A Diary of a Mesowarrior Living With #Mesothelioma —-A visit to Beacon International

beacon

For 26 years Beacon has been providing equipment and consumables for the asbestos removal industry. The team collectively has 150 years of experience.

Things are moving fast and furious with The Mavis Nye Foundation in a way I had never envisaged.

We travelled yesterday to our meeting with Beacon. They sent a lovely young man Luis as he lives in Maidstone and was able to come and pick us up and take us to Desborough Northants. A long journey in rush hour traffic about we got there in 4 hours.

We arrived and was met by so many friendly people it was a pleasure to have travelled so far.

Ray greeted us and told us all about his latest inventions and then took us up to meet Andy, the owner. After a cup of coffee we were shown around all the factory meeting the workers who showed us what they were working on. Andy showed us every corner and it came across how proud he is of his workers and what they were making. It was so good to know Manufacturing was still going strong in this day and age of uncertainty.

A little thing we found fascinating was when Beacon moved into the premises, that had been a shoe and handbag manufacture, the locals didn’t want to lose the handbag side so Beacon set up an area and carried on providing the handbags.

handbags

We carried on and watched as these vacuums were being produced.

A  new rang of Safe Change Vacuums allow the user to safely vacuum hazardous dust and when the job is finished the full dust collection pod and be safely removed and a new one fitted without the need for a controlled environment.

This new range of equipment is ideal for asbestos removal licensed and non-licensed work, medical, emergency services and countless other applications.

Screen Shot 2018-11-27 at 20.05.56

Andy with his eyes shut ha ha !! I noticed that there was no dust anywhere and asked if this was due to all the testing of dust extraction going on. They hadn’t thought about that but really it must be that the factory has become and enclosure almost.

There was so much to see Screen Shot 2018-11-27 at 20.05.40

These are the water tanks for the portable deacons which are fascinating. I had not thought that you couldn’t park deacons in London so portable ones are set up.

all their products are listed here http://www.beaconinternational.co.uk/

At the end of the tour Ray and I carried on and we gave our talk to the workers that had gathered and they were really appreciative as they said they work in the Industry but here were two people who have gone through the consequences of Asbestos.

I had said at the beginning and end of talk that they are helping people to stay safe, by the end of our talk they believed it and said they see their work in a different light now.

Then Ray announced how the are going to do a cycle race in May.

A relay race from site to site starting in Washington and ending up in a new premises in Essex.

That surprised me and does sound such great fun we will look forward to that.

This lovely man with his moustache are in the latest Harry Potter film, you just never know when your going to meet some one famous do you x

Screen Shot 2018-11-27 at 20.06.14

Jan will see the launch of a new product for the enclosure when I have more details I will divulge how that is cementing my Foundation to Beacon. They are at the moment working hard to get the launch underway.

We travelled home and although in rush hour Dartford Crossing was good.

What a wonderful day.

Thank you so much Beacon and thank you for the lovely flowers and wine.

 

 

 

Advertisements

A Diary of A Mesowarrior living with #Mesothelioma #asbestos– A crazy crazy week.

frustration

Its been one of those weeks, You know where you wish you could stop the world from spinning then realise its you that are spinning.

The traffic jams to the Marsden on Monday started the week even if the treatment went well but it is a long boring day and poor Ray is so spaced out by the time we get home but he was violently sick and went to bed early.

I know that deep down he is worried that he isn’t hear the results of the Bi-Op. We keep phoning.

Tuesday a Consultant phoned to say Ray had Lymphoma and that they will sit and wait to see what happens then a secretary phones to say can she book the appointment for Ray’s Op. ???

Please get it right.

Wednesday passes uneventful Thursday Louis has a haircut so he fell out with us and sulked all day.

Friday -yesterday Well a day of complete chaos.

We had to travel to London for a Foundation Meeting which Ray was Chairing so we were all prepared and ready for the off.

Got to the station and the train was delayed due to a disruptive passenger that had to be taken off the train a couple of stations before us.

This delayed the train so they had to put it on a loop line and we journeyed slowly to London.

At Denmark Hill the driver told us the train could go no further as a train was blocking Victoria on our line.

We all got out and had to get over to platform 1 where a Over Ground train took us to Clapham Junction where we got the Gatwick express into Victoria. All the south eastern trains were lined up going nowhere.

We met up with a friend and had a coffee and then journeyed on to our meeting.

A very lively event where Ray did a great job and so many problems got solved and so many actions for me to sort out, it was like the good old days of our Fire Alarm Company. It’s amazing how you fall back into it.

The pilot research grants are ready for people to apply for are now going to be advertised and we sorted how this would happen. At last we are moving forward. The Foundation was launched a year ago and it took a year to get to that point but at last we are moving onward and things will really happen in 2019.

We have 3 Mesowarriors on the board now which pleases me.

The meeting all done and dusted we went and had a coffee with 2 of the trustees and relaxed then made our way to the station.

Guess  who made a mistake and instead of getting a train from Charing Cross I said now the Victoria problem must be over now. Oh Dear !!

The Ramsgate train alongside other trains were delayed.

They finally said we had a train platform 1. That meant a long walk so everyone else was rushing ahead and clamouring into a 4 carriage train. We had to push our way in to getting a standing spot. A dear little 4 year old going on 40 sat on her case and got out her packed dinner. Her Mum had made sandwiches for her and cut up an apple.

She kept us amused until she got out at Bromley South. I was getting so tired of standing and a young  girl offered her seat I was so relieved as an hour of standing squeezed up was just to much. How can the get away with such a dangerous load. You feel like cattle as your herded onto 4 carriages.

Ray finally got a seat behind me at Rainham.

We were so pleased to get home and get dinner.

I found a message on the answer phone Ray has an appointment with the haematology department on Wednesday at the QE2M hospital  AT LAST !!!! It has taken since the 4th July ?

 

 

 

 

 

 

 

 

 

One good thing that happened though

https://anchor.fm/…/episod…/Demolition-News-Radio-147-e2khi9 I love it thank you Mark Im so pleased I spoke up today. I have wanted to say it for a long time but today you shared that your son was the camera man and In all my presentations is about protecting young lungs so that they stay healthy through to their old age. Just as we retired I found I couldnt breath and then I had a death sentence put on me of 3 months. Ok we all know we die but its a shock when your told when that day will be. So if I have saved one person Im happy today xx

Mark Said —Rightly Reprimanded – Why I should practice what I preach, and how a LinkedIn message might just have saved my son’s life:

 

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — SCANXIETY

 

 

 

 

 

 

 

Scanxiety

I was in a meeting this week and Scanxiety was bought up and a Oncologist didn’t understand what was meant by that.

It isn’t a new word as its been around ever since I have had Mesothelioma. Debbie Brewer talked of it in fact I think she named it as she used to get so paranoid about growth of the disease as we all do.

It is in every blog written by the patients.

The NHS are so short staffed and radiographers are in short supply so the results of our scans can be a long time so we patients start worrying more and more.

We would like the results the next day but that isn’t being reasonable.

Medscape Medical News wrote —

It’s a not part of the medical lexicon (at least not yet), but “scanxiety” is a word that cancer care providers would do well to know.

Giles Maskett wrote a great piece to show the view of both sides

You might not have come across the word “scanxiety” before but you will have no trouble getting its meaning. It doesn’t yet have a formal dictionary definition but it’s a word used by people treated for cancer to describe the feeling of dread associated with their follow-up imaging. Even someone who feels entirely well and knows that the chance of anything bad appearing on the scan is remote can suffer from profound apprehension around the time of the scan“scanxiety.” Some patients describe severe physical symptoms connected entirely with the process of undergoing an ultrasound, CT, or MRI scan and waiting for the results.

Radiologists are very familiar with this. A colleague who regularly performs follow-up ultrasound scans on children with cancer describes how just the process of making a measurement on the screenpart of the protocol for any normal ultrasound examinationcan induce panic in the watching family.

Rightly or wrongly, patients attach ever greater importance to the role of imaging in their management. In that context, the recent report from the Care Quality Commission into radiology reporting delays in the English NHS makes for depressing reading. The CQC found that in some areas thousands of patients were waiting weeks or longer for the results of their x-rays and scans. Not all of these are patients with cancer of course, but many of them are and a great many more will be worried that the scan might show cancer, even if that is not the specific concern.

Radiologists have our own form of “scanxiety”the experience of being faced with hundreds of studies waiting for a report, knowing that each one represents an individual whose life is on hold while waiting for the result. Knowing too that amongst themneedles in the digital haystackwill be some for whom an urgent report would make a real difference and others for whom a delay could be disastrous.

One anticipated contribution of artificial intelligence to radiology is the possibility of smart prioritizationindicating which studies contain significant abnormalities and prompting the radiologist to report them first. If I am a little cautious about the potential for reliable automated sifting of normal studies from abnormal, it is because I remember that one of the catchphrases of the whole body CT screening industry in the USA was: “We haven’t found a normal yet.”

The thrust of almost every current initiative in cancer management, whether it is targeted screening, faster diagnosis or personalized medicine is that more people will require more imaging more often. The UK is woefully under-prepared for this predictable surge in demand. If you haven’t come across it before, get used to the idea of scanxietywe are all going to be feeling more of it in the future.

Giles Maskell is a radiologist in Truro. He is past president of the Royal College of Radiologists.

https://blogs.bmj.com/bmj/2018/08/23/giles-maskell-scanxiety/

Heather Von St James wrote

Mesothelioma Checkup

Heather at Baylor 2016No matter how good I feel on a day-to-day basis, every six months, the reality of being a long-term cancer survivor comes crashing back. Even though I’m going to be celebrating 11 years since my diagnosis on November 21, I still get uneasy when the time comes around for me to get on a plane, head to Houston for my scans and to see Dr. Sugarbaker.

My “scanxiety” is nothing like it used to be. I used to get so nervous in the days and week leading up to my appointments, I found it difficult to not have anxiety attacks. As the years have gone by, then nervousness has subsided, and my thought process is different. I have been around the meso community long enough and know that at any time the cancer could come creeping back, but that is why I continue to see my specialist every six months, to stay on top of things.

So you see its something we Mesowarriors always have coped with and we help each other through the scary times talking about it is a great help.

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — @BOHSworld #FAAM Conference

 

 

 

 

 

 

 

I had the honour of opening the FAAM Conference at the Park Inn Manchester on Friday 8th November

A different sort of presentation as I didn’t just want to be talk about the disease but wanted to cover Where asbestos is found today.

By the time I had finished it was pleasing to feel that I had covered it well. Including all my videos that played as we have bought a newer version of power point so was nervous that all would be well.

 

 

 

 

 

Martin and I have been firm friends since last year when FAAM Launched in London it was great to still be around to be able to speak at the 1st conference they have held.

I love the video of that night

www.youtube.com/watch?v=dLIgwq5sEL8

 

 

 

 

 

 

 

 

 

Jonathon Hughes of No Time to Lose campaign spoke of working together to tackle asbestos related cancer.

Then my recommendation of Sean Fitzgerald and David De Vreede as I was enthralled with their work as they found the Asbestos in Clares makeup and I had helped them with finding the UKs supplies.

My fingers get in every pie

 

 

 

 

 

 

 

 

Sean from the USA

 

 

 

 

 

 

 

 

David from Holland

Then it was the turn of Asbestos Forum from Holland as well

 

 

 

 

 

 

 

Yvonne Waterman and Jasper Kosters

They gave a great talk about Asbestos in products when banning isn’t enough

 

 

 

 

 

 

 

John Addison Amphiboles and other fibrous mineral

Jean Prentice stood in for Garry Burdett heated fibre and when it is or isn’t asbestos

End of Day 1

We had a drink reception and then a meal before it was time for bed.

Day 2

Sara Mason Phase contrast light microscope viability

Ashley Hawkins  who I had met at Brunel University Talked of the work they do which had enthralled me when i visited them.

Then Jean Prentice stood in for Gary Burdett again she did so well what an interesting lady.

John Moore Gillon spoke  of Asbestos related diseases and their treatment. Bless him he kept mentioning Ray and I and when he finished. We did a standing ovation and he rushed of the stage hugging us and tears flowed.

 

 

 

 

 

 

 

 

Martin Gibson spoke of new developments and technologies and then Beacon Andy Lewis Thompson handed the floor to Bruce to tell us all about a new idea for enclosures. Its not in production but I have been invited to help them showcase it so watch this space xx

 

 

 

 

 

 

 

 

So we came to the end of the Conference and I was closing it so I gave them this for all the Mesowarriors past and future

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — My Scan results @The Royal Marsden, The Maggie Centre is taking shape as the builders are doing well.

 

 

 

 

 

Up at 5.30 ekkk we had set the alarm to late and so it was up and shower walk the dog and get out just to rush into miles and miles of jammed motorways.

It was from one queue to another so frustrating.

But we arrived at the Royal Marsden at 8.30am. I dashed up in the lift to get booked in at Oak Ward while Ray went and got hot chocolate and something to eat.

Bloods were soon done so I sat in the waiting room waiting for the Doctor.

He came along and he was full of a cold (man flu, he is Spanish and the nurses had convinced him he had man flu )

He turned the computer on and I asked had they got results for me. He thought I meant the bloods that I had just given I of course was waiting for the scan results.

He hadn’t checked and really didn’t know what they were. Gee the most important info needed and it is nothing to him.

He finally gave me the result, after he had made a phone call, that it was Stable. I was disappointed, he couldn’t understand that but I said I’m after a complete response again.

The marker tumour measures 19mm 3/4″ of an inch it hasn’t far to shrink so that is what I’m striving for.

After asking if he would like to sit in my surgery now and talk about his cold making him laugh, we were out and sitting back and waiting for the bloods to be down.

At 12.30pm he came and whispered to me I have just signed your drug off. Oh dear they were so slow and I knew then that it was going to be a late day.

I wish we lived nearer or there were shops around as sitting there all day is the most tiring thing we do. Ray sleeps I people watch and then wake up and Im so scared Im snoring.

I strike up conversations with other patients a lovely man was reading my booklet and then realised it was my photo staring back at him.

We went to the canteen and had another drink bought some sweets all just to drag the day out.

At 2.45 we were at last asked to go to ward.

We were told they are trying to get a new machine in the Pathology to speed up the process of making the drug up and getting it to the patient earlier. It can’t come soon enough.

They have a 5 year plan https://shared-d7-royalmarsden-public.s3-eu-west-1.amazonaws.com/files_trust/s3fs-public/The%20Royal%20Marsden%20Five-Year-Strategic-Plan_040518.pdf

More than 360,000 people in the UK are diagnosed with cancer each year, and it is now estimated that one in two people will develop cancer at some
point in their lives.

I can tell these figures are going up as the hospital was so crowded yesterday

So with my Number 9th infusion we travelled off home and we thought we would be in the rush hour traffic but we were able to dive straight through and was home at 6.15pm so not so bad after all. Today we are exhausted even though we didnt do anything yesterday We have to pack for our adventure to Manchester tomorrow the the FAAM

2018 will see the first conference organised by the Faculty of Asbestos Assessment and Management (FAAM), which will see a combination of plenary sessions, technical sessions and workshops. The conference will bring together researchers, practitioners and regulators, and other experts to discuss the latest developments in asbestos assessment, management and… Details
When: November 8–9, 2018
Where: Manchester, Manchester

https://www.maggiescentres.org/our-centres/london-campaign/maggies-royal-marsden/

 

 

 

 

 

There is building work going on and a Modernising infrastructure – Modernise estate and facilities through the opening of the Maggie’s Centre
in 2019 and the Clinical Care and Research Centre in 2021 at Sutton where it will  Maximise opportunities for translational research through the London Cancer Hub
proposal, working with local partners to attract investment in the Sutton estate
They will Increase surgical capacity, and invest in systemic therapy facilities and continue to replace radiotherapy machines to provide
state-of-the-art technology for patients.
The plans are to Invest in diagnostics and leading-edge imaging equipment and genomic sequencing
They will Invest in the Trust’s capital programme, supported by external financing and surplus delivered in excess of plan
Deliver the Information and IT Strategy, including upgrades to the network and Wi-Fi, new Laboratory Information Management System (LIMS) and data
warehouse, and replacement of the Electronic Patient Record and Clinical Research System

So much is planned it is hard to realise this is a Cancer Hospital that relies on its Charity.

https://www.royalmarsden.org/

With your help we can ensure our nurses, doctors and research teams can provide the very best care and develop life-saving treatments which are used here in the UK and around the world.

From funding state-of-the-art equipment and groundbreaking research, to creating the best patient environments, we never stop looking for ways to improve the lives of people affected by cancer.

Money raised by our supporters means The Royal Marsden can continue to provide the best possible treatment and care for patients.

Here’s where we spent that money in 2017-2018.

Life-saving research – £2.7m

Pioneering research is absolutely critical to extending, improving and saving the lives of more people diagnosed with cancer. That’s why we’re dedicated to helping The Royal Marsden run life-saving clinical trials that give patients at the hospital, across the UK and around the world access to the latest breakthrough drugs.

Through the five year, £15 million grant to support translational research at The Royal Marsden, we have funded work in the West Wing Clinical Research Centre, where patients on clinical trials are treated in a custom-built setting with dedicated research staff.

We also continued to fund specialist staff working in the Biobank at the National Institute for Health Research Centre for Molecular Pathology, a facility that is invaluable to research and the future of personalised treatment.