Asbestos

‎Maxx L C Higham

It ended the day perfect if a young person can write a great poem like that then we are getting through to the young that Asbestos kills and we must erase it from our lives.

Thank You Maxx you bought tears to everyone’s eyes and a hug to your Nan xx

 

 

 

 

 

 

 

Thank you for the lovely day and for inviting us see you next year xx

Helen Childs

 

 

A Diary of a Mesowarrior Living with #mesothelioma #asbestos – Treatment and trials and fun

 

Its a long time that I have sat down to write a blog.

My trial at the Marsden is taking so much of our time. We are 850 miles in a week it is unbelievable and although we are paid for parking and mileage it doesn’t cover the wear and tear on the car, thank goodness we updated our car to a newer one as we must have reliability especial with the winter coming.

On October the 1st Ray and I went to the Marine Hotel in Whistable to give a talk to the 41 Club (a club based on The Association of Ex-Round Tablers’ Club where you are only allowed to stay up to  40 years hence a 41 club.

We were there to give a talk on our journey and the work we do with the Foundation as Lisa Goldsworthy, a lovely Mesowarrior that friended me when she was diagnosed. She was a school teacher at our local school

 

 

 

 

 

 

 

 

 

Lisa had always wanted me to talk at the club and her Father contacted me and I agreed to talk after her death.

It was a lovely evening with a nice meal and we gave an after-dinner talk.

They raised £75.00 and donated that to the Mavis Nye Foundation

 

 

 

 

 

 

 

 

 

The next day we put Lous into the kennels and travelled to Chester as the BISF was going to award me with a  ‘Outstanding Contribution’ award.at the 2019 BSIF annual Networking event and what a fantastic! event.

Everyone looked after us so well for 2 days of fun and laughter.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We did have a great evening and made so many new friends also they collected over £1100 pounds for the Charity so very grateful to everyone for thinking of the Mavis Nye Foundation.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Next day we travelled to London to the Erase Meso Event at the Brewery in London.

We stayed overnight at the hotel that was there. Directly they saw ray a lady said “Oh you can do with a shower and other items” I said you mean disabled room” “Yes ” she said.

I told Ray he was looking rough !! bless him.

It was a club room and very big but I dont like the wet room. Once the tiles get wet they are so slippery.

We changed for the evening and went to the event.

It was brilliant, well organised.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I don’t know how much money they raised for the Charity but I expect they will announce soon as it must have been a huge amount I played a small part as mavis Nye Foundation had donated the entertainment for the evening and Paul and Jill Cook gave my Foundation and myself so much advertising xx

We relaxed all weekend and then Monday it was off to the Marsden for blood tests to know if I could have my drug all week every 5 days.

All was Ok then on Tuesday they surprised me with an infusion of Pembro. I didn’t think it was so soon after the last one but this was the day to have both drugs together.

Pembrolizumab and a new drug called guadecitabine

Well, I have survived and felt very well if still very tired.

We did sneak in a visit to London yesterday to go to 12 KBW event raising money fro the GEM Study

Gendered Experience of Mesothelioma Study (GEMS) Looking for Participants

The Mavis Nye Foundation donated the welcome Drinks as I wanted to play a small part as I have done my interview and the lady who called me said I had set a hard presidency as I had so much knowledge of the disease. I realised as I spoke that there is a huge gender difference I hope that is what is shown by others.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This morning we got up later and went to get my last Injection. We are really looking forward to having 2 weeks off no. Im at the 3rd session only 31 more to go EKKK!!!

 

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos —Reporting on my busy week. CT scan Bi-op it goes on and on

 

 

 

 

 

 

 

A week of rush that started on Monday with a CT Scan at the Marsden.

The young nurse didn’t put cream on my port so I jumped as she tried to access my port which made her miss the hole and the pin went down the side of the point. Oh dear, I did feel that. it was bleeding as well.

She asked another nurse to do it which was better and my port was opened.

The contrast was put in and it was so much better than canula’s and plasters

Tuesday was Ray’s appointment at our local Small injuries surgery. It was a brain scan and they used the mask. Poor Ray isn’t used to all this medical and he didn’t like that.

We have to wait three weeks now for results.

Wednesday Back to the Marsden for my BI-Op.

Such a lovely caring Doctor but the needles hurt as one by one they push deeper.

Then the three clicks where she takes a sample. She said they are learning so much from me, so maybe that’s ok then.

Ray said you’re so brave, as he sat watching.

I was taken back to the ward to rest and I thought I was off home—NO!.

They took blood and we had to wait for the results where they then gave me pembro. Yes, I have my wonderful drug again. they give it separately from the drug thats put in my tummy for 5 days as they just want to see the reaction if any.

Must say all the blood taking and pembro through the port was brilliant.

We left there at 5 so that wasn’t too bad.

I was shattered and slept early that night it was good to have a day off Thursday and relax and nod off in my recliner.

Friday -Last night – We went to Canterbury Uni.

Foundation Day Lecture: Healthcare Now and For The Future
Delivered by Professor Helen Stokes-Lampard, Chair of Royal College of General Practitioners
Foundation Day is held each year in celebration of the foundation of the University of Kent.
The anniversary of the University receiving its Royal Charter in 1965 is celebrated every year at Foundation Day. This year we welcome Professor Helen Stokes-Lampard, Chair of the Royal College of General Practitioners (RCGP), to deliver the Foundation Day lecture. It is titled Healthcare Now and For The Future.Professor Stokes-Lampard is Chair of the RCGP, the UK’s largest Medical Royal College, representing over 52,000 family doctors across the UK and internationally. During her time as Chair she has had an exceptionally high profile and traveled extensively, building alliances and collaborating across the breadth of health and social care with the aim of improving the working life for GPs and insuring the highest possible standards of care for all.
There will be a drinks reception following the lecture.

https://www.kent.ac.uk/events/event/39958/foundation-day-lecture-healthcare-now-and-for-the-future?fbclid=IwAR0PZm25inoSGxNFdQQ_Qk7KtlckI3yeWBRkAgobi6QAPgnF-wkIr2_UPwo

Helen Jayne Stokes-Lampard FRCGP is a British medical academic and a general practitioner. She is Chair of the Royal College of General Practitioners, the UK’s largest Medical Royal College, representing over 52,000 family doctors across the UK. She has an interest in women’s health. and her lecture was brilliant and showed that the NHS is fighting back and has 5 year plans no matter what the political problems.

We then had drinks where Ray almost past out with the heat and noise as standing for these meetings is just not on and I must always find him a seat. he perked up and enjoyed the food bless him.

So today has been a resting day as we get ready for another busy week next week.