A Diary of a Week of A Mesowarrior Living with #Mesothelioma #Asbestos – Drug Day, LASAG, Board meeting, and B&CE Speech At The QE11 Building Westminster

Its been a busy week this week

 

 

 

 

 

 

 

 

 

Treatment on Monday those 2 weeks come around to quickly and the traffic was so bad right from Maidstone M20 so you just know its going to be a long drag.

It was a 6 car knock so once past that we picked speed up.

The ward was very busy but I was the only Meso Patient and that is because there is only 1 other trial running there I do hope that picks up in the new year.

It was a long day but we did get home at 4.30 so too bad

 

 

 

 

 

 

Tuesday

We went to LASAG Support Group  in Canterbury where we learnt the sad news that a lovely man who ray and I got close to had died, such sad news.

We also had a good meeting talking to new members on our table.
We were asked to come up with new ideas for Mesothelioma UK Day next June so we had a good time coming up with ideas for the day and for raising funds for the group.

Wednesday

London again for a Board meeting of MNF and we found that getting off at Mansion House walking up bow lane we come out right by the side of head office. That makes our life so much easier as I hate Bank Station.

It’s far to large and you have to walk miles.

The best thrill of the day was the lifts that have been built in Victoria station to the underground. That is really a huge help.

Thursday

We had to leave very early again as we had to get to the QE11 Building at Westminster as we were talking at the B&CE event.

Something had happened on the Central Line and the workmen had to repir the line so there wasnt many trains running in the tube.

The gates were closed and the build up was huge right at rush hour.

Finally the gate opened and we were able to go to the tube but was told there wasn’t many trains running. We sneaked through barrier saying we were going for the Jubilee Line but as we did that a man told us there were a few trains running when they could.

With time running out we did get on a train and arrived at Westminster right on time.

Paul Cullinan speaking at B&CE Occupational Health Study Day: respiratory illness

Paul Cullinan is one of several speakers at the above event, to be held on at the Queen Elizabeth II Centre, Westminster, London on 11 October.

Paul will present ‘Health surveillance and monitoring for asthma and COPD – current best practice’ and ‘Silicosis – diagnosis and health surveillance’.

Other speakers include Mavis and Ray Nye from the Mavis Nye Foundation, who will speak about their journey and experience of surviving mesothelioma; Sue Brandrick and Tim Shambrook from HSE; and Margaret Grahamslaw, Head of Occupational Health and Wellbeing at B&CE, who will give an update on their occupational health management scheme.

We walked to the Venue and was greeted like a long lost friend.

 

 

We soon got underway and the welcomes and introductions were done

 

 

 

 

 

 

Ray and I spoke first and once again everybody loved our presentation. It does go very well our double act.

After a break We heard Paul Cullinon

He spoke about COPD

Lunch and then Paul spoke again Diagnosis. It was really great even if the poor man had the most outrageous cold.

After another break Sue Brandrick and Tim Shambrook Policy Advisors of HSE spoke then and Margaret Grahamslaw, Head of Occupational Health and Wellbeing at B&CE

It has really led me down the path at HSE and safety at work.

It was a wonderful day and thank you so much for the collection for my Mavis Nye Foundation I have banked £70.12.

Samantha Wilding  Adam Hamilton and Margaret Grahamslaw and everyone else thank you so much for your kindness to ray and I and for the lovely gift you sneaked into envelopes xx

We did a video interview for them and I cant wait to see how they use it.
Here is one I found on You tube -not the one Im in though
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A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Southern Water’s Health, safety, security and wellbeing partnership conference 2018 #HSE

 

 

 

 

 

 

Off we set in the very early morning for the 5.47 train to London but changing at Faversham we lost time. Arriving at Victoria and finding the Brighton train we lost more time. Changing in Brighton we lost more time for the Falmer train Wow !!! was we glad to get to the American Express Stadium even if we was late and by the time we found the right room where the venue was we were seriously late ad had to walk in after it was well under way.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

But we got a cheerful hello and do come in from the speaker Joe Murphy who is Head of Health and Safety, security at Southern Water.

So we soon settled as a check for £137,000 was handed to Air Ambulance. how amazing was that and to a very worth while cause as we need the service on our busy roads in Sussex.

When we had a break for coffee I met up with families faces so we soon settled in chatting and being introduced to new people there.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Back in the conference the next speaker for ATT  Adan Christopher was amazing.

It was involvement of being a controller and the controlled. management and men. But that was the best bit what was great was the showing of a film of an accident that took place where a construction worker worked on a Saturday on a site in London and a very bad accident took place where he drilled through an electrical cable and was seriously burnt.

This was acted out on the film and as we watched three men working one left the screen and walked through the door. It took a while to realise this has happened. He was all in his protective gear

The audience was able to question him on his reasons why he allowed the job to carry on when there were problems with the drawings etc. He went back out the door and walked back on site and the same happened with the other two workers It was just brilliant. This really should be take up by other Companies. It brings accidents to the conference room and people can ask questions and from this so much HSE can be learnt.

These accidents do happen and they must stop. people must talk to each other and all precautions taken.

I wasnt told where the accident was but on googling I have picked up on several Simile accidents this one stands out http://www.constructionenquirer.com/2015/12/18/shock-video-of-11000v-cable-strike/

Two construction companies have been fined £90,000 after two workers were seriously burned, and one scarred for life after they cut into a live 11,000v electrical cable.

Southwark Crown Court heard the labourer and a bricklayer were working in a House of Lords site at Millbank, London, on 1 July 2013, to lay bricks around a manhole.

One of the men, who was 22 at the time of the incident, hit the cable with a jackhammer when removing old brickwork and suffered serious burns to his arms, legs, hands and face.

He was in hospital for nearly a month receiving treatment to his injuries.

So like asbestos let’s make the world a safer place to work in.

I have learnt so much from this presentation.

 

 

 

 

 

 

 

So it was lunch time and we had a great time talking to the exhibitors and making new friends swapping cards.

I met a delightful Irishman who is very interested in my Foundation we had a lovely chat as he told me the history of his family. I truly love what we do chatting to so many wonderful people they make my illness so much easier to bear that it has lead to such a great part of my life and enriched my world x

back in the room we had to get physically moving by a whirl wind of a character. Rachael Kelly a reporter had suffered mental depression

I found this video of her so it explains it all so much better than I could write it.

Then it was Rays and my turn and as always Ray was so good telling his journey. The audience just love him but like me were so tired by then and we both felt we didn’t give our best.

 

 

 

 

 

 

 

 

 

I followed and you can see what a big setting it was.

But it went down so well and everyone clapped and came up to wish us well and thanked us. I think we did a good job in raising the awareness to asbestos.

We said our goodbyes and our friend Keith Holes drove us to Gatwick were we were better able to get a faster train to Victoria and on a train to Whitstable so we were home sooner than we had worked out. Tired but very happy it had been a very interesting day.

New Best Logo copy.jpeg

A Diary Of A Mesowarior Living With #Mesothelioma #Asbestos – The visit of Past Mesowarriors Lovely Son, The Boat Sailed, The wonderful Voice of Hollie Firmin and Angie Mackrell race for Mavis Nye Foundation

Another week and suddenly we realise Christmas is nearly upon us.

We have made our arrangements what family we are going to and my son has booked us in to see the stage story of Tina 

https://tinathemusical.com/about-the-show/ 

 

 

 

 

 

 

 

 

 

We are also going to see his gig so we have Christmas all booked up just got to sort out present buying. That gets harder every year.

We were so busy then emptying the cases and washing clothes travelling to the Royal Marsden for my treatment. We sat there asleep most of the time as the long wait after my bloods are taken and then ordering the drug to be taken out of the fridge and made up with saline and then it goes back in the fridge, until they send it up  to the ward.   

We were on our way home just before the rush hour so we were’nt to late getting home.

We pottered about shopping and just enjoying a week free.

Then yesterday we got a surprised message from the son of a wonderful Mesowarrior could we meet up today Sunday. Brilliant that is just what we did. We met at the Harbour just as the Boat was sailing off for the trip to the Forts that are out at sea.

The ‘GRETA’ Thames Sailing Barge was built in 1892 at Brightlingsea, Essex by Stones. Used to do this ride but now we have a new boat sailing 

Length 80ft, beam 20ft, draft 3ft, displacement 49 tons

‘GRETA’ was built for a barge sailmaker called Hibbs. He sold her to Owen Perry who owned a fine fleet of working boats noted for their smart turnout and racing success.

‘GRETA’s usual cargo consisted of beer, grain, malt and building products. She did however carry some more unusual things for example the spars for the German Kaisers racing schooner.

In 1918 ‘GRETA’ was sold by Perry to The London Rochester Barge Company – which became Crescent Shipping.  Early in World War II ‘GRETA’ was chartered by the Ministry of Supply. Her cargo was ammunition from the Army depot at Upnor near Rochester to Naval vessels anchored at the Nore in the Thames Estuary.

‘GRETA’ is now privately owned by and is home to Steve Norris and 1st Mate ‘Alfie’ the dog and 2nd Mate ‘Ludo’ the dog.

In the Winter she is berthed at Standard Quay Faversham, and spends the sailing season (April – October) based  at the South Quay inside Whitstable harbour.

‘GRETA’ is maintained by Steve and his enthusiastic voluntary crew. Sailed throughout each season ‘GRETA’ regularly takes part in some of the sailing matches with other Thames Sailing Barges.

 

 

 

 

 

 

 

 

 

We carried on to the Whitstable Castle 

 

 

 

 

 

 

 

We caught up on all the news. What a great time sitting in the sun drinking Latte and just catching up with Chris White and meeting Georgina for the first time 

The time soon went and we had to say our goodbyes 

As we had walked from the Harbour we saw a young performer with a lovely voice. I have looked her up on facebook and found out her name Hollie Firmin

t was lovely there today and just as we passed she was singing Les Miserables of all songs it made me cry she was singing it just like the London stage so Crystal clear 

There was also a lovely write up for Worthing’s Angie Mackrell organised the 5km Miles for Meso run from the Gardens to George 5th Avenue and back in memory of her father, Steve Tuffill, who passed away from mesothelioma ADVERTISEMENT in 2017.

She ran this year for The Mavis Nye Foundatuon and i was so proud of her Angie has written a book – American Teabag: Memoir of 2016-2018 – about the struggle of her father being ill in America while Angie lived in England. It is due to be published in time for Christmas. Runners for next year can sign up here: www.facebook.com/events/475953732923721/?ti=cl
Read more at: https://www.worthingherald.co.uk/news/worthing-s-miles-for-meso-5k-raises-awareness-of-rare-cancer-1-8651698

A Diary of a Mesowarrior Living With #Mesothelioma #asbestos –The HSE European Forum Amsterdam and Miles For Meso

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Its been an amazing few days as we travelled to Amsterdam for the HSE Conference at Amsterdam at the Invitation of  Keith Hole to speak at the Venue.

We flew from Luton Airport but it had been a smooth journey to St Pancreas and then straight onto the Thames Link to Luton Pathway, our first time using this company and it was a brilliant ride.Then a bendy bus to the airport.

We passed the stripping off and being frisked and the flight with Easyjet was very smooth except landing in the wind was a bit hairy. We all clapped and cheered when we got down.

The Hotel was lovely but my goodness the price of food. I thought it would be an instant diet but we gave in and paid the prices.

 

 

 

 

 

 

 

 

The Conference went well so many great speakers on a subject I have never really studied before and dint realise so much passion went into the job to keep workers safe. I did learn,t so much

As usual there was so much went on so I will add the photos as Our speeches were so well received it was amazing.

We also played the marsh mellow game where we had to build a construction out of spaghetti,ball of string, tape, I couldn’t believe we won I was issuing instructions and the rest of the team built it and we won !!!

It was just such a happy 2 days where we met so many people from all over Europe

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Question Time after giving a speech that was received with tears and hankies xx

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Flight was great if a little bumpy!

https://mesoandme.wordpress.com/ this is Rays Blog

We did try to get back in time to travel to Worthing to the Miles for Meso event but didnt anticipate on the length of the queue to get through Costumes so we missed our Mesowarrior Angie  Mackrell running for the Mavis Nye Foundation. She has said — Angie Mackrell 

I just wanted to say thank you very much for all your help today, to everyone who took part, everyone who volunteered, everyone who shared my event with everyone they know, everyone who got sponsors or donated and to everyone who was cheering us on. I honestly can’t quite believe how wonderful this morning was. It was so lovely meeting and making new friends and getting a picture with the foxys! And I can’t wait to see how much we raised as one big loving team💕thank you thank you thank you xxx

 

 

 

 

 

 

 

there is still time to donate and boost her funds up https://mydonate.bt.com/fundraisers/angiemackrell1/

 

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — The Contamination Expo, UKATA Award to me, Leigh Days Event at the Shard

 

 

 

 

 

 

The day came to put Louis in the kennels and travel to Birmingham.

We had to go to London  first to a board meeting which was very eventful as things have come together fast now. With Donations coming in from all sorts of sources as very kind people are backing my wish to make something of the terrible disease Mesothelioma is and also to back the Asbestos Industry and my wish to educate educate educate the dangers of the deadly mineral.

So  have now put together the program of bring the grants to life for Research and will have an event in March 2019 when we have adertised the grants and then sorted through and the panel of Doctors have chosen the ones they think fit our criteria.

We said our goodbyes and set off for Euston and was soon travelling to Birmingham.

The Hotel at the NEC wasn’t finished with their building work so they had put us in the Hilton Garden and realised just how far that was from the Venue. but they had laid on taxis so it wasn’t so bad.

On Wednesday we woke up breakfast and travelled by taxi to the event I so look forward to.

We all know each other as we are from Linked in and always keep in touch.

We were on the UKATA stand and speaking in their theatre.

I have had so many hugs and congratulations on my great scan result. 4 Infusions and 14% shrinkage has bought so much interest to Mesothelioma and Imunotherapy.The first person in the world to rechallange for Mesothelioma, that really is to enormous to take in, but I’m loving the hugs. 

Craig Evans

Chief Operating Officer at UK Asbestos Training Association Limited
1d
We’ve had a great two days at the Contamination Expo Series 2018 at NEC Birmingham. It was great to see so many familiar faces, Members and new potential Members. A big thank you to the team, all of the speakers within the UKATA Theatre and finally several of our Directors who spoke at the event this year; Graham O’Mahony BSc (Hons), Chris Bishop & Roger Willey. Also, a special mention to Mavis Nye BCAh, it was my pleasure to present this remarkable woman with the UKATA Outstanding Contribution Award today, very well deserved. We will be back at the Contamination Expo in 2019! 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So as so much went on Im having to let the photos do the talking.

One person who stands out was Andew Ramsden of Sundstrom https://www.safetycompany.com/brands/Sundstrom-Safety.html

So I now have a Swedish connection and a Mask of my own.

We have had a business meeting and worked out how to sell the Sundstrom Premium Plus Pack in the UK with a donation going to The Mavis Nye Foundation.

Paul Chamberlain Wefitrpe Ltd Accredited Fit2Fit Face Fit Testing Provider, Basildon Essex. 01268 520962‬ or 07956 587072 Email sales@wefitrpe.co.uk

Will be the outlet and each box will carry the Foundations Logo

Very proud as this is the second mask to be sold with Donations going to the Foundation as we have ESS Safeforce doing the same thing with their mask.

ESS Safeforce: 
Essential House, 
Vaux Road, 
Finedon Road Industrial Estate, 
Wellingborough, 
Northants, NN8 4TG
I couldnt be happier as this is such a passion of mine to make sure the mean are safe.
Also ESS are selling a Razor to men who have stubble and they pay a £1 into the charity. Getting it through that stubble means their mask isnt fitting safely.
http://www.hse.gov.uk/respiratory-protective-equipment/fit-testing-basics.htm

If this is something you would like to do please send for a Charity box and buy a pack of Razors and raise money for my Charity also.

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

It was two days or such great fun and thank you to all the people I have met. The clock is ticking away to Next year 2019 and I cant wait. Its in my Diary I will be there please join me xx

We left and travelled back to London to another hotel in Southwark as we had an invitation to Leigh Days gathering in the Shard. 

 

 

 

 

 

 

It was great to be back here and watch London Light up for the night. What a sight.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My Fav Doctor was there and we can now let the secret out as everyone knows that it is Professor Peter Szlosarek

Congratulations and well done as you have worked so tirelessly to find treatment for the rarer Mesothelioma’s.  

A Diary of A Mesowarrior Living With #Mesothelioma #Asbestos – A Relaxed Day in London

 

 

 

 

 

 

 

 

 

It has been a great day in London today with our friend Harry Steinberg QC just a laugh and giggle day.

We were celebrating my great news of the shrinkage.

The journey up in the train amazed us as to how many people packed in as we travelled packed in like sardines. Football fans drinking beer already and children chattering excited to be going to London.

At St Pancras I phoned Harry, he could see me but I couldn’t see him and I’m looking outside and he is coming up behind us.

All the hugs over with we got a taxi but I had a phone call from Lucy Johnson of the Express. She is writing a piece on me for Sundays paper so wanted to read it through with me. So no false news in the Sunday express they talk it over with the person they are writing about.

The taxi pulled up outside a lovely restaurant right by The Aldrich Theatre where the show Tina is showing.

It was a lovely meal and lots of chatting to catch up on as Harry has been travelling around Europe.

 

 

 

 

 

 

 

 

The time flew by and it was time to travel home so in a taxi and back to the station.

We said our goodbyes but not for long as we are in a board meeting on Tuesday.

 

 

 

 

 

Ray has come home and snoozing now !!!

 

 

 

 

 

 

 

 

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

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Life is a Rollercoaster, But I have had a great Scan result

 

 

 

 

 

 

Life is a Roller Coaster

Ray had a phone call from the hospital to make an appointment after his scan result is showing something is going on in is Lymph Gland. Why that would give him a lump in his groin we do not know so all will be revealed on the 17th.

We do of course suspect the big C . We are positive people so we try to put the bad thoughts to the back of our mind but we will meet any challenges head on.

Getting old is such a pain (excuse the pun)

Well yesterday was treatment day at the Royal Marsden for me. I had a scan on Monday so we set of very troubled at what my results would be.

The traffic was very heavy as we travelled all the motorways but we did get there on time.

Bloods were done after a fight to find my veins. This is getting harder after so many times the poor veins have been abused with needles through the years.

We sat and waited for the Doctor to call me  in.

 

 

 

 

 

 

 

 

 

He said everyone was delighted when they had looked at my scan in the meeting.

14% shrinkage on only 4 infusions. I have responded so well on a rechallenge of MK3475-28 (Pembro)

Ray sat there shocked and his hand over his mouth.

From then on everyone came up to me and gave me a hug as they said we have heard the great news. Im the first meso Patient to achieve this great news.

A nurse came and saw me, she is one I meet often at conferences and she was so pleased. I said I would love to be brave enough to leave my body to research but she said Mavis you are doing so much while you are alive concentrate on that. There is a chance they do another bi-op so they can really see what is going on a rechallenge  That is Ok by me I said.

I want to know so many answers to the question What is it in my body that is allowing this great result so it can really help other Mesowarriors ??

So Infusion 5 is in and travelling around my veins now The story continues.

I have emailed the great result to Doctors that were waiting to hear, and received lovely answers back it was a great day yesterday.

Im surviving through this terrible disease.

 

 

 

 

 

 

 

 

 

Today we are going for an eye test. I hate it. Does it look better with this ? Does it look better like that?? I can never tell the difference

 

 

 

 

 

 

 

 

 

 

 

 

Please donate to Mavis Nye Foundation lets find the answers to Mesothelioma and fund Research.

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