A Diary Of A Meswarrior Living With #Mesothelioma #Asbestos -Talking at 3 Conferences What a Week

 

 

 

 

 

 

 

 

 

 

 

What a week.

We set off last Thursday after dropping Louis to the kennels.

He does seem to love it there and runs in to greet the lovely owner and all the kennel maids who make a fuss of him. So many dogs there as it is still a busy time with owners off on holiday so he had many to talk to.

We travelled to London and then tube to Paddington for the reading train and that all went very smoothly.

We arrived at the IBIS hotel I was enthralled with the bathroom as it was a unit in the corner of the bedroom.

 

 

 

 

 

 

We had to go off to meet our Mesowarriors as I had arranged with Pam to go out for a meal(she insisted on paying )

Out for a nice evening with Mesowarriors

 

 

 

 

 

 

 

Pam and Leigh

 

 

 

 

 

 

 

We had a great meal out and caught up on all the news.

Next day we went to Boyce Turner as I had been asked to talk.

The banner is up

 

 

 

 

 

 

 

Boyce Turner

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Mesothelioma and Lung Cancer Study Day
Friday 22 September 2017, 9.30 am – 4.30 pm
PROGRAMME
09.30 Welcome (Chairperson) and refreshments
09.45 Dr Stephen Ellis
Consultant Thoracic Radiologist
“The radiology of asbestos related diseases and their mimics”
10.25 Dr Sam Hare
Consultant Chest Radiologist, Royal Free London NHS Foundation Trust
“Ambulatory Lung Biopsy – a new model for the UK”
11.10 Break
11.20 Scott Bentley
Operations Director, Resource and Environmental Consultants Ltd
“Asbestos in the workplace”
12.00 Simon Levene
Barrister, 12KBW
“What happens in meso litigation from the patient’s perspective?”
12.40 Lunch
1.25 Anne Moylan
Clinical Nurse Specialist, Mesothelioma UK
“Trials in mesothelioma care”
2.05 Mavis Nye
Surviving mesothelioma victim
“The Mavis Nye Foundation”
2.50 Break
3.00 Jane Canavan and Charlotte Merriman
SOLACE
“Thoracic Surgery Rehabilitation”
3.40 Dr Alan McKenna
Associate Law Lecturer, The University of Kent
“A critical analysis of issues across the asbestos spectrum”
4.20 Closing comments (Chairperson)

It was soon all over and we went back to the hotel room next day we travelled by train and surprised my Brother and SIL. We had a good chat and the time soon went as we had to get back to meet friends for the evening.

 

 

 

 

 

 

 

He still looks shocked xx

We then travelled to Waterloo and then travelled on the Jubilee line to Canary Wharf to settle into the Britannia Hotel.

 

 

 

 

 

 

 

Caught a taxi to Covent Garden to meet Yvonne Waterman  and Geoff Fary
Former Chairman of the Australian Asbestos Safety and Eradication Council

Had a lovely meal in a nearby restaurant and returned to our hotel tired but happy x

http://www.europeanasbestosforum.org/speakers-2017/

 

 

 

 

This was a heavy 2 days but we worked our way through all the speeches. Lucky I was early and once again I was happy with my talk.

Program 2017 ‘Asbestos & Industry’ – 25 & 26 September 2017, Hilton Canary Wharf Hotel, London

On Monday 25 September 2017, the EAF conference will host ’round table’ workshops in which participants will meet many speakers face to face and freely discuss in-depth on a wide variety of asbestos related topics. This has proven to be the ideal formula for meeting relevant specialists, exchanging knowledge and building up lasting networks.
A delicious buffet lunch is included and will be open from 12:30 to 13:30 hours, after which the workshops will go on until 16:30 hours.
On Tuesday 26 September 2017, the EAF Conference will take place, concluded by an optional conference dinner. Please note that speakers and presentations may be subject to change. See below for further details.

08.30 – 09.00
Registration and light continental breakfast
09.00- 09.15
Welcome by Yvonne Waterman (EAF Foundation)
Introduction of the Conference Chairman, Hans van der Wart (KIWA Compliance International), and Session Chairmen Mark Winter (Beacon International) and Ron Symonds (Royal Mail Group)

Plenary Session
09.15 – 09.45
Opening Speech, by Dr. Penny Woods (British Lung Foundation)
09.45- 10.05
Are Frameworks killing quality? Matthew Timms (Silverwood Ltd.)
10.05 – 10.30
A Mesowarrior’s Journey, Mavis Nye BCAh (Mavis Nye Foundation)
10.30 – 10.45

 

 

 

 

 

 

 

 

 

 

 

 

Break and refreshments
10.45 – 11.15
Shaken and stirred: asbestos response after natural disasters, Terry Coleman (Coleman Consulting Ltd New Zealand and Pacifica Environmental Ltd Fiji)
11.15 – 11.45
Keynote Speech: Role of a Trade Association in the Asbestos Removal Industry, Stephen Sadley (ARCA)
11.45 – 12.45
Buffet lunch

Photo exhibition by Tony Rich (Asbestorama)

Session A
Asbestos and its impact on society
12.45 – 13.05
Asbestos and its effect on English society, Harry Steinberg QC (12 King’s Bench Walk)
13.05 – 13.25
Challenges for insurers regarding asbestos in industry, Christian Lahnstein (Rachel Carson Center, University of Munich)
13.25- 13.45
Raising asbestos awareness in the workplace, Jasper Kosters (Admanstars)
13.45 – 14.05
Real risk versus perceived risk, prof. Roger J. Willey (UKATA)
14.05 – 14.20
Break and refreshments
14.20- 14.40
Building national consensus around asbestos management – the Australian experience, Geoff Fary (former Chairman of the Australian Asbestos Safety and Eradication Council
14.40 – 15.00
The Portuguese approach to asbestos in industry, Ana Nogueira (Portuguese Dep. de Saude Ambiental, Unidade de Ar e Saude Ocupational)
15.00 – 15.20
New developments in the treatment of Malignant Mesothelioma, prof. Nico van Zandwijk (former Director of the Asbestos Diseases Research Institute)
15.20 – 15.40
Asbestos still kills – what difference can YOU make?, Colette Willoughby (BOHS)
15.40- 16.20
Panel debate
16:20 – 16.35
Break and refreshments
Session B
Asbestos & Professional perspectives
12.45 – 13.05
Complex projects for a simple product, Hein Tersteeg (Asis-t, active for ExxonMobil Rotterdam)
13.05 – 13.25
Removing asbestos in a nuclear environment, Mark Winter (Beacon International)
13.25 – 13.45
The Global Game Changer, Dale Timmons (ARI Global Technologies)
13.45 – 14.05
Compliance in industry, Dr. Martin Gibson (HSE)
14.05 – 14.20
Break and refreshments
14.20 – 14.40
Delivering ‘real reassurance’ asbestos air testing, Charles Pickles (Lucion Services Ltd)
14.40 – 15.00
Putting asbestos policy into practice at a major airport, Jeroen Kersten (Sodexo)
15.00 – 15.20
The global asbestos industry and the worldwide pursuit of justice, Brendan J. Tully (Phillips & Paolicelli LLP)
15.20 – 15.40
The summit of the bell curve: UK asbestos litigation, Malcolm Keen (BLM Law)
15.40 – 16.20
Panel debate
16:20 – 16.35
Break and refreshments

Plenary session in the Grand Ballroom
16.35 – 16.40
Special Recognition Award
16.40 – 16.45
Concluding speech, Yvonne Waterman and Hans van der Wart (KIWA Compliance International)
16.45 – 18.00
Convivial closing drinks for networking
18.00 – 21.00
Optionally: Conference Dinner
EUROPEAN ASBESTOS FORUM FOUNDATION
The foundation aims to improve international relations and knowledge regarding all matters related to health and safety, asbestos in particular. The foundation was founded in 2014 by Yvonne Waterman Ph.D. LL.M., who serves as its President.

Welcome to the 3rd EAF conference on 26 September 2017: ‘Asbestos & Industry’
Location: the Hilton Canary Wharf Hotel on South Quay, Marsh Wall, London. Dates: 25 September 2017 (workshops) and 26 September 2017 (conference)
This year, we will examine many aspects surrounding the main topic: asbestos in industry. What does this mean to society, to the economy, the environment? What are the problems and the solutions to share in this regard? Speakers from across Europe, the United States, Australia and New-Zealand will give exciting and very varied presentations.
Many professional organisations are contributing speakers to the conference: HSE, ARCA, UKATA, TICA-ACAD, etc. The presentations will be very practical and challenging, such as removing asbestos in a nuclear reactor (Beacon) or a petrochemical plant (ExxonMobil) or how to change asbestos waste into a safe product (WISG). There will be top-level lawyers from England and the United States to provide a legal perspective, as well as speakers to provide an insurance or medical view on the latest developments. The accountancy firm BDO will explain how to save money when removing asbestos in industrial sites; and so on!
While the EAF is focused on professionals of all kinds, asbestos victims organisations are welcomed, too. Indeed, the British Lung Foundation and Mrs. Mavis Nye BCAh, England’s most well-known asbestos victim, will give thought-provoking presentations as well.
If this brief line-up is not already sufficient reason to attend… Consider this.
The European Asbestos Forum strives to improve professional networks and the exchange of the very best and newest knowledge regarding all matters related to asbestos – across borders and sectors. Sharing the best innovations, the newest insights, the best practices. Learning from each other’s mistakes and successes. This is where you truly learn more about asbestos and make useful new contacts to bring your own work to a higher level.
Meet your national and foreign colleagues and become part of the international asbestos network for professionals: the European Asbestos Forum.

Thank you Yvonne for all hospitality it was a very successful conference even if I did pinch your phone

 

 

 

 

 

 

I will blog the Contamination Expo tomorrow as you can see It has been a really full week with so much travel involved

All the speakers on the stage

EAF From Holland

The Work shops

A Mesowarrior Living With #Mesothelioma #Asbestos — A Skip full of Asbestos Roofing Greeted us On Saturday.

Can you imagine how we felt when just around the corner from us we were met with this skip. So much Asbestos a layer of soil is hiding more sheets of the shed or garage roof.

Ray saw red as I posted a letter and he spotted it first. What utter madness. Asbestos from a roof broken and open to the elements with Asbestos rope.

We are fighting a loosing battle trying to get through just how dangerous asbestos is.

It was the weekend so there was nothing we could do so I put a picture on the local towns forum.

Firstly the conversation was it wasn’t asbestos it was cement.

Can I remove asbestos roof myself?
While there are no legal restrictions in you doing so, it is advisable that you do not remove asbestos roofs on your own. Instead, hire a reputable contractor who will ensure that the materials are properly removed and disposed of. Find a UK contractor here.

One of the widest uses of asbestos in the building industry was in roofing. Due to its heat and fire resistant properties asbestos was added to many roofing products including roofing tiles.
Asbestos tiles did not comprise solely of asbestos. Asbestos roofing tiles are actually largely made from cement, with the now banned product added into the cement mixture. Depending on the manufacturer, the cement tiles comprised typically of between 10-15% asbestos.
In addition to its heat and fire resistant properties, asbestos has excellent strength and durability features. New homes built prior to 1970’s with asbestos roofs, were lauded for the longevity of their roof systems, as the roofs had a life expectancy of 30-50 years.

Having or buying a home with asbestos tiles does not mean you need to remove the tiles especially if they are still in good health. If you know or suspect you have cement asbestos shingles, it is advisable that you monitor your roof to check for its health.
If you are planning renovations or if indeed the roof becomes damaged or begins to deteriorate, the roof may need to be removed and replaced with safer non-asbestos containing roofing products.
Asbestos roof removal cost
As asbestos cement is considered a relatively low risk asbestos material you do need not a licensed contractor to remove it. However, it is advisable that you use a competent and experienced contractor who is aware of the guidelines associated with its safe removal and disposal.
The costs of asbestos roof removal vary greatly depending on the configuration and size of the area that needs to be cleared. It is advisable that you hire a technician or specialist to conduct a survey. Expect to pay several hundred pounds for the survey. The survey will provide you with the information you need to obtain an estimate for the costs of removal. By way of a rough estimate, expect to pay several hundred pounds for the removal of asbestos roofs from garages, and up to a few thousand pounds for removal of asbestos roofs on houses.

The people on the forum were more worried about  getting the builder into trouble and his loosing work than the fact that the builder has taken this roof down with no protection so endangering himself to Mesothelioma 20/30 years down the line. Taken fibres home on his clothes for his partner to wash, and then maybe cuddle his children so harm his family.

The wind is blowing and people are passing this skip.

I was advised by a man to take the picture off until I had proved it was asbestos.

I gave up and asked my expert friends and they took it more serious.

Inside
A. Asbestos cement Water tank
B. Pipe lagging
C. Loose fill insulation
D. Textured decorative coating eg artex
E. AIB ceiling tiles
F. AIB bath panel
G. Toilet seat and cistern
H. AIB behind fuse box
I. AIB airing cupboard and/or sprayed insulation coating boiler
J. AIB partition wall
K. AIB interior window panel
L. AIB around boiler
M. Vinyl floor tiles
N. AIB behind fire
Outside
O. Gutters andAsbestos cement downpipes
P. Soffits – AIB or asbestos cement
Q. AIB exterior window panel
R. Asbestos cement roof
S. Asbestos cement panels
T. Roofing felt
*AIB = Asbestos Insulating Board

I gave him the name on the skip and he emailed to them. Today the company has made the builder cover the skip and is going to remove it in a couple of days.

So everyone has been made aware people do care and they should make sure they do the work properly. The HSE has all the advice so there is no excuse

http://www.hse.gov.uk/pubns/guidance/a14.pdf

Preparing the work area ˜ Ensure safe access – you may need a mobile access platform. ˜ Restrict access – minimise the number of people present. ˜ Close doors. Use tape and notices to warn others. ˜ Ensure adequate lighting.
Equipment ˜ 500- and 1000-gauge polythene sheeting and duct tape ˜ Warning tape and notices ˜ Bolt cutter ˜ Webbing straps and rope ˜ Garden-type sprayer containing wetting agent ˜ Bucket of water and rags ˜ Asbestos waste bag ˜ Clear polythene bag ˜ Lockable skip for larger quantities of waste ˜ Asbestos warning stickers

Personal protective equipment (PPE) – see sheet em6 ˜ Provide: ˜ disposable overalls fitted with a hood; ˜ boots without laces (laced boots are hard to decontaminate); ˜ respiratory protective equipment (RPE).
Procedure ˜ Check with the premises owner that only AC is present. ˜ Protect nearby surfaces from contamination. Cover with 500-gauge polythene sheeting and fix with duct tape to non-asbestos surfaces. Overlaying AC sheets ˜ Can you overlay sheets with non-asbestos material instead of removing the AC? ˜ If so, attach the material to existing purlins. Avoid drilling through the AC. If you cannot avoid drilling, see sheet a9.
Removal ˜ Avoid or minimise breaking the AC. ˜ If fasteners hold the sheets in place, dampen and remove them and place them in the asbestos waste bag. ˜ If the sheets are bolted in place, dampen and cut the bolts while avoiding contact with the AC. ˜ Remove the bolts or fixings carefully and place them in the asbestos waste bag. ˜ Unbolt, or use cutters to release gutters, drain pipes, ridge caps etc. Avoid contact with the AC. ˜ Lower large pieces to the ground. Don’t drop them or use rubble chutes. Stack sheets carefully. ˜ Where there are several AC sheets and other large items, place them in a lockable skip.

Double-wrap large pieces in 1000-gauge polythene sheeting. Seal with duct tape. ˜ Attach asbestos warning stickers. ˜ Place small pieces in the asbestos waste bag.
Cut the bolts while avoiding contact with the asbestos cement. Double-wrap large pieces in 1000-gauge polythene sheeting and seal with duct tape
Cleaning and disposal ˜ Clean the equipment and the area with damp rags. ˜ Check for debris in fasteners or bolt holes. Clean with damp rags. ˜ Put debris, used rags, polythene sheeting and other waste in the asbestos waste bag and tape it closed. ˜ Dispose of contaminated webbing and rope as ‘asbestos waste’. ˜ Put the asbestos waste bag in a clear polythene bag and tape it closed. ˜ Disposal – see sheet em9.
Personal decontamination See sheet em8.
Clearance and checking off ˜ Visually inspect the area to make sure that it has been cleaned properly. ˜ Clearance air sampling is not normally required. ˜ Get the premises owner, dutyholder or client to check off the job.

To be honest having read this it seems every rule has been broken and I fear for their health. When will we ever get through to people just how dangerous Asbestos is.

If you find asbestos contact the experts

https://www.allpro-environmental.uk/asbestos-advice/

A diary of a #mesowarrior living with #mesothelioma – A visit to Cicely Saunders Institute Kings College Hospital

Off to London again yesterday and on the way the talk on the train was that news of a bombing on the underground  had come through.

Lucky we wasn’t using the underground as we pulled into Victoria and walked to the train to Denmark Hill.

We were on our way to Kings College Hospital. Wow we think our hospital is large but it is tiny compared to what was in front of us as we arrived. 

It was like walking through a town with so many people. How on earth do they control a hospital as large as this.

We were on our way to the Cicely Saunders Institute as both of us were invited to talk about Patient Carer, but to be honest we didn’t know just what it was all about. Ray just trusts me that I know and I truly didn’t know.

A key objective of Cicely Saunders International is to establish the world’s first institute of palliative care, a centre of excellence housing research, education, information provision and clinical care. The Cicely Saunders Institute of Palliative Care brings together academics, healthcare professionals, community organisations, patients and carers in one centre and acts as the hub for a network of international research. By providing a comprehensive approach to the physical, social and psychological needs of people with progressive illness, the Institute’s research will feed quickly and directly into practice and policy around the world – improving palliative care and enabling people to live better, with dignity and the least possible suffering.
The Institute opened in February 2010 and is situated next to King’s College Hospital, which currently provides high-quality palliative care for patients in South East London and the surrounding area. The Institute integrates this care with teaching and research, creating a multi-professional environment examining every aspect of palliative care.
King’s College London, our academic partner at the Institute, is the largest provider of healthcare education in Europe and has an international portfolio of research. Its Department of Palliative Care, Policy and Rehabilitation has an international reputation for teaching and research. The multi-faculty nature of King’s will ensure that the profile of palliative care research and education is truly multidisciplinary and will reach a broad audience.
The building is a welcoming and peaceful environment, sensitively designed with advice from Macmillan Cancer Support and in consultation with potential users and local patient groups such as Black Cancer Care. Ongoing user involvement should ensure that patients and their carers are able to guide and participate in our vision for the Institute and its future use.

We met another couple waiting and we soon were met by Jo and taking up to the top floor where we could see the Shard in the distance.

Here we had coffee as another 2 people arrived.

Jo wanted us to talk about who we were and our stories and to interact with each other. Turns out she couldn’t have chosen a better group of people as we all interacted very well.

We had to give our thoughts on Palliative Care at an early stage.

I said I would ask the Mesowarriors and I did last night.

The question raised to-day about Palliative care.
If they run a trial to see if Someone ran a group at your hospital of Exercise, Diet and Breathing Exercise etc etc a general keep healthy and fit when we have been diagnosed, when would you feel it was a help. At Chemo time each time, at home would you even take part.

The Mesowarriors have responded so well

 I realise being in Australia is different
Yet my beautiful dad went into palliative care 2 nights before he passed on the 3rd. I was allowed to stay with him the whole time.
He had a daily palliative care nurse visit at home, where my stepmother cared for him, as I’m 5 hours away.

 It depends on what they do . I think you need different things at different stages so I probably would take part if they were offering something useful for me at that time

 My Dad has been offered all of the above by our Macmillan Nurse. He can go along to learn breathing techniques. He’s got a 12 session FREE gym member- including a one-to-one to sort out his training schedule and a carer/friend of his choice can also go along for free each visit too (carer can be different each time 👍🏽). We are in East Hertfordshire. I think the best time would be when first diagnosed as the lung cancer be trained to keep fitter ready for the rocky road ahead xxx
·

Anytime towards the beginning of treatment would have been helpful. A couple of weeks after surgery would have been a big help.

 I would say an exercise programme from the start that will need to be monitored & adjusted depending on treatment & symptoms. Would suggest in groups (good social) aswell as individual at home. It has been a massive help to me both mentally and fitness wise. I’m fitter now than I have ever been …

I Am on present time at home I could not take part in any fitness group.

 Yes, I agree . So far I’ve been offered armchair yoga at the hospice and I look forward to it every week, it does help me.

Mavis Nye
Group Admin
Oh brilliant I will send these answers through. Its what I say I would love to have had someone come and help me exercise and talk about diet and nutrition when I was sitting for hours on chemo. We spend so much time then reading I think I could have done armchair exercise to keep my muscles in trim.

Agreed!

There was a clinical trial of exercise listed for Meso. For me exercise has been extremely important. Physically and mentally. This has been an area that i have not had any advice on at all.. am thinking it maybe uncharted territory for the oncologists. I find that during exercise my lung performance increases.. but boy i have to work hard to get to that point. After each exercise i always feel better.. but trying to find that rest/exercise balance is trial and error.. for me it’s quite a fine line. Also exercising isn’t conducive to maintaining and gaining weight. When to exercise after treatment seems to be important as well. I’ve only done cardio exercise, be good to start doing weight based training too. I was put off exercising initially as a private nutritionist maintained that meso is an oxygen based cancer and would enhance the tumor..i did query this with a trial doctor who said this isnt the case.

Keith Hughes I asked about what exercise programmes were available when I first saw my Oncologist and I was referred for pulmonary rehabilitation training. Now I chose surgery but I felt it helped me a lot both before and after the surgery. I am now looking to join a maintenance group. I don’t know how this works with chemo as I suspect one is less motivated to exercise after such treatment but, if it is part of a group or combined with hospital visits then, that can only be a good thing.

My Dad was offered this in Hereford when staying with me , as a day patient at local Hospice and from memory I am sure they offered something similar in Newcastle x

 I would take part if it was offered. I am looking at going to a Lung Smart Exercise at a gym. I think a supervised exercise regime would be a big help.

I have sent the answers in as It adds to the day where similar answers were given.

The Afternoon soon went and even Ray had enjoyed the conversation and had told it as it is for a carer.

Jo really did learn so much from us.

We had to say goodbye with a promise to keep in touch through Social Media.

The journey home was easy although even at 2pm the trains were so packed.

 

 

A Diary of A Mesowarrior Living With #Mesothelioma #Asbestos My blog on Irwin Mitchell’s Pathology and Inquests in Asbestos Related Deaths Conference.

Its been a wild week this week.

Tuesday we set off for London the train got so far then we slowed right down and was told by the guard that a tree was down. We waited half an hour then we were told that the men hadn’t even got to the site to deal with it so we would return back to Rochester.

We did this and decided that no way would we make our appointment at Lombard Street so we made our way home again.

What a waste of time.

Thursday saw us off to the Bridgewood Hotel for the Irwinmichell Pathology and Inquests in Asbestos Related Deaths.

Ian Bailey soon put me at my ease. I didn’t know what to expect but we all gathered laughing and hugging with old and new friends and had coffee.

Larraine Creech spoke about the Mesothelioma UK Nurses.

Dr John Moore-Gillion from St Barts  Talked about Asbestos Related Disease clinical Investigation and the relevance from a medico legal perspective.

Consultant Physician St Bartholomew’s Hospital 1988 – 2010, now Emeritus Consultant Physician at Bart’s and Royal London Hospitals and in independent medical practice at King Edward VIIs Hospital and The London Clinic.

Expert Witness in cases involving occupational lung disease including asbestos-related conditions, silicosis, coal mining and other aspects of respiratory medicine.

Has prepared reports in over 4,000 individual cases, and in class actions involving up to 500,000 claimants. Expert in four cases which have reached House of Lords/Supreme Court, and others to Court of Appeal. Medico-legal practice is international, and in the past three years has advised on the management of multi-claimant actions on four different continents. Author of over 50 book chapters, invited review articles and original scientific research papers.

Dr Richard Attanooss spoke about Pathology in Asbestos related disease.

Consultant Pathologist at Cardiff and Vale UHB
DR. RICHARD L. ATTANOOS, M.B B.S., F.R.C. Path. qualified in Medicine in London in 1987. He is a practising Consultant Pathologist in Cardiff, and Head of School of Laboratory Specialties (Associate Dean) at Cardiff University, Wales, U.K. He has a special interest in occupational and environmental pulmonary pathology, especially asbestos related disease and mineral fiber analysis.  Dr. Attanoos is an invited member of the International Mesothelioma Panel and Asbestosis Guidelines Committee of the College of American Pathologists-Pulmonary Pathology Society. He has over 120 scientific publications, 27 book chapters and one book ‘Mesothelioma’. Dr. Attanoos has served as contributing author for the 4th Edition of the International Agency for Research on Cancer / World Health Organisation Classification of Tumours of the Lung, Pleura, Thymus and Heart (subsection Malignant Mesothelioma). He has advised both the All-Party Parliamentary Committee of the British Government and Welsh Assembly on the Health Effects of Asbestos.

After a break it was the turn of a lovely lady who told the story of her husband’s death and the way she was spoken to and things that went wrong. It was a very sad story of her husbands PM and she wasn’t kept up to date with what was going on.

My heart went out to her..

Then it was myself Ian Bayley interviewed me as we sat in front of everyone. No Notes just a good honest Question and Answer to get my story across and he asked me all about the Mavis Nye Foundation and the Launch which he has booked a table for.

Lunch Cam Next and it was one of the best we have had at these Conferences. Ray was able to eat which makes a change.

Back in the room it was a Stakeholder Panel Discussion. Current Experiences and Learning Points.

• Communication around asbestos related deaths • Obligations to investigate • What to expect at the inquest. How to prepare and cope on the day

Michael Rawlinson QC Barrister from 12 Kings Bench walk London spoke about The use of evidence from Post Mortems in Compensation claims.

Michael has been involved in a number of GLOs in the past including both Coal Mining Schemes, the ‘Toxic Sofas’ litigation. More recently he has been instructed by a number of insurers in combination to seek contribution to their asbestos-related outlay arising under Employers’ liability policies, against the historical manufacturer of asbestos boards.

Legal attribution of the death to asbestos: Mesothelioma, lung cancer and asbestosis • Use of the post mortem to establish life expectancy, but for the mesothelioma • Why defendants might insist on Post Mortem

Another refreshment break. I needed it this was very hard going. Law has so many words I don’t understand so you have to concentrate to  keep getting through.

 Patricia Harding, Senior Coroner for mid-Kent & Medway
The current practice in asbestos related death • The inquest hearing and the involvement of the family • Evidence available for inquest – When is fibre analysis helpful? • Inquests in the context of litigation.

I learnt the White Asbestos is clumped and that breaks down within 100 days  and disperses and passes right through so at a PM no fibres are seen hence this is why it is said white isn’t dangerous but it is as it has caused a cancer to start and grow.

Amosite  is retained for  20years and Blue is  7/8 years.

I also learnt that I will not need a PM as I have records of Mesothelioma but I’m not able to claim so this helps the Coroner to say a PM is not Necessary. Ray is so relieved to hear this.

Radiation can cause cancer was noted so I wonder if a patient that had Breast Cancer should have Radiation?

Wow what a Conference.

Well its late so I will write about today tomorrow and say good night

 

 

 

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Rays Radiofrequency Denervation on his back.

This weekend has been all about Ray as we went to Margate Sunday (yes Sunday ) for  his back operation. We entered an empty day centre and our feet echoed down empty corridors.

We followed the signs to up stairs and found the ward. Reception all closed no one around except we could her voices so we walked until we found the owners and came across the nurses.

We were greeted and Rays name was up on the board so we knew it was all going to happen.

It was 8am and the doctor came in at 10am.

Another couple had been booked in and we did at least have someone to talk to.

There were eventually 4 patients and another 6 were coming in for the afternoon.

This was all being carried out as private patients. I did wonder how much this was costing the NHS.

Radiofrequency denervation is a treatment that uses heat to deactivate the nerves around your facet joints that are causing your pain. These nerves are called medial branch nerves and send pain signals to your brain if you’ve got inflammation in your facet joints.
Your doctor will use radiofrequency waves (a form of electricity) to heat the tip of a needle which is used to destroy the nerve endings. This aims to stop the nerves sending pain signals to your brain.

The other man went down first and  last it was Rays turn as I sat and waited so here is Rays version of events —-

Sunday, Early afternoon and I am back home. I’ve had my back op at last. The procedure was called Radio Frequency Deneration. That just means  burning the nerves in my spine to kill the Pain.
The whole thing lasted just an hour. I was told it was painless. That was ONE FRIGING LIE. It involved 6 Injections  3 each side of my Spine to numb it. Not very effective, Next comes the special Radio needles. They are inserted 3 each side. These are then connected to a radio Frequency Machine They are guided  in by Exrays  to ensure  correct positioning. Some chemical is pumped  into  each needle and it is switched on for a count of one minute per. The needle is heated up  to 85c and it vibrates the pain was agony.
The Nurse at my head  holding my hands and talking to me was asking me questions. tell me what you can feel  he kept asking. I could only at best reply through gritted teeth and loud agonised  screams of pain. He was saying  you’re doing fine if you can feel the pain we are at the right spot. I felt so embarrassed. When the left side was done I was shaking all over. OK  that s half done he said. Oh shit I thought it was all over. I remember saying Oh No not more. But next came “Are you OK Raymond is it OK to continue”. Yes I grunted. It was so uncomfortable laying on my belly with nurses wiping my Bum with antiseptic. And so  that pain was repeated with the next 3 needles. Then I was left for what seemed ages. At Last it was -OK on my command we want you to Roll over onto the Trolly. We are all ready to Catch you . YES?. But after a journey  to the  recovery room and promise of a cuppa It was over. All  in all we got there at 8 am and was discharged at 1.30. Its not something I want to repeat anytime soon. Does it work? WTS.

Bless him he has been improving and I have made him rest.

He strides around, he is upright and moving with ease and his face looks so much better and beams with a huge smile.

This has worked and worked well. He goes over speed bumps and it doesn’t hurt. How brilliant.

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma– #Asbestos In The House

Now and again you come up with a  google search or on social media you find a company that catches your eye and find they are talking your talk.

I did just that the other day as I was looking through LinkedIn and there it was, a comment from a man on an article I had copied over.

I had a message from him and a friendship has been struck. Why?? because he shares my passion for surveys to be carried out in houses.

I have spoken of this for sometime that we should have survey’s of the asbestos in a house built before 2000, and in the selling pack. Asbestos wasn’t fully banned as a building material until 1999, so anybody inside a building that was either built or refurbished before that date, or currently undergoing construction work, is at risk of asbestos exposure.

Some Mortgage Company’s are pushing for this. They are not expensive.  I would want to at least know where the asbestos was so that I could manage it. To decide whether to have it removed or just to know where not to drill or where not to scrap.

So many people have removed the Artex or the flooring and the popcorn wallpaper. Taken sheds down etc etc  with no protection.

Rob emailed me :-

We came across the idea when realising that the Control of Asbestos Regs didn’t seem to concern about the domestic home owner.  We do quite a bit of asbestos work with architects on a commercial level at BESA group and found that we were having to remind them that asbestos is also present in the home although the regs point towards social housing.

From there, and a small amount of requests for the removal of the odd domestic garage roof, we realised that asbestos identification and removal is either priced at a commercial level or conducted incorrectly by cowboys!

Being a company that work with 3 councils and a good handful of large commercial outfits, we always rely on prudence when providing asbestos advice rather than taking the client for their ignorance. (Not many of us about, I’m sure?)

We decided to set up Asbestos in Homes to bring an affordable but professional company to the domestic market.

Off the back of the website and ‘Google Ad Words’ we have seen an organic growth as a department, with more and more home buyers and sellers, estate agents and small domestic service companies nationwide, (plumbers, electricians and builders etc) finding us to be a good source of free advice and affordable remediation. (Even if it’s based on potential products identified within home buyers report)

I love watching the domestic market start to take asbestos seriously, not just because we are a business but because I got into this industry after leaving the army, seeing events that created unnecessary trauma in people’s lives, and realising that some people really don’t care how they can negatively affect the lives of others for their own gain.  ——

So lets keep family’s safe shall we and let’s make it a law.

 

HAVING WORK CARRIED OUT AT HOME?
CONSTRUCTION (DESIGN AND MANAGEMENT) REGULATIONS 2015
Am I a domestic client?
If you’re having works carried out at home it is important to understand your duties and responsibilities under current regulations.
http://www.legislation.gov.uk/uksi/2015/51/contents/made
A domestic client is any individual who has construction work carried out on their home, or the home of a family member, that is not done as part of any business. While these regulations place duties on commercial clients in full, the duties for domestic clients normally pass to the contractor or principal contractor.
The Importance of a contractor / principal contractor
As a domestic client undergoing construction work, you must follow regulations that have been put in place to keep you and your family safe. If you have appointed an architect or designer for the proposed works that involve more than one contractor you can ask them to manage the project and take on these responsibilities as a principal designer. A written agreement between the domestic client and the architect / designer, must be in place.

Throughout your project, the principal contractor or designer will ensure that all pre-construction information is relevant to the project. This information includes the health and safety file for your project, as well as an asbestos survey and structural drawings. All information must contain an appropriate level of detail and be proportionate to the nature of the risks. A professional contractor will give you this complete peace of mind.

HAVING WORK CARRIED OUT AT HOME?
CONSTRUCTION (DESIGN AND MANAGEMENT) REGULATIONS 2015
Am I a domestic client?
If you’re having works carried out at home it is important to understand your duties and responsibilities under current regulations.
http://www.legislation.gov.uk/uksi/2015/51/contents/made
A domestic client is any individual who has construction work carried out on their home, or the home of a family member, that is not done as part of any business. While these regulations place duties on commercial clients in full, the duties for domestic clients normally pass to the contractor or principal contractor.
The Importance of a contractor / principal contractor
As a domestic client undergoing construction work, you must follow regulations that have been put in place to keep you and your family safe. If you have appointed an architect or designer for the proposed works that involve more than one contractor you can ask them to manage the project and take on these responsibilities as a principal designer. A written agreement between the domestic client and the architect / designer, must be in place.

Throughout your project, the principal contractor or designer will ensure that all pre-construction information is relevant to the project. This information includes the health and safety file for your project, as well as an asbestos survey and structural drawings. All information must contain an appropriate level of detail and be proportionate to the nature of the risks. A professional contractor will give you this complete peace of mind.

http://www.asbestosinhomes.co.uk/#health-risk

Please read though their web pages it could save your families lives and save them from Mesothelioma

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos –Field Fisher Spotlight On Immunotherapy Conference

Fieldfisher hosted a late summer conference on the developments in immunotherapy treatment for mesothelioma. The event featured talks from Dr Peter Szlosarek and Professor Angus Dalgleish, both preeminent experts in the field of immunotherapy.
This event was supported by Mesothelioma UK, and Fieldfisher will be made a donation to this fantastic charity on behalf of each attendee at the conference.
The conference was held at Fieldfisher’s London offices My Favourite place in all of London. as I have mentioned so many time before.

The two Doctors were so informative as they both talked about their work
Frontline immunotherapy in mesothelioma – update and trials
Dr Peter Szlosarek – Clinical Senior Lecturer at the Barts Cancer Institute (BCI), and Consultant in Medical Oncology at St. Bartholomew’s Hospital, London

Professor Angus Dalgleish – Professor of Oncology at St. George’s University of London
Dr Szlosarek and Professor Dalgleish  provided an overview of their research into immunotherapy treatment and  provided an update on their findings and upcoming trials.

It was enthralling especially when Angus talked about VitD seems we should all have our Vit D checked as we don’t get enough sunshine and  we forget we put Sun Block on so that causes a problem I will start a course of Vit D as it seems it is good for our Immune System and also lowers Blood pressure.

Also Pineapple Core Never heard of that before

The core of the pineapple may seem to be very hard, less juicy and slightly bitter as compared to the juicy slice, but don’t remove it. The pineapple core is a rich source of fibre and keeps your digestive system healthy. Bromelain is a proteolytic enzyme with anticoagulant properties that helps clot blood. It also possesses anti-inflammatory properties and aids healing of wounds or bruises and other skin infections. The core has high concentration of Bromelain as compared to the fruit and hence is more beneficial. It is also a great source of Vitamin C, just like the fruit, and boosts your immunity. Bromelain also improves heart health and helps in thinning of the mucus in conditions like asthma, for easy breathing. Moreover, along with the fruit, the core is also a rich source of manganese and promotes bone strength and controls cholesterol level.

And even cannabis oil is being taken serious which is something we are always asking.

Then it was my turn as on Friday I had an email would I step up to the Mark as they had a cancellation. So I had my Presentation ready for  EAF and the Contamination Expo so I sent that in and that is what I used.

It was well received so I was really happy even when I made Peter Laugh when I said My Foundation was raising money for Research and to feed Peters mice with cheese.

After a break we heard from a lovely lady her story of Mesothelioma

Then an Update from Mesothelioma UK
Anne Moylan – Mesothelioma Clinical Nurse Specialist
An update regarding the work the charity have been doing in the past year.

And finally we had a great talk from Peter Williams and how they are claiming for these more expensive drugs as they haven’t been licensed yet and patients are not happy with trials with Placebo so they are paying for them at £7000 per infusion. Field fisher have  successfully recovered past and possible future costs of a ground-breaking new therapy to treat patients suffering from Mesothelioma BUT It is difficult to know how much to claim as it is unknown if the drug will work. So there is a lot more work to do to sort the problems out.

Afterwards, we had drinks and canapés shame it was cold and raining so we couldn’t go out on the Terrace and it was great to bring together Mesowarriors and Medics and Lawyers as we all had good interesting chats
We finally said our good byes and had a good journey home.

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos -All my Speech dates are in the diary a busy Bee

Wow Where has this week gone.??

Everyday I have had to put appointments to speak in trying work out the journeys to the venues and booking hotels.  I love it really.

But I missed out on one a couple of weeks ago so I’m paranoid that wont happen again.

September is so busy and I have so much going on. Lots of blogging material coming.

Social Media and Me
Mavis Nye – Mesothelioma Patient, Advocate, Blogger and Meso-warrior
I have always blogged about my mesothelioma journey – from initial diagnosis until today, which amounts to eight-and-a-half years. My blog helps me to reach a lot of people and tell them what it is like to live everyday with a terminal illness. Facebook also helps me to link up with others in the same boat and provided a space to share our experiences. At one point, I even created several Facebook groups with another meso-warrior.
When she passed away, I continued to work on these communities. I built them up into Facebook support groups, a dedicated webpage and a foundation. I also have a Twitter account (@grandmamavis) and a LinkedIn page. These platforms allow me to share information on my disease, treatments and trials. This collective work has resulted in a position on the steering committee for a clinical trial, an important opportunity that allows me to help guide trials from a patient perspective.
To date I haven’t found any disadvantages to using social media. It is a medium that has allowed me to reach out to thousands of people from around the world to affect change. I am very proud to share my story and my work through these social media channels, as well as on TV., radio and YouTube. I thought when I retired I might be bored occasionally; how wrong I was!
Help the mesothelioma community raise awareness on social media during Mesothelioma Awareness Day on Sept. 26, 2017. Remember to use the hashtags: #MesoAwarenessDay and #ENDMeso.

https://www.iaslc.org/membership/newsletters/iaslc-newsletter-august-2017

Then another Tradespeople need to consider lung health of loved ones”
Published:  31 August, 2017
Mavis Nye, from Seasalter, Kent, is fighting to raise awareness of mesothelioma after contracting cancer – thought to be from contact with asbestos on her husband’s work clothes.
Occupational lung diseases such as mesothelioma – caused by exposure to asbestos fibres – are increasing. Since 1992, mesothelioma deaths have increased by 70% to 1,862 and it receives far less money for research than other cancers that kill the same number of people, something that Mavis is very keen to change.
Mavis said: “I was diagnosed with mesothelioma, a cancer caused by contact with asbestos that affects the lining of the lungs, in 2009. I’ve never worked in the construction industry or on a building site, however my husband Ray did. He used to come home with his clothes covered in dust, which I used to shake clean and wash for him.
“At the time there was very little knowledge about dangers of coming into contact with asbestos, and it never crossed my mind that I would be in danger from inhaling fibres from his clothes. I think it’s important for tradespeople to realise that it’s not just their own lung health that may be at risk, but also loved ones – their partners and even children.
“Thankfully I am still here to talk about my condition, but I know I’m one of the lucky ones. I want to make sure no-one has to go through this experience in the future.”
Dr Penny Woods, Chief Executive of the British Lung Foundation (BLF), said: “Mavis’s story is truly inspiring. She is understood to be one of the few people in the world to be in recovery from mesothelioma.
“Breathing in asbestos dust can result in mesothelioma. It takes a long time to develop from the time of original exposure, so people might not experience symptoms for many years. It’s important that everyone in the construction trade is aware of the risks to their own health, and also to their friends and family.”
One way of reducing the effects that dust causes is using extractors. Festool, a supplier of high-end power tools and accessories, including a range of dust extractors, has been speaking with those affected by mesothelioma as part of its latest Breathe Easy campaign.
Jon Burcham, Marketing Manager at Festool, said: “Festool has long-been associated with our excellent dust extraction systems. We can see that dust extraction and the measures tradespeople need to take to protect their lungs is something that more and more people are talking about. But the awareness needs to go further. As Mavis’ devastating story shows, it’s not just the individuals on a site who are at risk, people in the trade need to be aware of the risks to their families and partners and take steps to protect them as well.”

http://hvpmag.co.uk/news/fullstory.php/aid/5115/_93Tradespeople_need_to_consider_lung_health_of_loved_ones_94.html

  Then The Contamination Expo has stepped up a notch as the D Day Approaches

Mavis Nye Foundation in association with Shield Environmental Services
I was married in 1960 and life was very normal as we lived through our working life and bringing up our family. We got to retirement and sold our house, moved to Seasalter near Whitstable and bought a larger motorhome, which we pointed to Spain and wild camped through France into Spain, staying outside our son and daughter-in-law”s villa, much to the amusement of the local residents. After 2 months we came home and my life went into turmoil. We hadn”t realised that the dust that Ray had come home with all those years ago as he worked around asbestos as a Shipwright was going to change our plans for retirement.
Finding out you have terminal illness is a devastating blow.

Mavis Nye. BCA
Mavis Nye Foundation in association with Shield Environmental Services
I was married in 1960 and life was very normal as we lived through our working life and bringing up our family. We got to retirement and sold our house, moved to Seasalter near Whitstable and bought a larger motorhome, which we pointed to Spain and wild camped through France into Spain, staying outside our son and daughter-in-law’s villa, much to the amusement of the local residents. After 2 months we came home and my life went into turmoil. We hadn’t realised that the dust that Ray had come home with all those years ago as he worked around asbestos as a Shipwright was going to change our plans for retirement.
Finding out you have terminal illness is a devastating blow.

http://hazardousmaterialexpo.com/speakers/mavis-nye-bca/

We had to go to London Yesterday and the Railway is in a muddle with all building going on in The was no trains to London Bridge Charing Cross or Waterloo so Our Train was so packed.

We had a good Underground journey though to Euston and found the GMB Building where we were going for a Mesothelioma Alliance meeting.

This is a coming together of all the Mesothelioma Charities and Support Groups.

The Mesothelioma Alliance was established in 2017 to
bring together mesothelioma stakeholders as one voice
to raise awareness of mesothelioma through agreed projects

We were trying to work out a Logo for the new group and that isn’t easy.

Lots of discussion and lots of thinking and we were saying our goodbyes as we travelled back home.

It was Ok as it wasn’t quiet rush hour and the children are off school still. The Train to home from Victoria was very packed and we were standing until 2 people gave up their seat. It is so very kind and I was relieved to sit down I must admit.

So another trip under our belt. I came home and spent the evening booking hotels again as well as catching up on emails and messages and helping people with problems as just because I had a day off Meso doesn’t. People are still frightened and need advice.

I finally got to bed in the early hours. Exhausted but I didn’t sleep for long. Just when you wanted to sleep right through you never do.

So I finished catching up to-day and I know I’m straight and everything id back to normal-what ever normal is