A Diary Of A #Mesowarrior Living With #mesothelioma #asbestos — A very full diary for the month and chemo!

July has been a weird month hasnt it.

With a heat wave never seen before so very hot and the thermometer going off the scale, I wilted and just had no energy but I did manage to enjoy sitting in the garden in the lovely evenings watching some wonderful sunsets.

We had our MNF Summer event with HASAG which turned out so successful with so many messages from people that they had a great time, which is all that matters and we will make this double event a yearly occasion.

I gave a talk on farming for IOSH. I hadnt realise just how serious asbestos on farms was until I researched and now know that with all the old machinery and old buildings it really is a danger.

Ray finally had his cataract operation done after 3 cancellations because his blood pressure and blood sugars were too high. It was worked out that he was suffering with white coat syndrome and given tablets to take for 2 weeks before the day. So success one eye has been done and its amazing how he can read small print again.

His optician will see him in August and pass him for the second eye to be done –brilliant.

I have been booking up hotels for all the engagements in my diary as I just wont let Mesothelioma get in my way and the really exciting trip to Amsterdam is wonderful as I get to see Harry Vonks Asbestos Museum thanks to Yvonne Waterman and her Conference in November at The Van der Valk Hotel Oostzaan, 10-11 November 2022 https://www.europeanasbestosforum.org/

Flights are all booked !!

We had a great day at the graduation ceremony at Canterbury Cathedral where as Hon Doctors Ray and I joined the Academics on stage a wonderful experience.

Robin Bennet

A trip to London was very interesting as we had been invited to a round table in the Church of England head office so thats another building we have been able to see inside. Church House Westminster where the Arch Bishop of Canterbury has his office.

The round table was to discuss Asbestos management but the Government released a statement on the 40 years plan to have asbestos removed from all buildings which is now causing concern and means it has given us another fight to contend with. :-

The Government remains concerned that moving to a fixed deadline for removal would
increase the opportunity for exposure which remains difficult to support if the current
risk of exposure is very low where asbestos can be managed safely in situ until planned
refurbishment works. The use of many public estates would also be significantly disrupted
by a removal deadline if this were introduced outside existing estates strategies. There
also remains a concern that introducing a deadline would stimulate poor removal and
disposal practices with a further risk of increase in asbestos exposures.
The Government agrees we need to understand more about the likely rate of elimination
due to current levels of asbestos removal though planned refurbishment and demolition.
National modelling carried out by the HSE as part of the forthcoming Post Implementation
Review of CAR, whilst based on estimates, indicates that there will be a substantial
reduction in the numbers of buildings containing asbestos over the next few decades.
HSE is also planning research to utilise digital information to more accurately define the
scale and location of buildings likely to contain asbestos and this evidence can be used to
inform future work and priorities

The full report is here https://publications.parliament.uk/pa/cm5803/cmselect/cmworpen/633/report.html

A train strike stopped us going to a meet up with HASAG yesterday, although the strike was on Wednesday the time tables were messed up with the station not opening until 7.30 and trains not in the right places. Chaos is being caused and another strike tomorrow (Saturday) chaos will reign over the weekend.

So very pleased to announce The Mavis Nye Foundation and in partnership with Hasag Asbestos Disease Support are together Funding a Mesothelioma UK Nurse We need more Nurses that understand Mesothelioma An exciting day for The Mavis Nye Foundation and its partnership with Hasag Asbestos Disease Support

I have had Chemo number 2 over the last two weeks. The double dose was last week and I was all good, just a feeling to be sick that subsides. The single dose was on Wednesday and Im just so tired but I cope with that.

The gem/Carbo regime isnt too gruelling and now I get 15 days free.

So now we go into August I wonder what that will bring me ??

A Diary Of A #Mesowarrior Living with #Mesothelioma #Asbestos– The Mavis Nye Foundation and #HASAG put on a Summer Event

Who would ever think that this old church could be such a great venue for two charities to come together for a summer event- but it did.

HASAG and The Mavis Nye Foundation came together to raise donations for the same passion we both have -Mesothelioma the Asbestos disease.

After weeks of planning we finally made it and the day arrived

On arrival early we decorated the hall with flowers and lights and it all looked lovely.

Our guests arrived and the event was underway

After a drinks reception a curry night was served.

I found the whole night very emotional as everyone came up to me and greeted Ray and I. We hadn’t met for so long. The pandemic has really been in the way of us enjoying these great nights out.

When your Doctors are at an event you have put on its so emotional and Miss King was a great surprise as I have so much affection for her, 13 years ago she did my pleurodeses and was so very kind to me in the operating theatre and her she is at a party I have helped to put on, the same for a wonderful doctor Professor Peter Szlosarek it was so lovely to see him again.

The highlight of the night was the auction where Rays painting raised £400

The great US Lawyer Brenden Tully did a wonderful job as a Auctioneer with all the prizes that had been donated which we were so grateful for.

https://www.youtube.com/watch?v=D-8DXnYrtAQ just watch the big man xx

SO here I would like to thank Hugh James. Richard Green, Mary Mulhall, Angharad and Racheal Thomas for all your hard work I really do appreciate all you did.

Joanne Tatam and Mum Maureen for all your help and Reece and Thomas for the lovely baby items you donated for the Raffle.

Nicky Howe for all your help

All the people that donated Raffle Prizes and Auction Prizes, James Johnson for the helicopter ride, I dont know the final figure as yet but I will put on my face book

Thankyou to all the Lawyers for the wonderful prizes you donated, NHS workers for all you do to help us Mesowarriors I can go on and on but my main thankyou is to Lynne of HASAG, thankyou for all you do, it was great to work together as you are a Mesowarrior and you know how devastating it all is as you lost your wonderful Dad. You have the same passion to help all those that go through mesothelioma. Thank you and bless you xx

IF I have missed any one out sorry you can see just what an emotional night I had.

Dani Carter my wonderful Mesowarrior and a great friend xx

A photo with my Doctor he makes me smile xx

A Diary of a #Mesowarrior living with #Mesothelioma #asbestos — The good news and bad

I have tried to write my blog and keep it up to date but its so hard when things are not going right. There is a lot of happy exciting things as well so lets celebrate the good things.

Ray can see again without glasses Yes he has had his Cataract operation at last. We sneaked up last Saturday and his B/P was good and Blood Sugars were great and he disappeared from me wearing a shower hat with a cross marked over his right eye. Half an hour later he came out all smiles. It was a very thick cataract but that was because when a young boy he was hit in the eye so there was a scar as well to take off.

He couldnt see out of the eye under the plastic cover and for 2 days we were worried but then by that evening he could begin to see shapes and by the next morning he could read small words on the telly.

Now he has perfect vision and is so happy.

We were able to go to Canterbury Cathedral for the Graduation Day and we had been invited to a meal and then to walk in the procession through the Cathedral and sit with the Academics on the stage. It was wonderful to clap each student as they received their degree. Its been a hard time for them as they worked through the pandemic but they achieved.

There is a blurred picture of me here as we walked in and a couple of us right at the back on the stage on the left hand side but it wasnt about us it was about just being there.https://www.flickr.com/photos/universityofkent/albums/72177720300460862?fbclid=IwAR3KZkqo3r6l_q0JkpCTCsg5Aj0P_cz97eKqulWWkipJ1IadoJb-isARpUw

That was all the good news of the week

I went and got my bloods taken before we went to the cathedral and when i got home there was a phone message to say my chemo is cancelled due to a low blood count infact my immune system had collapsed.

I had a lovely phone call yesterday from my Oncologist and she has mentioned injections to give my Immune system a boost. She thinks I have had so much treatment and also the 4 years of chemo from 2009-2013 have taken their toil on my marrowbone.

So its recommended I have a lower dose and a scan next and if my bloods are picking up next monday.

I go along with that and see what happens next.

Im still positive thinking (well trying hard)

A Diary Of A Mesowarrior Living with #Mesothelioma #Asbestos— Action Mesothelioma Day 2022

Im here in the Office with a cant sleep wont sleep. 13 Years ago I was doing the same with Chemo and here Iam again.

Its been a wonderful Day at the Sittingbourne Science Park where DSK Environmental hosted the day.

We met so many lovely people that worked there and Mesowarriors came along as well, the best being our new recruit Joanne Tatam,s Grandson with her son in law who is just as cute as baby Hugo

I was being very good as I had my 2nd chemo only on Wednesday.

Im tolerating very well as Im in my 2nd week now its just tonight I cant sleep wont sleep.

Maybe because I kept myself going through a very long day.

We had a barbie and Joanne bought me a Icecream cone the first one for over 3 years and boy did I get in a mess. My nose ended up with ice-cream. It was great though.

So here are some of the photos

A good time was had by us all and we will be back next year

Thank you to everyone for your hard work but Especially Kirsty and Chloe also KSP for allowing the event to happen xx

A diary Of a Mesowarrior living again with #Mesothelioma #asbestos –Once again Mr Nasty has got off the ground and we are back in the boxing ring.

Good morning I cant sleep so up at 4am but feeling good after Day 1 of chemo.

Yes Im back in the clutches of Chemo again. Gem/Carb is the regime which Im hoping will be kinder to me than Cisplatin/Almeta.

My last scan in showing that Mr Nasty is really going the battle and is winning as he showing in places out side the lung and other organs so its time to knock him back so Im back in the ring again, dont worry I wont be knocked down and counting to 10.

I had my bloods done on Monday and yesterday we arrived at Cathedral Ward at 8.30 where I was given steroids and this has changed in my 13 years of treatment, as now you are given 4 tablets and have to also take 4 each morning for 4 days together with a sickness pill and not spread out through the day 1 times a day which is good as steroids do make you over active so you cant drop off to sleep at night.

The Gem/Carbo is given together on day one so it took up to lunch time to put it into my veins.

Ray wasnt allowed to sit with me there are no chairs for the carer because of COVID but he was allowed to keep popping in and bought me a diet coke and also to see how I was getting on. He sat in the new Garden and then had a sleep in the car but the time dragged for him.

I read through my phone and Facebook but I did try to sleep but that was impossible, I people watched until the last drop of chemical was in my veins.

I have my appoint meant for next Monday for bloods to see if Im ok to have just Gemcitabine and then my next pre chemo is July 11th for Gem/Carbo on July 13th and thats how the appointments settle down. for 4 months, 6 months if needed and can be tolerated.

But I have a full diary so I will not stop raising the awareness to Asbestos and the disease it causes and I have a Foundation to run so no time to be worried that I have cancer. I have just lost my older brother to the disease only last month so I have a duty to carry on so my younger brother doesnt loose me.

I will blog this new journey promise!!

A Diary Of A Mesowarrior Living With Mesothelioma– Asbestonomy Conference #asbestos #mesothelioma

Ray and I travelled to London to our first event, after the Lockdown, which was very exciting.

I had been asked to attend this new event by the French organisers that have bought so many people together to share their knowledge of Asbestos and I was there to represent the Disease it causes.

The conference started

SPEAKERS

Charles Pickles

Sean Fitzgerald, PG 

Dr. Yvonne Waterman

Martine Chouvet

Hugo Rosati

DR Mavis Nye BEM BCAh

Benoît Lanlard

Santiago Jimenez

Nikolaj Villumsen

Sven De Mulder

Simone Stevenson

Andrew Paten

Graham Gould

Olivier Pla

The Program was

16th – 5.15 pm I Welcome party

An evening of exchange and networking, followed by a projection of BREATHLESS, the film.

“After the death of his father and many others in his village in Flanders, filmmaker Daniel Lambo embarks on an exciting quest to uncover the truth about the dangerous asbestos industry. His research takes him to the largest open-air asbestos dump in India and reveals a compassionate industry that still endangers the lives of workers and consumers around the world. A fascinating film about the struggle of human beings against an industry that is still growing.”

Such a moving film that really explains the horror of Asbestos in India https://www.youtube.com/watch?time_continue=9&v=TbpAtGEZWi4&feature=emb_logo

17th – 8.30 am I Asbestos State of Art

17th – 11.00 am I Asbestos Detection

17th – 2.30 pm I ACM Digital Management

17th – 5.00 pm I ACM Removal and Waste Innovation

It was two days of wonderful and I cant put it any better than Andrew Patens summing up :- It really was an incredibly humbling experience to be sharing the stage at the international ASBESTONOMY conference last Friday with so many world experts, in front of an audience with the great and good of the asbestos world. But what was so fantastic was the hope and sense that if we work together we really can make a difference. Thanks to everyone for a super conference and making this possible. So much to share, learn and do, together!

My very emotional speech from the heart https://www.youtube.com/watch?v=CS4D4Tn2Wqs

Robin Bennet and Andrew Paten receiving their Book from Yvonne Waterman

Robin Bennet was given a copy of Yvonne Watermans Book that she published he said Quote

I was honoured to be presented with a copy of Eric Jonckheere’s extraordinary book – “My War With The Devil’s Dust” – by leading anti-asbestos campaigner, mr. dr. Yvonne Waterman.

Eric wrote the book to record the deadly impact that asbestos has had on his family, and along with his documentary film, Breathless, it formed a moving and powerful story which I will be sharing with the whole Alpha Tracker team.

Yvonne replied :-

Thank you, Robin! Being the publisher and a friend of Eric’s, I may be prejudiced, but I really think the book is a huge advance in raising awareness and so very motivating for all of us to do our bit in creating safer workplaces, homes and the environment. Once you have read Eric’s poignant autobiography, you’ll understand why we all do our advocacy like never before.

Shield Services Group was represented by Celena Perry and Daniel Rogers who found the event to be informative and highly motivating. Here’s to 2023!! Thanks to Hugo PEREZ for arranging the tickets.
Sean Fitzgerald, PG  speaking on asbestos microscopy and different definitions of asbestos
sven de muldermr. dr. Yvonne WatermanCharles Pickles 
sven de mulder clearly explaining the high necessity for the massive asbestos eradication policy in Flanders –they are way out in front of the UK and we need to follow and catch up

Ben Chambers of Asbestos Hub Mr Charming himself

UKATA Craig and Debbie Ben Chambers and Wayne Asbestos Hub with Kirsty and Cloe DSK and also The Mavis Nye Foundation supporters

I have left so many off but to all those that I met a Huge Thank you Hugo and Philippe Perez for making the Conference so special for me and Ray. https://asbestonomy.com/

I have had my Pre treatment visit to the K&C Hospital and tomorrow I start chemo again but I know I have so many people egging me on I WILL GET THROUGH THIS. As I said I cant change my story but my story can change the world. Mr Nasty hasnt won yet -Promise.

A Diary Of A Mesowarrior living with #Mesothelioma #asbestos — A wonderful long Bank Holiday to celebrate the Queens 70 year reign

Its been a wonderful long weekend as its the Queens Platinum Jubilee and we have enjoyed every minute and today was our parks street party arranged by our dear friends Dawn and Martin. They have worked tirelessly to get it right for our neighbours.

Everyone has joined in and all had a great time.

We joined in at 2pm on the dot

Even my Garden pig was playing a part in a game Martin had arranged to have him on a mount of his own that we will now keep him on in the garden to remind us of the day all the neighbours came together to Celebrate.

It soon filled up and we had bingo and a quiz and Ray Gifford provided the music singing for us and Karaoke.

Our Site Manager saying thank to Dawn and Martin.

He doesnt want to come back home as he has been a star today.

Cake one we had to cut as it was our 62nd Wedding Anniversary today.

This was the second cake -so cleverly made.

Here is the link to Keat Farm as you too can down size and live on a friendly happy park. https://www.keatfarm.co.uk/

I have enjoyed this all so much everything has been perfect.

https://www.msn.com/en-gb/news/uknews/queen-lights-principal-beacon-as-ceremonies-take-place-across-the-commonwealth-platinum-jubilee/vi-AAY53FQ

The Queen lit the tree up watch the you tube video

Congratulations Your Majesty and thank you for all you have done and achieved in 70 years on the throne We love you so much.

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — Our Day at The Palace For The Queens Garden Party and then the Science Museum Cancer Exhibition.

Yesterday I felt like Christopher Robin. We had been invited to The Queens Garden Party.

So the day had arrived at last Dress bought Hat Bought so off we set.

We travelled in a taxi to the Palace from Victoria Station and met up with 7 thousand other wonderful guests. So many lovely outfits.

The gates open at 3pm and because we had walking sticks, so obvious disabled, we were ushered in first with other wheelchair users etc.

We all showed our passports and invitations then proceeded to walk into the garden.

We were shown chairs under the trees where we sat and people watched.

Listen to the Band

At 4 pm the Royal Family Party came out of Buck House, The Queen calls it the office, what an office, but then the heavens opened and it was so windy. This just didnt phase our wonderful Kate and William as with only an umbrella and no coat they strolled through the crowd. Everyone surges around them. It became difficult to see them but Princess Beatrice was away from the crowd chatting to everyone, she is very sweet just how I thought she was.

A gentleman asked me to talk to the Duke of Gloucester, he took my name asked why I was there. When I said Mesothelioma and Asbestos he said how that was how his Father died. We had a longer talk with him than the Duke.

As the time was getting on and I had to get to the science museum as the cancer exhibition reception was on as well and once again I had been invited, as I had my story and my DNA in the exhibition.

We went back to the gate on a Golf Buggy, just like the Queens so everyone was taking photos of Ray and myself so I gave the Royal Wave. This had people laughing and taking even more photos.

burst

We walked out the gates and found a taxi and entered the museum just as they opened the doors.

https://www.sciencemuseum.org.uk/about-us/press-office/major-new-science-museum-exhibition-cancer-revolution-will-open-lates

We had drinks and little canapés and the speeches to open the Exhibition. Debora James was supposed to be there but she is now so very ill bless her but I share her latest word here https://www.msn.com/en-gb/health/familyhealth/dame-deborah-james-scared-to-go-to-sleep-as-podcast-host-receives-end-of-life-care-for-bowel-cancer/ar-AAXKcFl?ocid=uxbndlbing

We walked all around the exhibition but couldnt find my story and another Mesowarrior friend said hers wasnt and she has been told there wasnt enough room so again Mesothelioma has missed out. We are both in the book so I will have to find that.

The Science Museum will open a major, free exhibition—Cancer Revolution: Science, innovation and hope—at a special edition of the museum’s popular after-hours, adults-only Lates event on 25 May. In partnership with Cancer Research UK, the exhibition includes objects that have never been displayed in the UK before. Visitors will experience the exhibition for the first time in London, encounter a new interactive artwork exclusive to Lates and take part in workshops and talks across the museum. 

Ray and I caught a taxi to Victoria Station to return Home. Shattered but so happy and It had been a wonderful day.

A Diary of a #Mesowarrior living with #Mesothelioma – Mental Health Awareness Week

The mental health charity Mind explains that loneliness is a personal feeling, so everyone experiences it in a different way. Living or spending time alone doesn’t mean someone is lonely. Many people experience loneliness despite having lots of friends or family around them. Loneliness is about what we get from our social interactions – whether we feel connected, rewarded and understood.

Feeling lonely from time to time is normal and isn’t a mental health problem. But research shows loneliness is associated with poor physical and mental health.

The theme of Mental Heath Week is loneliness. That was something I really felt when given the diagnosis of Mesothelioma back in 2009.

To be told you have 3 months to live and know you are going to leave this earth when you are not ready to go makes you feel so lonely. Then you feel so lonely when your told its terminal, no cure, makes you feel so unwanted and lonely and you realise that there is not enough research into your disease. So what you have to do is pull your big girl knickers up and shout, shout for backing and shout to raise awareness and be heard.

So lets put a hand out to people and ask the question are you OK today. Do you want to chat. or just lets sit here and watch the birds as they collect the twigs to make a nest or pick up ants to feed their young. Watch the lambs dancing and prancing in the field.

I did sit in the garden and watched the ants coming out of a hole in the earth and returning again.

Life is too short so you have to enjoy each day believe me I know x

https://commonslibrary.parliament.uk/mental-health-awareness-week-2022-loneliness/?msclkid=a9634befcfa611ec8aab3b8a53e73ac7

https://localgiving.org/donation/the-mavis-nye-foundation

A Diary Of A Mesowarrior Living with #Mesothelioma #asbestos Vandals must be aware of Asbestos

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Cllr John Birch at the former Dairy Crest site (. )

A growing problem with vandals today is the fact they do not seem to be aware of the danger they put themselves in.

Schools should talk to young people and warn them that when they break into a building they run the risk of coming into contact with asbestos. They cant see it but it will be drawn down into their lungs and also stick to their clothes where they will take it home and contaminate their mothers as they wash the clothes and also their siblings as they play with them.

It wont show for years but it will show as it causes mesothelioma and their lungs are in danger.

This story published yesterday is a great example and should be heeded.

A derelict site in Totnes with buildings containing deadly asbestos is a threat to the health and safety of young people who regularly gain access, warns a local councillor.

Cllr John Birch has accused Fastglobe of abandoning the former Dairy Crest site with no regard to the safety of the community.

There has already been one fatality at the former processing plant. Student Ethan Bonnar, 22, of Torquay died after falling from the roof in July 2020.

The site, next to Totnes Railway Station, has been empty since Dairy Crest closed in 2007. Fastglobe bought it from the new owners Saputo in January 2001 but has yet to start any development on the land

Cllr Birch, Totnes ward councillor at South Hams Council, hailed the site a “dangerous eyesore” and says Fastglobe has ignored its statutory obligations to make the area safe.

He said: “My major concern is the willingness of Fastglobe to allow youngsters access to the site, on which they clamber in and out of derelict buildings that are are contaminated with asbestos and other dangerous materials and hazards.

“The gaps in the fence surrounding the site present an open invitation to youngsters to explore it, not knowing what dangers are surrounding them, and at times the entrance gates have been left open.”

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Open gates at the former Dairy Crest site. (. ) (.)

Cllr Birch says ‘urban explorers’ have uploaded a “rash” of YouTube videos of the site since Ethan died, including one in May last year which shows a group of people walking around freely, and another a couple of weeks ago showing youngsters easily accessing the insides of buildings.

“These videos make a nonsense of the idea that these buildings are kept secure, or that the site is in any way secure from people getting in.

“Evidence of easy accessibility takes the form of widespread graffiti throughout the building that encourages visits by other graffiti artists who too put themselves in danger.

“There has already been one fatality and yet this seems to have been ignored by Fastglobe.”

Life Environmental carried out an asbestos survey of the site in 2015 and identified three buildings containing Asbestos Insulation Board (AIB).

The risk assessment firm recommended access should be prohibited to these buildings.

Totnes Community Development Society subsequently boarded them up but Cllr Birch says since this time the condition of the AIB will have deteriorated and released more lethal fibres, spreading the contamination around the site.

He said: “Exposure to asbestos fibres, which are known to be present, can lead to longterm health problems resulting in death.”

Cllr Birch listed a number of responsibilities Fastglobe has to the site, under the Control of Asbestos Regulations, which include assessing the risk of anyone being exposed to asbestos fibres, and preparing a detailed plan for managing the risks posed by asbestos containing materials.

“It is feared that the owner of the site is neglecting its responsibilities and in consequence putting youngsters lives at risk,” he stated.

Cllr Birch says he will talk to South Hams Council offers to see what steps can be taken to prevent any more accidents and possible deaths occurring on the site.

He also slammed Fastglobe for allowing the site to decay, accusing the glue firm of giving up on the site, leaving Totnes “saddled with a dangerous and unsightly mess.”

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Graffiti at the former Dairy Crest site can be seen from the railway (. ) (.)

Totnes land agent, Patrick Gillies who is leading the Brunel Park Partnership, formed to oversee Fastglobe’s multi-million pound plans to transform the site into a mixed development consisting of a creative community hub, housing, holiday park, shops and business units, insists the site has not been abandoned.

Fastglobe aims to submit an outline planning application for the whole site later this year, he said.

Since acquiring the site, Fastglobe has carried out clearance work to provide maintenance access to the leat, ecological surveys, some essential health and safety works, and is working on a major flood modelling project with the environment agency.

Mr Gillies added: “Where we agree wholehearted with Cllr Birch is that the site is an eyesore in desperate need of regeneration.

“That is why we continue to work hard on bringing forward a viable, transformative scheme for the benefit of the local community.”

https://www.totnes-today.co.uk/news/asbestos-fears-over-derelict-site-that-attracts-young-people-546155