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This week is calmer after all the filming we did last week.

Not just the ITV news but Ray and I made a film for training purposes all to do with ships. That will take a long time to be finished so I will share when they have been published.

Then Saturday and Sunday I spent all day on twitter and live stream as it was ADAO’s Conference which I will Blog another day as today has been an important day for us.

I  went to the Royal Marsden to get my results of my scan form last week.

We got there early and instead of going in the usual room they put me in the day ward and gave me a bed.

This isnt unusual if there isn’t a chair because they are full up so that was ok even if my mind was running overtime. we do get worked up with scanexity its just something you can help. You know your whole life can change in one scan result.

My bloods were taken and then the doctor came round to see me.

The scan result is my Mesothelioma is growing but its still to small to take another bi-op. Their decision is to wait and let it grow larger and then have another bi-op.

The drug had worked 14% shrinkage from the start of the re-challenge so its grown 4% over 3 scans. So thats in 24 weeks it has only grown 4%. The Meso is very small that it would be impossible to get a bi-op yet.

That is great news, no really as without the trial drug Pembro it would be growing rapidly so the drug has really slowed things back.

He asked about my ankles swelling, sitting there in a chair they were very swollen I said it was from Chemo days but he said Its because I had my veins striped years ago when I had Vicarious Veins. He said that I needed my veins to drain the fluid and didn’t I get told I would have a problem when they did the op.

He is the first one that has been able to explain why I have a problem.

So I will stay on Furosemide  but I said I couldn’t take them today as you never know when you will get caught in a traffic jam and I would be in trouble. he laughed and agreed.

The next thing I know my nurse came in with a tape measure and measured me up for some lovely green socks called Fitlegs

FITLEGS Anti-Embolism Stockings - How to Use - YouTube

It was great that we had others to talk to as the day was soooo long.

We arrive for 8am so that we are there for 8.30am.

There was a training today so we waited and bloods were taken by 10am.

We didnt get the drug up to the ward until 4.20pm

Then my canulla had been in so long it had bent so another one had to be fitted. Rex is the only one that can deal with my veins and valves so he popped in to do it. We got out of there 5..20pm which meant we arrived home 7.10pm thats a long day when you have got up at 5am.

But I cant moan as this is my life when on a trial and they have saved my life for 5 years now.

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After a lovely Mothers day with family visiting and an Indian meal to wade through

We had to get up today and travel to the Royal Marsden early for my Scan day.

We had a phone call from ITV News to ask if they could interview me as figures came out today

Asbestos is killing 5,000 people a year, two decades on from the toxic material being banned, a new report has shown.

The Institution of Occupational Safety and Health (IOSH) said people were still being exposed to asbestos, 20 years after it was outlawed in Britain.

More than 130 companies or individuals have been ordered to stop work activities over the past year because of non-compliance with asbestos regulations, said an IOSH report.

Asbestos is present in at least 500,000 buildings built before 1999, said the report.

IOSH chief executive Bev Messinger, said: “It is unacceptable that 20 years on from asbestos being banned in Britain, organisations are still potentially putting at risk the lives of employees, their families and other members of the public.

“Thousands die in Britain every year from cancers like mesothelioma, while many more are diagnosed with it.

“All this is preventable through good occupational safety and health. It is time for organisations to wake up and realise how dangerous asbestos is. There are no excuses.”

Asbestos is killing 5,000 people a year, two decades on from the toxic material being banned, a new report has shown.

The Institution of Occupational Safety and Health (IOSH) said people were still being exposed to asbestos, 20 years after it was outlawed in Britain.

More than 130 companies or individuals have been ordered to stop work activities over the past year because of non-compliance with asbestos regulations, said an IOSH report.

Asbestos is present in at least 500,000 buildings built before 1999, said the report.

IOSH chief executive Bev Messinger, said: “It is unacceptable that 20 years on from asbestos being banned in Britain, organisations are still potentially putting at risk the lives of employees, their families and other members of the public.

“Thousands die in Britain every year from cancers like mesothelioma, while many more are diagnosed with it.

“All this is preventable through good occupational safety and health. It is time for organisations to wake up and realise how dangerous asbestos is. There are no excuses.”

https://www.telegraph.co.uk/science/2019/03/31/asbestos-still-killing-5000-britons-year-20-years-ban/

So that is why I was sitting in the sunshine at the Marsden talking about my life and asbestos.

Ray and i went in and I signed in to have the canula fitted and then went to the scanning room ans the Marsden allowed filming of me going into the room and settling on the scanning table.

The room was crowded ha ha !!

The scan was soon completed and we were free to go home where we just got in in time to see the News at 1pm and there I was. all 5 mins after an hour of filming.

It doesnt matter just so long as the message gets across that Asbestos is still in our life and we must still protect ourselves.

Global #Asbestos Awareness Week:

7 days, 6 types of Asbestos.
Meet the cast of the "Dirty Half Dozen"… pic.twitter.com/pqxwFMCiSB

— ACS Risk Group (@ACS_RiskGroup) April 1, 2019

This week starts the Asbestos Awareness Week I love this GIF

Global Asbestos Awareness Week April 1 – 7 — Day ONE: World Health Organization and Elimination of Asbestos-Related Disease Worldwide Each year, the Asbestos Disease Awareness Organization (ADAO) dedicates April 1-7 to increasing awareness of asbestos and preventing exposure by bringing together experts and victims from around the world to share, learn, and take action. 

I have sent a tribute from the uk and I will be opening the conference with a video I have already sent to ADAO

https://www.asbestosdiseaseawareness.org/archives/50846?fbclid=IwAR1TW4wrPr7NTi7YXXRpNVRA7m2Sq0539nLPB4yWOFduUA-8PciOT6RmGvw

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We travelled the same way as if to the Royal Marsden but turned to the left not right at J8.

We came to the pretty town of Reigate and then on to Ironsbottom Sidlow.

The gates were shut so there was a queue waiting to get in.

We soon were sipping a drink and greeting people.

So the day began

Rebecca Crosland BESA Health and Safety Advisor spoke very professionally. She really knows her job and gave a great talk on Asbestos in South Africa  and then her work here in the UK.

She spoke about ASBESTOS AWARENESS TRAINING,

  • The properties of asbestos and its effects on health, including the increased risk of developing lung cancer for asbestos workers who smoke
  • The types, uses and likely occurrence of asbestos and asbestos materials in buildings and plant
  • The general procedures to deal with an emergency, e.g. an uncontrolled release of asbestos dust into the workplace
  • How to avoid the risk of exposure to asbestos
  • Asbestos Video clip

  • FACE FIT PRESENTATION was given by Paul Chamberlin-We Fit RPE Ltd (Fit to fit accredited)
  • Why RPE must be able to provide adequate protection for individual wearers.
  • Why RPE can’t protect the wearer if it leaks.
  • A major cause of leaks is poor fit – Why tight-fitting face pieces need to fit the wearer’s face to be effective.
  • The daily shave and employment contracts
  • Why fit testing will ensure that the equipment selected is suitable for the wearer.
  • Delegates will be able to try the masks and find out why face fit testing is vitally important.
  • A practical face fit session Always enjoy Pauls presentations he is so dedicated to keeping peoples lungs safe.

Then it was us Ray and Mavis Nye Presentation A mesothelioma Asbestos Journey

It all seemed to go down so well and we did enjoy the hospitality but a little secret — Paul put the wrong presentation on for us as we used his computer. That truly throws you so remind me to make sure that doesn’t happen again xx

Beccy was so kind as to Donate £100 to MNfoundation  and James Johnson of J&L ASBESTOS RECRUITMENT Gave a handsome Donation. It always makes me feel so humble when this happens peoples kindness amaze me.

Thank you to all those that donated we will do so much for research into Mesothelioma together.

https://www.thebesa.com/ 

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Today has been a special day as Joanne Tatum and Maureen Cooper had arranged an event for the Mavis Nye Foundation at  The Hertford Green Hall.

We travelled early so the traffic was so good and we arrived early Maureen and Jo welcomed us.

The event was in aid of Bruce Coopers 1st anniversary of his passing.

It doesnt seem that long ago when i got this message –

Dear Mavis, My lovely Dad, Bruce Cooper, passed away today at home surrounded by family and friends. He never gave up hope that he would beat this awful disease and fought to the end. He is now pain free. Dad was a loving and caring husband to my Mum, Maureen, an incredible Dad to George and I and the best and most loving Grandad ever to Meg, Tom, Amelie, Liliana and Sophia. He will be forever in our hearts but missed so very much. Night God Bless Dad xxx

They immediately thought of the Foundation and raised donations at the funeral of this special man  and I got this message We can now confirm that £4218.36 was raised in my Dad’s memory for The Mavis Nye Foundation Thank you all so much!!!

Jo and Maureen then came to the House of Commons when I had to attend a meeting they are both always behind me spurring me on in my journey

I have enrolled them onto the Board of Trustees and so now I have 3 Mesowaariors on board. I had to make sure the Foundation went on in the right hands when Im not here to carry on and Joanne’s lovely family I just know are the right ones.

So that is the story behind today.

I think the photos say it all except guess what The message tonight was —

Absolutely thrilled to tell you that we raised £1300.00 today in Dad’s memory . Thank you both so much for coming to join us today xxx

What an amazing sum and just in time for we have the closing date looming for the applications for our research grants.

The first one we issue I have decided will be in Bruce’s name.

The Mavis Nye Foundation Grant  Dedicated in memory of Bruce Cooper

I just know Joanne and her Mum will be at the presentation night

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Wow what a week !!! Amazing week.

Monday saw us at the Royal Marsden for my treatment. I was talking about the new vein finder that Ray had in the K&C hospital so they were very interested and I promised to find the name.

Rex though is so proud of his machine and the Royal Marsden has had them for about 4 years.

I asked at the K&C and this is the machine that is being used a proper scanner https://www.sonosite.com/uk/products/sonosite-x-porte?fbclid=IwAR1LS6xZYu5Xtl-xj6caup5egIf2YpKkHRUeSXIlRLk4NmU5q7Gk02MuGYI

Oh how life is being made easier as all of us know what it is like to end up as a pin cushion and veins running out of blood etc.

Ray had the last of his treatment Tuesday. They knocked him out again and he slept right through his treatment. I sat next to a lovely couple. The lady has two different cancers. Ovarian and stomach. They were lovely and Im glad they were there as sleeping beauty was asleep all the time.

He woke up to come home and then came over very bad and wobbly so I said bed !!! and he slept until Wednesday morning.

He looked so much better so caught the train to London to be at my board meeting.

First we had arranged for Paul Cook who is a good friend as he is a mesowarrior and is so pleased we met up and I gave him a lot of help. I just dont realise how people see me so it was lovely to meet up and that he is doing so well after his Op.

So with Paul, his wife and Accountant a fund raising partnership has been born. Very exciting and we will keep reporting how we are going throughout the year. We said our goodbyes.

Then we welcomed in the Board Members.

Joanne and Maureen our new members who are Mesowarriors.

We will be attending their coffee morning in Hertfordshire Saturday week so i will have lots of photos from that event. It is the first Anniversary of Mesowarrior Bruce and this will help them get through the sad day. If you are interested please message or email me for details.

Happy Birthday to Harry Steinberg QC –we surprised him with a cake Mary arranged and we bought him a jumper with a shirt collar in. harry lives such a busy life he will be dressed in a minute now he he !!

Harry and 12KBW are going to have a seminar at The Barbican and raise donations for the Foundation again the year which is lovely.

Annual-Asbestos-2019-Programme-1

12KBW Annual Asbestos Seminar 2019

We are delighted to invite you to our Third Annual Asbestos Seminar. This year we focus on our soon to be published book: Asbestos Law & Litigation. 

This seminar – chaired by Harry Steinberg QC – will feature talks from the authors of Asbestos Law & Litigation.

Talks will include an update on claiming for the cost of immunotherapy, a detailed consideration of knowledge of asbestos risks and a panel considering issues on breach of duty.

Click here for the full programme.

This is a free event and places are likely to be booked up quickly – please follow the link below to reserve your place.

The seminar will start at 2.00pm, with registration from 1.30pm and drinks from 5.30pm.

This event will be accredited with APIL CPD points.

DATE

Thursday 9th May 2019

TIME

13:30 – 17:30

VENUE

Barbican Centre, Silk St, London, EC27 8DS

https://www.12kbw.co.uk/events/12kbw-annual-asbestos-seminar-2019/

We carried on and discussed our 5 year plan I love the discussions as we worked through the Agenda. So we are all set up and we are growing at a faster rate than I could envisage.

We were two happy bunnies as we travelled home

There is a message here that if you have downloaded a application form –and we know 247 have downloaded the form-please send or email in soon as the last date is drawing near 31st March 2019.

https://www.mavisnyefoundation.com/mavis-nye-foundation-research-grants.html

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Mesothelioma Uk celebrated Womens Day in Manchester it is the first time and I bet it isn’t the last. What a success !!!

Many Lawyers helped to make it a wonderful day for the patients and Ray and I were invited on the Field Fisher Table by lovely Bridget Collier.

First though we travelled up the day before as I wanted to be there early Friday morning to meet everyone and have a long chat.

I couldn’t believe that as we pulled into Manchester station from London and I was looking what door to use to go out to find the hotel I walked straight into Mary Mulhal,My Chair of the Foundation. How amazing was that. She is always there when i need her !! We had a laugh and and a hug and then I asked a policeman where our hotel was. Alway ask a British Bobby.

He pointed the way and it was out the back, down two flights of the escalator and across the road.

https://www.google.co.uk/maps/uv?hl=en&pb=!1s0x487bb1966158835b:0x37cd108581dac93b!2m22!2m2!1i80!2i80!3m1!2i20!16m16!1b1!2m2!1m1!1e1!2m2!1m1!1e3!2m2!1m1!1e5!2m2!1m1!1e4!2m2!1m1!1e6!3m1!7e115!4shttps://lh5.googleusercontent.com/p/AF1QipOX3gdgoDneFrNZfQZIbjDZbWlmlPgyWZFgLgwn%3Dw265-h200-k-no!5smacdonald+hotel+manchester+-+Google+Search&imagekey=!1e10!2sAF1QipOX3gdgoDneFrNZfQZIbjDZbWlmlPgyWZFgLgwn&sa=X&sqi=2&ved=2ahUKEwjenKOkxvXgAhUEHKYKHYCPAhMQoiowCnoECAYQBg

A lovely room and bathroom all for £114.00 a night . that was wonderful

After booking in and have a rest in our rooms as Mary had to been to see a client and had to work and catch up, we went down for a coffee.

It ended up with us having a Mavis Nye Foundation meeting as we have a Board meeting next week so it was good to put together points to be raised.

A five year plan has been sketched so we can talk it to the table. So exciting we are moving forward so fast now. Thanks to Hugh James.

I had had so many phone calls from Paul Chamberline and Lee of Wefitrpe Ltd as we travelled up from London as he had been to a meeting and had sold all the Sundstrom masks and was putting the money in The Charity Account. He had plans on selling the next lot that Sandstrom have kindly donated and are so pleased we are raising funds this way. Well I just had to thank Paul in some way that I suggested he became a Ambassador for the Charity. He has become my agent anyway and has me talking at so many training sessions and Conferences. He goes above and beyond his duties ha ha !!!

He was over the moon when I suggested it so we have an Ambassador. xx

So our team is getting stronger and stronger, as we have so many supporters its exciting as my Legacy will go on and on after my passing as the Meso is growing so I never know. Mags Portmans death has shook me to the core so I must get my affairs in order.

We had a lovely meal in the restaurant and then an early night

Woke up bright and early and met Mary for Breakfast and coffee then we had to pack the cases as we were vacating the room to travel back after the event.

People started arriving and it was wonderful to meet so many as they cuddled me and we all hugged. The love in the room was wonderful.

We then went into Lunch. Ladies that Lunch.

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It is Womens Day on Friday and Ray and I are travelling to Manchester to celebrate with a group of women we so admire.

Mesothelioma UK Nurses do so much to help us Mesothelioma Warriors and have always been around for the whole of my 10 year journey with Mesothelioma.

I became an Advocate for MesoUk and have now built my own Charity up to help the cause. I wanted to have my own Grants for research and we have now achieved  that with the first ones being presented in May.

The next passion is for me to finance a Mesothelioma UK nurse in the name of the Foundation and our own Mesowarriors. These plans are going to be discussed at our next board meeting and more fund raising to carry this wish out.

I do admire Liz Darlinson for all her dedication I know how hard she works as we have been very close friends. She gets a Mummy hug when we meet up.

Then Mary Mulhall from Hugh James Who has agreed to be the Chairperson of the foundation we now look forward to taking the MNFoundation to higher limits. We work together so well and I now know I leave a legacy in the hands of a great board headed by Mary.

So many nurses at the Royal Marsden

There have been so many women that I have met it gets hard to pick just one or two.

People like UKATA

I think just to celebrate I will just do a picture gallery and just say a huge Thank you to all the women in my life and hope they do a mens day as I know so many lovely men as well x

Dr Mags I miss you so much x

Yvonne and Jasper

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A quiet start to the week as I wanted Ray to rest I laid my new mats down that I had bought for the passage and kitchen and the new carpet for the lounge.

We did go to the Marsden for my treatment which went smoothly. A new doctor that is a shy man so the joking want there like my lovely Spanish Doctor. So it was a more serous face that I wore and so I was out and down to the restaurant quickly.

Drug was up later and soon in my veins and I was topped up.

I have found out the new drug that matches my DNA is called HYPER !! sounds right for my DNA!!

Matched with Prembro we have to see if it will kick Meso as its used for Myeloma. One more scan in April and we might find out. trouble is I will loose my hair. I have a wig which Im not happy with so I will have to sort another one or wear a turbine which I dont really like but no way will I go bald. Sorry I just wont. My hair has always meant a symbol of how I feel. If it is untidy or long I feel rough. I like a short cut and still use hairspray.

When you think of all the back combing I have done and hairspray used over the years to look good.

So that is a plan.

We visited London on Thursday to visit our new Head Office in Gresham Street.

We have had a revised board of trustees for the Mavis Nye Foundation who can now Welcome Officially our new Chairperson is Mary Mulhall of Hugh James.

We sat with Richard Green and have bought together new plans for the future. All very exciting. We now have 3 Mesowarriors on the board so I feel that it is all set up if things dont work out with my illness, The Foundation will carry on in the hands of people that care about Mesothelioma and the Mesowarriors.

It was raining well by the time we got home so that lovely sun we have seen for so long has gone –shame.

The car was covered in red rain as over night it rained heavy and the sand from the Sahara had blown our way.

Up early this morning Rays turn today.

He was soon plugged in and the drug going through his veins. I get bored. I bought the Sun –Yes I know not one to buy but I like their crossword as it is easy

But I could even get one. That,s the state of my mind. Numb!! can you blame it. ha ha !!

Ray only has one more though but we have had to change both our dates as Friday we go to Mesothelioma UK Ladies Lunch where I’m going to give a talk to bring everyone up to date.

It was early escape today has they had put the drug in faster as ray has really tolerated it well. Im so pleased he has been so positive I have trained him well and he feels like

he has a problem but cant comprehend he has Cancer. A sort of denial which is how I have been. You have to live along side Cancer and fight it.

So now we are at the weekend again and Mar 1st how quickly the months are going.

I have to mention the Episode of Warren BBC1.

This is only available for 25days so please watch and send me your view. From 5.49

https://www.bbc.co.uk/iplayer/episode/m0002v37/warren-series-1-1-the-pond?fbclid=IwAR1qjMeAX0dB_CUO26UwyLCU_vSRHrxknDZKB8iR7qn9HafVVnuDWKR1z4U

I have made a complaint to the BBC —
I kept getting complaints about Warren a Mesowarrior said — Just wondering if you saw the new sit com, Warren on BBC 1, Monday? Couldnt believe how irresponsible the BBC were when they showed Martin Clunes character Warren going out in his car with his stepson to fly tip some mud and asbestos from the roof! When the son asked wasn’t it dangerous to be in the car with it Warren said well you’ve been breathing it in from the roof for the last 3 years. When asked again if it was dangerous, he replied yes, it is, that’s why I’m chucking it away. Can you believe that, Mavis! So irresponsible.

I complained and the answer is not satisfactory !!!

The answer to my complaint, so they really do not see the point that they shouldnt have made light of it in the first place Making light of Asbestos that they had lived with it for years so its not dangerous was wrong !!!! answer received :-

Dear Mrs Nye BCAh

Thank you for contacting us about this episode of Warren. We are sorry to hear that you feel the fly-tipping element of the story was inappropriate.

Warren was clearly in the wrong and we see more than one character pointing this out to him. At the end of the programme we see the police taking steps to question him about the incident. With this in mind, we don’t believe that viewers will be minded to imitate any of the behaviour they have seen in the show.

We have however shared your views with the producers of the programme for their information.

We hope this allays your concerns, thanks once again for contacting us.

Kind Regards

BBC Complaints Team

hmmm!!!!

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

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Its been a quiet week as I wanted Ray to rest and let his drug work.

He has been good and took life easy but he has no side effects so it is looking good and that his treatment like mine isn’t going to interfere with our day to day work.

Lots of computer work and telephone calls have kept us busy and the sun has shone all week. February and we have had weather like Spain, how amazing is that. Walking Lou has been pleasant.

We collected the new car and Whitstable Harbour Garage has been wonderful as usual. We all rely on them around here and we usually get a smashing logo put on the back but the have stopped doing that now.

We travelled to Canterbury on Friday for Rays treatment. The surprise was the nurses singing happy birthday to him and giving him a present. That bought a great big grin to his face.

His treatment was put in faster this week so it was better. We met a couple of friends that we meet up with at our LASAG meet. A lovely Mesowarrior and his wife. His treatment was longer than ours so we came away earlier. Ray slept most of the time as the histamine tends to do that to him but it’s not a bad thing really as the day goes even quicker.

For non-Hodgkin lymphoma, Rituximab is a monoclonal antibody, which is a type of targeted drug.
Rituximab is a treatment for chronic lymphocytic leukaemia (CLL) and some types of non-Hodgkin lymphoma. It is also used for some non cancer related illnesses.
You usually start by having rituximab once a week for 4 weeks. You may have treatment every 3 weeks if you have the rituximab with other medicines.
You often have rituximab with CHOP chemotherapy to make R-CHOP. You usually have 8 of the treatments, so the treatment lasts 6 months.But Ray is having the drug on its own so just 4 weeks.
If the initial treatment works well, you may then go on to have further rituximab treatment as maintenance therapy. You have this treatment every 2 or 3 months for 2 years.

Rituximab targets a protein called CD20 on the surface of the leukaemia and lymphoma cells. The antibody sticks to all the CD20 proteins it finds. Then the cells of the immune system pick out the marked cells and kill them.

So it all seems straight forward Except he has a very slow heartbeat. He could be super fit ???? or there is a reason and he has been told to go to see his GP Generally, you want a slow heart rate when you’re resting. It’s a sign of good health. But if it’s too slow, it could be a symptom of a condition called bradycardia.
Normally, your heart beats 60 to 100 times a minute when you’re at rest. But with bradycardia, it goes down to less than 60 beats a minute.
This might not cause a problem for some people. But it could be a clue that you have an issue with the electrical system in your heart. You need to see a doctor who can figure out why it’s beating slowly and if you should get treatment.
Heart Basics
Electrical signals travel through the heart’s four chambers — two on the top called the atria and below them, the two ventricles. These signals prompt it to beat in a steady rhythm. But pulses don’t always fire off as they should.
This creates what’s called arrhythmias, or abnormal heartbeats.
Some conditions cause the heart to beat too fast or to flutter. With bradycardia, it’s the opposite. The electrical problem slows down the time in between heartbeats.

We are going to wait until he has finished treatment as Ray feels he is going through enough at the moment.

I do agree.

He came home and he came over all funny again. Shivering so I said BED!!! which he did and felt so much better laying flat. He slept well all night and felt so good the next day.

We have relaxed all weekend and now ready for me to go to the Royal Marsden.

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This week has been very very busy.

Marsden on Monday

Bought a new car on Tuesday as we need a younger car to keep traveling to the Royal Marsden as my scan is showing growth and a new drug on the horizon for treatment we know we have to keep driving.

There are plans that we could go by train in an emergency or if Ray is ill in his treatment for Lymphoma.

A new car is all bought and we will pick up this Monday.  We have always loved quicky cars says me that loved and droved Skodas when all the jokes were around.

So the way the top goes right down on this car fascinates me, and the eyebrows make me laugh.

We attended the LASAG meeting and listened to a Leigh Day Lawyer explain about the legal side of mesothelioma so that was an interesting day.

Wednesday we went to London to the Foundations board meeting and then Thursday we were back in the same area to present a talk to Sir Robert MacAlpine Company.

Wow!! I was so in oar of being asked to talk here.

The Company is rebuilding London with so many great projects even the site that fascinates me as we arrive in London by trial. Battersea Power Station

https://batterseapowerstation.co.uk/sitemap 

How it will look when completed.

Broadgate Estates where we presented our talks is further round new Liverpool Street Station

Ray and I were asked to tell our story in such a grand place.

We arrived and met such lovely people and couldn’t believe the room was crammed with people from all the various sites in all different employment within the company.

The room was so quiet and so intense that I couldn’t judge whether they found it interesting. They were so young to us but when we finished so many spoke and asked questions. We really did hit home that safety is the most important word.

Thank you to everyone that was there Especial Valerie you made us so welcome x

I will post the video that they did when I receive it.

With all that behind us, we came to Friday Rays treatment day at Canterbury.

We arrived early as neither of us could sleep.

It was weird walking into the day ward exactly 10 years ago when all my story started and now it was Rays turn with a different cancer Lymphoma.

https://www.teenagecancertrust.org/get-help/ive-got-cancer/types-cancer/hodgkin-lymphoma?gclid=EAIaIQobChMI1Zzpj-y_4AIVS7HtCh1zfQG1EAAYASAAEgIxl_D_BwE

Lymphomas are cancers that start in the lymphatic system – a network of glands and thin tubes that run through your body. If you have Hodgkin lymphoma, certain types of white blood cells in your lymphatic system – called Reed-Sternberg cells – go haywire. The cells multiply and collect around glands and other parts of the lymphatic system, causing tumors to form. And the Hodgkin bit? That’s Thomas Hodgkin – the doctor who discovered this type of cancer back in 1832.

He was given paracetamol and an infusion of antihistamine and steroids to prepare his body for any side effects of the drug, an immunotherapy drug, rituximab.

They start off very slowly and they monitor the vital signs every 15mins then every half hour. Increasing the speed of the drug.

Ray slept through most of it with me saying “How do you feel now”every time he stirred.

The ward has got so much busier than we were here 5 years ago and yet the staff hasn’t been expanded so when the beeps on the chemo machines bleeped there was a long wait for patients to have the bags of drugs changed. The old story of the NHS isn’t it.

It was a long day and at 5.30pm we were able t walk out into the sun and drive home.

Ray sat on the settee and fell asleep so I made him go to bed and then he looked really rough.

He came down the passageway to the bathroom later and looked better and he seems to have slept all night. Just waiting for him to stir to see what he feels like today.

So that was our week. the highs and lows of a Patients and Carer with Cancer. The roles reverse depending on what day it is I’m a patient on Monday and carer on Friday and vise the versa for Ray. We will win through

https://www.mavisnyefoundation.com/

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