A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos–The First Mesothelioma Uk Parliament Lobby

 

 

 

 

 

 

 

 

 

I had an email from Brian Wallis Meso Uk Ambassador –Dear Mavis and Ray our next big event is the AMD _Action Mesothelioma  Day- connected, MUK MNS visit to Westminster and House of Lords which I have organised for Mon. 24 June. This includes a tour of the parliamentary estate in the morning and meetings, lobbying and tea in the Lords in the a’noon. If you both feel able to come and join us – you will be most welcome.

I jumped at meeting up with Brian again but just didnt know what the day would consist of–boy were we in for a treat.

We had to get up at 4.30am to get a train to London paying a terrieble price of £120 as it was rush hour.

Got to London and the tube wasnt running from Victoria due to a fire alarm going off so we hailed a taxi. Amazing that it only cost £6.00 to Westminster.

We gathered all together as we everyone arrived and we then went through security.

We was treated to a wonderful tour of the H/C

 

 

 

 

 

 

 

 

 

Such a very knowledgeable tour guide showed us round.

We have been around this building so many times through our journey of Asbestos but we have never gone around with a person that knew so much.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We then had a welcome break for a coffee and a rest.

While Liz and the Mesothelioma UK Nurses went to their meeting -A CNS Forum which Baroness Dyleth Morgan had arranged – we went off then to the Jewel Tower which I didn’t know existed

The Jewel Tower is a precious survival from the medieval Palace of Westminster. It was built in the 1360s as a secure store for royal treasure within the private palace of Edward III. Later it became the records office of the House of Lords, surviving the fire which in 1834 destroyed much of the historic palace. Later still, it served as a testing facility, determining the value of weights and measures for Britain and its empire. From the 1950s demolition of nearby buildings, landscaping works and archaeological investigations have brought to light important features of the tower’s setting.

A reconstruction drawing showing the Palace of Westminster in the late 15th century. The Jewel Tower is at the corner of the palace garden

A reconstruction drawing showing the Palace of Westminster in the late 15th century. The Jewel Tower is in the centre foreground, at the corner of the palace garden© Historic England (Illustration by Terry Ball and Richard Lea)
We climbed up a spiral stair case that I lost all my puff and couldn’t go up the second set

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

https://www.english-heritage.org.uk/visit/places/jewel-tower/history/

We then went back to the House of Lords where we sat in on a debate and didn’t understand a word as it was all about amendments to this and that, but it was interesting to see the Lords.

We crept out and then went to tea with the nurses and Baroness Morgan.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The time had run away with us by then and we had to rush off to catch the train home.

The Underground was packed and we had to push our way into the train to get a space. and was so pleased to get on our train to home and to have a seat.

We were shattered but happy bunnies as we made our hot Chocolate and got into bed.

It has been storming all night though and lightening flashing but hey! ho! who cares its been a great day.

A Diary Of A Mesowarrior Living With #mesothelioma #asbestos — Safety and Health Expo A great GP and The Royal Marsden are watching over me

 

 

 

 

 

 

Safety and Health

  • Thousands of innovative health and safety products from 300+ H&S suppliers
  • 75+ hours of CPD-accredited seminar sessions on mental health, legislation, case studies, investigation, leadership and technology
  • Networking opportunities with over 14,000 health and safety and HR professionals
  • Workplace Wellbeing Show, featuring a Wellness Wall by IWFM
  • Safety Technology Zone
  • Complete access to neighbouring shows in security, facilities management, fire safety and wellbeing

Safety & Health Expo 2019 | ExCeL London | 

Thats where Ray and I travelled Thursday first to Stratford International then onto the weird train that is the

DLR station soon after opening in 2011

The Docklands Light Railway extension to Stratford International consists of a short new line from Stratford International to Stratford station, then continues along the former North London Line route between Stratford and Canning Town, stopping at Stratford High Street (on the site of the original Stratford Market railway station), Abbey RoadWest Ham and Star Lane before joining the existing DLR branches from Canning Town to Woolwich Arsenal (during weekday peak hours only) and Beckton. Its opening was originally planned for July 2010, but was delayed to 31 August 2011.[14]

But the biggest point is NO DRIVER !!!

We arrived at Expo  We met up with my Foundations Ambassador Paul Chamberlain  Wefitrpe Ltd Accredited Fit2Fit Face Fit Testing Provider, Basildon Essex.

and Rebecca Crosland of BESA

We walked around and bumped in to so many people.

Fred Charlton Fit2fit Assessor at British Safety Industry Federation (BSIF) loads of hugs

Gary Stewart Director at Absolute RPE Solutions Ltd  even more hugs 

I love networking xx

Then out the blue walking in front of me was a young woman who I have been in touch with for  long time. We have never met and yet know each other so well through Social Media

Louise Taggart who tells her brothers story. A very sad story https://www.michaels-story.net/blog?tag=Safety%20Story 

Louise Taggart bravely tells the story of her brother Michael, fatally injured at work, in the hope of helping raise awareness of the fundamental importance of safe systems of work.

 

 

 

 

 

 

 

 

 

 

The time soon went and we had to travel home and we got on the wrong train and ended up in Woolwich and had to come back and then travel on to Stratford International.

You just can trust us anymore ha ha !! But we saw the London Barrier and the O2 so it was a great tour.

 

 

 

 

 

 

 

 

Home and very worn out standing on a crowded train.

Got up today with a very sore and lumpy mouth so I have had to ring the RM who say I can go to my GP and he can phone the RM for advice. My eyes are so light sensitive and Im being treated for that and have to see a specialist but over night my mouth is full of tiny lumps the tongue is sore and it has broken out onto my cheek. What a state. So off to the GP at 11.20 I will report back I have been told by a nurse that Immunotherapy is beginning to cause this side effect. I have had immunotherapy for 5 years at every 2 weeks and also 10mil/kil so I think I have been very lucky so far.

I got the appointment and saw a lovely young GP. very switched onto Mesothelioma and my drug.

he looked in my mouth and feels it is thrush. Immunotherapy can cause it.

He has given me Daktarin and took a swab to send away to confirm it.

Then he gave me a gel for my eyes Clinitas. So Im eating very soft foods and being very careful what I eat,

Then I got a email from the Royal Marsden with an appointment to go to Ashstead Private Hospital next Wednesday to see the Eye Specialist so I feel very cared for and everyone working with me.

Thankyou NHS and Thankyou RM your care is wonderful.

One more thing

 

 

 

 

 

 

 

If you can get to the Chatham DockYard on the 9th July at 2.30 for a Celebration please email

Joanne Tatam joanne@tatam.net

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –Rays Pet Scan and Ultrasound My day at the Royal Marsden

 

Life has been a bit hectic what with both of us with cancer now.

Last Thursday we had to travel to Ashford for Rays Pet Scan. this is a long process and I was nattering away to another carer while she was waiting for her husband.

The unit is run by a private firm which surprised me

PET scans are a type of test that create 3 dimensional (3D) pictures of the inside of your body. PET stands for positron emission tomography. The PET scan uses a mildly radioactive drug to show up areas of your body where cells are more active than normal. It’s used to help diagnose some conditions including cancer.

Now we have to wait for results.

On the way home the sat/nav took us through narrow country lanes so it was great to see places we didnt know existed, but it was a lovely country ride.

 

 

 

 

 

 

 

Friday saw Ray at the Kent and Canterbury Hospital for a Ultra Sound on his neck and a bi-op. I sat in the car to be able to take a phone call from Ed Cook BBC

We had a long chat about a program we are filming for LASAG in Seven Oaks tomorrow 19 June.

I was amazed at how hot the car got no wonder poor dogs die in the heat. I was glad to get out and go and find Ray. He had the good news that his nodule in the throat was still very small so they are not doing a bi-op yet.

The weekend was quiet and I caught up with a bit of gardening as the rain has caused everything to grow up high and my neighbour wanted a plant of mine cut down as it had covered her house number she has swinging on a chain.

Monday (yesterday) saw us getting up at 4.30 to travel to the Marsden for my treatment. We were sailing along then on the M26 stop. A car had caught fire on the M25 at Clackets Lane.

 

 

 

 

 

 

They didnt have to close all the road so we did squeeze by and couldnt believe we arrived on time at the RM.

Bloods done we sat and waited but when i saw the Doc I told him about my eyes. They are treating my hay fever but we are now waorried about the fact i have become very light sensitive until the drops work. I will get an appointment for an eye specialist. I worry that Immunotherapy might be causing this. It freaks me out when ever I get anything wrong as I just cant stop treatment.

They are waiting until the next scan confirms the meso is growing and the put me on a new trial,

I then had an appointment as I have entered a trial for Virtual reality intervention.

Safe space

SafeSpace is a unique app for Android and iOS mobile devices, providing immediate access to a sensory room experience wherever and whenever it is required.

The software has been designed to benefit children and young people with autism, learning and developmental issues or other neurological and emotional conditions; providing a solution whereby traditional methods of stimulation and support have been augmented and transformed like never before.

I chose a beach with waves and a palm tree and looked around found foot prints in the sand and wondered who had been there.

I have completed a huge amount of questionnaires. I have 3 more sessions and they will asses if cancer patients would benefit from this.

We have so much time on our hands when in appointments I think it would be a good thing.

I will report back to you all.

So tomorrow is an exciting day filming for the BBC for LASAG I will report back on that as well.

I seem to have caught up x

https://www.mavisnyefoundation.com/

https://ramos72.wixsite.com/mnf-donation-info

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos -A catch up on the news

 

 

 

 

 

 

 

 

Life has been busy and a whirlwind.

Since the Beacon International Cycle where they raised £5575k  my feet have touch the ground. What a wonderful sum of money and it is still rising.

 

 

 

 

 

 

 

 

 

We had Meso Survivors Day which I of coarse played a part on social media. I have now survived 10 years. It is mixed feelings as so many mesowarriors have lost their lives in that time All I can do is keep speaking for them. Im a voice to keep their terrible disease in the public eye and raise all I can while Im still here is do all Im doing. Speaking where I can and raising Donations for research into this awful painful  asbestos disease.

I went to the Royal Marsden for my drug day. They had new growth as I reported in my last blog and now the pain is rising again in the back shoulder blade. Im expecting the date for my Bi-Op.

 

 

 

 

 

 

 

 

4th June was our 59th wedding anniversary  a day to remember my wonderful father as he gave me away. Bless him and it is Fathers Day this Sunday.  xx

5th June we travelled to London to a Mesothelioma Alliance meeting at the GMB Offices. goodness they are are doing such a lot of building in the Eustan area it was like a obstacle coarse to get around it all.

 

 

 

 

 

 

 

Ray painted the shower room out Grey is the colour

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

7th we went to the Kent University to meet Dr Louise Naylor who has a wide range of both academic and administrative experience in higher education and interests in supporting learning, teaching and research. She will be our Orator on the big day July 9th in Rochester Cathedral.

We showed her our speeches and we helped her with hers with all the info she needed.

We had a lovely lunch and spent a lovely couple of hours.

On the way home I called at the Garden centre and bought compost and plants. It was all to heavy for us to lift so got it delivered, we wouldnt have got the plants in as it rained all weekend. 2 months of rain in one day is unbelievable.

June 10th my plants arrived so I was able to plant up my pots

 

 

 

 

 

 

Just got to wait for them to grow larger now

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So much mint I will have to make jars of mint sauce

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

11th July was a LASAG support group meet up where we made plans for Mesothelioma Action Day July 5th.

We had a great talk from Sarah Collins Operations Director Of Cancer Care Group EKUFT a really new broom sweeping very clean I have high hopes things will be better in our East Kent Hospitals

June 12th Saw us up in London again for a MNF Board meeting and planning that big day in July 9th.

So that is part one written and part 2 gets even more hetic,

 

 

 

 

 

 

 

 

 

A huge thank you for all the people donating you know how grateful we all are for all your kindness.

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — Mr Nasty is rising up, Virtual reality Intervention Pilot Study, Involved in the training of new Chemo Pumps..

 

 

 

 

 

 

After all the excitement of Friday and the fabulous weekend of sunshine today was back to reality and the ride to the Marsden for scan results and treatment.

The traffic was brilliant and we went straight through (the schools must be on holiday still?)

We waited some time for bloods to be taken as it was a training day for the nurses.

Bloods taken we waited in the waiting room. There wasnt many patients coming in today so we didnt have any one to talk to.

Carol made us tea and toast as we were waiting so long which was sweet of her.

I had a visit from the lady who is running the virtual reality Intervention Pilot Study.

Based on the theory that introducing calm can help the cancer patient

I have signed up as I sit there for hours watching TV every 2 weeks so I will be doing something to help.

Based on this sort of thing https://www.youtube.com/watch?v=ELU-43DMNT4

Then the Doctor asked us to come in. He had my scan on the computer and then told me it was still growing. It was still very small but they can bi-op it now.

They have 2 drugs they want to use so I need another bi-op.

 

 

 

 

 

 

 

 

 

I went to the Ultrasonic Dept and the doctor that is going to do the Bi-Op showed me Mr Nasty.

He looks like a black Pebble and she said he is the size of a finger nail. They want to hit him while he is small.

So she is going to talk to my Oncologist but she is at ASCO2019 in Canada.

I said dont forget I need July 9th free. But everyone seems to know about it xx

We went and had some lunch in a daze. the day we dreaded is back again and the fight is on again.

When my drug was ready I was called into the ward and then asked would I help out with the training of the new drug machine.

 

 

 

 

 

 

 

This is what all the training has been about today and I was the first patient. By being enclosed means less infection and also keep the nurses safe from the continual working with chemo.

So I had a gathering of all the nurses as I went through my treatment for the 45mins that it takes. A very Interesting day today.

 

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos – The Mavis Nye Beacon Cycle Challenge

 

 

 

 

 

 

 

 

 

I havent written a blog for some time as we have been catching up on things around the house. The garden looks back to normal and looking good with all the new flowers popping back up. if only we could change our seasons and have new bodies every year.

Ray decorated the bathroom so that looks very nice.

We got ready to go to Essex for The Beacon International Ride through England from Washington to Thurrock calling at each factory on the way down to raise money for the MNF  https://mydonate.bt.com/fundraisers/mavisnye-cyclechallenge?fbclid=IwAR1JkdDnQU9J1EuvCxsEoDy8GbTwFHqy2K20VabRSorq_nCB_poy85brcnE

Event details by Andy

About

We want to help raise as much money as possible to help the Mavis Nye Foundation continue with its working in developing treatments and finding a cure for mesothelioma.
Please give generously and you are welcome to cycle all or part of the route with us and ask your friends and family to sponsor you too.

Mavis Nye Beacon Cycle Challenge

After a visit to our factory from Mavis and Ray Nye, our staff were inspired to do something to help raise money for Mavis’s fantastic charity.
We have a team of cyclist who will be embarking on a gruelling challenge to help raise as much money as possible for the Mavis Nye foundation and also help raise awareness about mesothelioma and other lung diseases.
We plan to set of from our most Northerly depot in Washington in Tyne and Wear, we’ll cycle down to our  Leeds depot on day one. The next day we’ll set off from Leeds down to our central office and headquarters in Desborough in Northamptonshire. On the third and final day we’ll set off from Desborough down to our most Southerly office in West Thurrock just outside London.
The whole trip will be in excess of 350 miles, Mavis and Ray Nye will be waiting at out final location to receive our cyclist as they finish their mammoth journey.
Please give generously to this amazing charity which has done wonders for developing treatments for mesothelioma suffers.

Event date

29-May-2019 00:00  –
31-May-2019 00:00

Event type

Cycling

Event is completed

Louis came and picked us up and we had a good clear run across the Dartford Crossing to the depot at Thurrock where we sat in the office to wait for the 12pm arrival. It is 20 years since ray and I had sat in a working office and it bought back lots of memories of our working together in the Fire Alarm industry.

Happy days x

At 12 we were down stairs and the riders appeared around the corner and the fun began

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So a really great time was had by all and at 10.15pm last night the donations reached over the £5k target

Thank you so much to all those that have Donated and a huge thank you to Andy at Beacon for putting this event on and an even bigger thank you to the riders you did so well A huge mummy hug to you all xxx

I would like to finish with an article by Graham warren which sums up why Im so behind Beacon. i have visited the factory and Im amazed at what they have achieved to make Asbestos removal safer for the men in the enclosures Ray Gravener is a wonderful inventor and I can sit for hours listening to him. He has so much knowledge and the partnership between him and Andy Lewis Thomas is such a wonderful friendship. Im so proud to call these two friends.

Beacon International propose a revolutionary game

Beacon International propose a revolutionary game changer for the Licensed Asbestos Removal Industry

Graham Warren

Status is reachable

Graham Warren

Ray Gravener of Beacon International delivered a powerful talk at the BMTA Asbestos Seminar in Durham on 28th March on behalf of The Federation of Decontamination Equipment Manufacturers (FDEM), during which he offered his ideas for the improvement of air management within Asbestos enclosures for the Licensed Asbestos Industry. These aren’t just tweaks on the existing approach however; Ray has raised a series of concerns over current techniques and invested considerable time to develop his solutions that have resulted in a proposed fundamental redesign of how we undertake Licensed Asbestos removal. Here we explore Ray’s presentation and proposals.

So what are the issues behind this?

Ray’s work has identified that areas within enclosures could be missed by the incoming clean air even though we now have the higher ventilation rates taken from the HSL work which argued that a minimum of 1,000m3/hour created turbulence that resulted in mixing within an enclosure. His argument here is that the tracer gases used by HSL during RR988 simply do not work as a true model for Asbestos fibres. This stratification means fibres remain airborne for a long time and are not removed by existing arrangements meaning fibre levels will increase in some parts of enclosures away from what he terms the “Unidirectional zone” (see figure below). In addition fibres will stick to the walls which mean a higher risk of generating fibres during enclosure dismantling as well as having these still present where operatives are working.

No alt text provided for this image

Another problem is the level of particles coming into an enclosure in the first place. The current method of drawing large volumes of air in from outside the enclosure also means large volumes of dust particles are drawn into the working enclosure where more particles are added in the form of Asbestos fibres. The general dust loading can cause problems with air testing as any analyst with an occluded filter will testify to.

The solution?

Ray has proposed a completely new style air inlet that disperses the incoming air around the edges of an enclosure to maximise the unidirectional zone and, thanks to the Coanda effect (a flow of air sticks to a surface it passes over, following curves), it scrubs enclosure surfaces clean and minimises the settling of fibres.

No alt text provided for this image

This airflow inlet cannot be taken from a traditional airlock but here Ray has proposed an alternative that is commonly used on the continent which is, in essence, a 3 stage modular shower unit minus the shower with proper closing doors.

The next part is truly groundbreaking and overcomes the issue of pulling in large quantities of particles into the enclosure: the recirculation of NPU exhaust back into this new style air inlet in an almost closed cycle. Ducting attached to your NPU exhaust is channelled back round to these air inlets with only a small additional volume being drawn in each cycle (to create the pressure differential) and the same volume therefore being exhausted out of the cycle.

This recirculating also allows for a massive increase in the number of Air Changes per Hour (ACH) without creating a massive pressure differential that would increase the strain on enclosure fixings and seals. In addition by scrubbing the air clean through the HEPA filter over and over again at an elevated ACH rate this reduces fibre loading within the working enclosure, likely slashing current personal monitoring values for those undertaking Licensed Asbestos removal work.

No alt text provided for this image

Away from asbestos risk the recirculating system can also readily introduce heating or cooling as necessary to help contribute to improved working conditions.

The finished enclosure has a unidirectional zone like this:

No alt text provided for this image

Is recirculation a new idea?

According to Ray this was trialled over in America by no less an organisation than Ford but was abandoned as they could not overcome the issue of removing carbon dioxide from the air. Workers generate CO2 as they use up the Oxygen so within an almost sealed environment the CO2 level rises causing workers to slow down and feel tired and sluggish. Ray has overcome this with the addition of bespoke air inlets with a guide to ensure these are sufficient for the number of workers. In addition the smart ventilation controller explained next can have a CO2 level input allowing for this level to be monitored and managed accordingly.

Smart Controller

Beacon Internationals’ new smart ventilation controller controls the system automatically and is an essential component of the re-circulatory system. This has so many functions it’s impossible to list them all here but very briefly it can automatically control any number of NPU’s to ensure whatever pressure differential you require (-5 Pascals minimum) is maintained throughout a project. Data is automatically recorded and sent to the cloud allowing real-time monitoring and management of a job from the comfort of your beach chair. It also takes a large number of sensor inputs including pressure differential, CMH, temperature, gases and even particle counters.

Graham Warren ACAD Manager commented “The BMTA event had a great line up of speakers but the display and talk delivered by Beacon International was the highlight for me. Ray raised a lot of questions and shared his concerns with the audience on a variety of issues and it’s important these are looked into which is something ACAD will help support. It’s fantastic that our industry has such passionate people who are really striving to make a difference, and these latest new ideas from Beacon International really do provide a potential game-changer for us all.”

To find out more about these new products get in touch with Beacon International directly on 01536 762 939 or their website:

http://www.beaconinternational.co.uk/contact-us

Thank you xxx