A Diary Of A Mesowarrior living with #mesothelioma#asbestos Busy Zooming still and a party night at Royds Withy King @RWKIDTeam

The weird days are going on and on but we are tucked in safe as we have no hospital appointments. We are not divorcing either ha ha !! Is a wonder as we have only our own company each day.

Now the second wave is coming for the winter so its a case of pulling up the draw bridge and staying behind the door.

Thank goodness for Zoom.

We had a great evening last week as Royds Withy King held a competition.

We are launching a Vintage themed Poster Competition to raise funds for mesothelioma charities. All you need to do is recreate your favourite vintage poster – using props, costumes, pets..!

Will you be the iconic Rosie the Riveter “we can do it” – you may decide to “Dig for Victory“ instead – or maybe “Fit Men Wanted“ is more your style!!

We had a laugh and it really was a party atmosphere a great successful evening.

The Spitfire one which was great as it does really depict the wartime so well everyone loves the spitfire. This one actually did carry my name under the wing as Royds Withy King team had sent my name in to be carried on the wing alongside so many other names and then the plane flew all around Kent to say thankyou to the NHS and i say a huge thank you to

Jennifer Seavor@jennifer_seavor

helen childs@HelenChilds_rwk for arranging this fun night

Then the rest of the week I also had research Zooms with Surrey Research, Kent Macmillan as a patient rep to help put together a chart for the GPS 2 week wait.

Monday I popped into HASAG Coffee morning so it is great to talk to so many friends I was made so welcome and it was great to be able to talk about how we were feeling in the lock down.

The diary is full for November so I have a lot to look forward to I will report back.

A Diary of a Mesowarrior living with #Mesothelioma #Asbestos — A busy week of zooming and webinar

Its been a hectic week trying to keep a my from thinking to much about hospitals and treatment. I have had a phone call and I now know my scan is Dec 30th and my Scan is Jan 26thso that’s all booked. Christmas is free and I can snuggle in with the family.

Last Friday was Mesothelioma UK Patient Carer Day and it was great on Zoom. I spent the day in the office glued to the computer.

One week ago we held our 15th annual Patient & Carer day (virtually) and were pleased to be joined by almost 200 viewers.

We’re grateful to our speakers who talked about the latest on mesothelioma clinical trials, treatments and research.

For anyone who missed it, or if you’d like to watch again, the videos of the event are available on our YouTube channel at https://www.youtube.com/playlist…

We had our son and DIL visiting on Sunday and I managed to cook great Lamb Hocks mashed potato and peas it was lovely and the whole day was very enjoyable. Love having face to face contact we really miss that.

An Asbestos All Party Meeting at the House of Commons with MPs involved was really interesting but sad to learn that people making claims for DWP Scheme has been held up. Dast have said 250 claims are still pending to be processed by the Department of Work and Pensions for victims of asbestos related diseases. These figures are purely from groups who are members of the Forum, the true number will be many more. Furthermore, it is believed that at least 16 victims have, sadly, died before receiving their entitlements to Industrial Injuries Disablement Benefit (IIDB). We demand assurances from the Government that they will take action to resume processing these claims without any further delay.

There are further injustices, the Workers Compensation Scheme (lump sum) awards are based on the percentage awarded at the IIDB medical and the person’s age at the time the IIDB is awarded and not the date the claim was made. This inevitably means, with the ongoing delays, victims will be older by the time they receive their payments and, therefore, missing out on compensation.

We need assurances that the Government will give a timetable of when these claims will resume.

So if any of the Mesowarriors are waiting please contact DAST this just isnt fair.

Another great Zoom was with IOSH where a dear friend gave a wonderful talk on Face Masks Gary Pharo really knows about masks and with so many counterfeit ones we do have to be careful as they are so dangerous.

So here we are at a Friday and I had to catch up on the housework that I had neglected its worse than being at work before I retired

Mavis Nye Foundation News letter https://ramos72.wixsite.com/mnf-news-page?fbclid=IwAR0UGi-b7tYUeHeEgWcmRXtK-v–LlwTWYGD_2fBr7903_yj9GFOptcJcAA

. https://www.mavisnyefoundation.com/my-donate-page.html

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos —- Scan result day and The CNS Nurses at Kent & Canterbury Hospital are now sitting comfortably

I had a phone call Monday to attend the Royal Marsden today at 10.15. my mind has been working overtime as I thought its got to be bad news or they could have talked to me on the phone. I got really negative and that’s not like me.

So we set off today and arrived thereat 10am. Ray settled down in the car and i went through the door having my temperature taken and a a badge put on me that I had been done.

I waited on my disc to keep me spaced out in the queue to the desk. I was given paperwork to have my bloods down.

The ticket said no 41 and the number on the wall was 14 OH dear!! but surprise! a nurse called my name.

Bloods taken and I went back to the waiting room but she had followed me and called me again to be taken to the waiting are for the Doctor.

I didn’t have time to panic.

The doctor told me my scan showed slight growth so what did I want to do. We had a long chat as there isn’t a trial to suit me. So we have decided I will have a scan every 3 months but to contact if I get any pain or lose of feelings in any part of my body as the Meso is on the spine where all the nervous system is. I could get pins and needles in arms or my back so just report anything what ever it is.

I can have radiotherapy so I said if needed I will have that at Kent and Canterbury but could I have scans at the Marsden so you don’t forget me. She assured me that wouldn’t happen but yes I will have a scan in January. I said I will just enjoy Christmas then.

So that was it I came away and shocked Ray when I opened the car door at 11am. But it was good news so we are happy.

When I got home Toni the Meso UK Nurse, that is sponsored by The Mavis Nye Foundation,  messaged me over a lovely photo

This has pleased me as I had helped her to replace their old chairs. She had turned to me as a charity.

I contacted Helen Childs of Royds Withy King Just to ask if they had any spare seeing as everyone was working from home. It was amazing that they had some spare from when they replaced theirs recently.

It was meant to be

Toni was thrilled and so were all the nurses bless them. They can now throw theirs out now.

Toni had also contacted Richard Mullins of LASAG as they wanted some more and they agreed to Donate so great that we as charities have been able to help out.

A huge thank you to Royds Withy King and LASAG together we have made the CNS’s very happy and they are sitting comfortably again at their new computers.

Helen Childs

https://www.lasag.org.uk/ 

https://www.mavisnyefoundation.com/ 

A Diary Of A #Mesowarrior Living With #Mesothelioma #asbestos –Today is #Mesothelioma Awareness Day

I have had my scan so waiting for the result next week to know if they have any treatment for me –a nail biting time

Today is a special day for Mesothelioma as it is the Awareness Day for 2020.

We need to keep Mesothelioma in the news as so many are working in conditions where asbestos is a danger. Yes even in 2020 it is still with us in Schools, Houses built before 2002 and building like the House of Commons, museums, prisons etc the list is so long.

We must manage asbestos and we must train people in how to remove it safely.

The reason we need to keep raising more awareness for mesothelioma is because the deaths from mesothelioma and other asbestos-related diseases are almost entirely preventable. Asbestos exposure is nearly the sole cause of these diseases so a world wide ban is needed. Im always shocked that the US have not banned asbestos and yet they are paying out so much compensation.

There is no cure for Mesothelioma even though there are drugs coming through that are treating the disease better than Chemo we need far more research into the disease

There were many misconceptions about the disease. That’s why several organizations are working hard to raise public awareness about mesothelioma and asbestos exposure. These organizations raise money to fund medical research and advocate for a complete ban on asbestos.

Each year, asbestos-related diseases kill more than 100,000 workers worldwide. An estimated 2,500 to 3,000 people in the UK die each year from mesothelioma. But the figure rises to 5000 if you add all the lung and other disease’s causes

This has to stop we have to make our world safe for the future

Sep 22nd, 2020

Ian has raised a problem I raised in the House Of Commons at the Asbestos Working Party meeting as Im one of the patients caught up in this injustice. The gap between being able to claim compensation in the courts and not (Im a secondary claimer and they didn’t recognise that this could happen when washing clothes until 1964)  So I cant claim for private treatment when there are no trials.————–

Diffuse Mesothelioma Payment Scheme (DMPS)

Writing this in the midst of the Coronavirus pandemic, it feels like the lockdown status will never end. Most of us will have friends and family working within the NHS who are selflessly supporting sick people and devoting all of their energies to caring for those most in need and helping to steer the country to a much better place.

It seems hard therefore to focus on an injustice for mesothelioma patients which existed before the current medical emergency and will continue as we emerge from the crisis. However, this injustice must now be addressed urgently to support the needs of mesothelioma victims in the future.

Introduced in July 2012, the Diffuse Mesothelioma Payment Scheme (DMPS) was designed to provide one off lump sum awards for victims of mesothelioma comparable to civil awards. The Scheme, which was brought in to force by later legislation in 2014, helped to fill an appalling vacuum which had existed for many years whereby individuals who had been the victims of negligent exposure to asbestos dust by dissolved employers and had gone on to develop mesothelioma, were unable to obtain compensation if insurance cover (the old policy document) for the dissolved employer could not be traced. Often, this was because insurers had – on their own admission – failed to keep comprehensive records or those records had been lost or destroyed. Many of these missing records related to companies insured after 1972 when all employers were legally obliged to hold insurance cover against the risk of employees sustaining personal injury at work pursuant to the Employers’ Liability (Compulsory Insurance) Act 1969.

Forcing the insurance industry to right this wrong, the Association of British Insurers (ABI) agreed to the introduction of the Scheme from July 2012 with a levy on insurers each year of a maximum of 3% of employers’ liability insurance premiums. This was projected to provide £300m over a period of 10 years. Those diagnosed before 25 July 2012 were unable to benefit from the Scheme which began to take applications in July 2014.

In its report of the financial year to April 2018, the Department for Work & Pensions advised that the average award to sufferers was £145,000. The equivalent sum to April 2019 was £148,000 which has allowed the Scheme administrators to operate with a significant surplus.

These awards for victims now fall some way short of compensation levels through the courts. Additionally, since the introduction of the Scheme, my experience as a specialist asbestos practitioner is that a 2-tier system has emerged which the Scheme was designed to remedy. There are those who receive the fixed non-negotiable tariff under the Scheme, and those who are able to trace insurers and are therefore able to access funds for immunotherapy and other treatments not available on the NHS. The difference is therefore whether an historic policy of insurance has been traced by the insurance industry or not.

It has become increasingly apparent that treatments for mesothelioma which are not currently available on the NHS can be effective in controlling disease progression. Though clinical trials at many specialist centres are ongoing, from experience with my own clients, I can say that treatments have been successful in prolonging the lives of some clients and a small number have exceeded all expectations.

The problem is of course that whilst those with viable claims against insurers are able, for example, to claim loss of earnings in addition to the costs of treatment, those whose only remedy is via the DMPS cannot. With treatment costs on occasions exceeding £10,000 every 3 weeks, an average DMPS payment is likely to provide treatment for less than a year, leaving nothing for the family to compensate for other areas of financial loss.

Many will not be able to benefit from these new and evolving treatments because their disease has progressed too far, the patient declines treatment, opts to participate in a clinical trial or other unrelated conditions make any form of treatment unadvisable. However, for those who were negligently exposed to asbestos by their employers, the determining factor must be whether these treatments are recommended by the treating oncologist.

The Scheme can and must be amended to catch up with medical developments and expectations of patients and their families. In turn, the Scheme administrators can be satisfied that payments need be paid only to patients who receive treatment. It’s time for the DMPS to end the 2-tier system for victims.

Written by Ian Bailey. London asbestos law partner at national firm Irwin Mitchell

Rays Video seems to be very fitting for today as he tells the story of Asbestos in the Dockyard

 

 

 

 

 

ramos72.wixsite.com/mnf-news-page The Mavis Nye Foundation News Letter

A Diary of a Mesowarrior Living with #mesothelioma #asbestos I have reached a brick wall can I smash it? Yes I can !!!

 

 

 

 

 

 

 

I feel as if I have come to a brick wall. Its the first time in 11.5 years I have felt like this.

My scan has shown I have still growth even if it is slow My Nasty is growing and laughing at me.

I have had a pone call from the Marsden that Im not suitable for the 2 new trials coming through. Why? I don’t know as yet but I will ask when I go for another scan next week if they get the letter to me.

I sat down sat down and everything was going round and round in my head. This has been a hard year of separation from all my dear friends and family. Its ok doing Zoom but your not touching. Last night we had a Zoom meeting with 2 dear friends that I think the world of but they couldn’t see nor feel me stroking their cheek and the feeling of wanting to cuddle them was very strong .Its one of those times when you just want to hug and say it will be OK.

So I have taken everything back into my own hands. Im back in charge again searching for trials and treatments just like 20014.

I contacted Liz Darlinson of Meso UK a support group that has become my crutch Im very involved in raising awareness with them.

Liz asked if I have gone down the natural route and gave me a great link  that I have to read through and see what I can change http://www.cancernet.co.uk/lifestyle.htm?fbclid=IwAR0WmX5LbMOsGgCTiJElTc39Mo5Aim1azt58jKPIpvSyrWmfxTiNP9pAdRA

So that step one

Step two is A Clinic which I have contacted to see if they have any trials as The Marsden Sutton and Chelsea are going out of the frame Leicester as well. Barts is my next call after the scan results but I do feel like that brick wall is very tall now.

Where would we be without Support Groups. Since I have been in Zoom meets I realise the huge part they play. MESSY has been my Favourite with Simon Bolton who really runs a friendly crowd people that are very clued up on the subject. I think that’s because Simon is very clued up and so interesting but also because he allows mw to natter away and put my two pennyworth in but also because he is way up in Leeds where I could never travel each month by train, well not at the moment.

So that’s where Iam today in this Covid 19 world. Please don’t go into another lock down my nerves and my Meso cant take it.

I have been gardening where I can lose myself amongst the weeds and cut down all the tall growth. Planted bulbs in pots. I will be here to see them pop up in the spring Positive rules the day.

 

 

 

 

 

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –Another Birthday has been reached and new glasses have been ordered,

I have been quiet since my last blog as I have to come to terms with the fact I wasn’t going on the Bayer trial and my eyes are damaged.

We immediately made an appointment for the Optician’s which we had to do on line and there were few appointments offered which meant I had to wait until yesterday to be sorted.

I have had a Birthday on the 27th Aug which was another zoom success and social media with almost £2000 donated to the charity which is brilliant and I thank everyone who was so generous. We will be able to do so much good with that and we have a meeting next week so we can make plans for the foundations work in 2021.

We have managed to get out and the world is so different.

 

 

 

 

 

 

 

 

Empty beaches where it would normally be so packed, but we did meet people walking their dogs or taking a stroll to get sea air in their lungs.

It was nice to sit and watch the sea from our favourite spot.

 

 

 

 

 

 

 

A neighbour got himself stuck in a hole much to our amusement he had come round the corner and drop into a hole and got beached on the wall.

He just left it and went indoors.

 

 

 

 

 

 

 

 

I think a neighbour had more than sea air in his body.

Ray had bought a birthday cake and hidden it in the shed overnight which surprised me as he had lit 4 big candles as well.

 

 

 

 

 

 

 

 

 

Family visited on Sunday so all in all it was a good birthday.

Then yesterday we parked in the park and ride, which had just opened again since March, and so was able to catch the bus into the city.

There wasn’t many people as the tourists from abroad were missing but lots of students from the Uni were enjoying the warm day. Some wearing face coverings and many not.

I had to shop in Boots the Chemist and we couldn’t find the entrance. The main one was all shut up so we came down the side and went in a door but that lead to the roof car park. Just a bit further on we found a door and was able to purchase things I wanted.

We sat on a bench in the fresh air until it was time to go into the Opticians.

We could choose frames but when we took them off they had to go into a little basket where the frames were then sanitised.

The Optician was very thorough and agreed with my Doctor I had very dry eyes and a damaged cornea, he was able to sell me good lubricant as he said the ones I was using had preservatives in so could do more damage.

I have chosen my new frames and paid a fortune for the new lenses and he recommends to wear sun glasses most of the time so I have bought wrap around ones that will go over my new glasses.

Ray then had his test and chose his glasses so it was a dear old day yesterday.

A phone call from my Doctor to say they cant find a trial for me yet as I have had so much treatment I don’t fit criteria’s. Dean Fennel has been contacted and he hasn’t anything for me, so my Doctor said can I wait until next week to let him keep searching. I don’t have a choice really do I.

I will do my own research again but will wait until next week.

So relaxing and enjoying the freedom from treatment and not panicking is the order of the day,

https://www.mavisnyefoundation.com/my-donate-page.html

Help me to leave a legacy Thank you

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — I havent passed for the New Trial Boo Hoo!! so What next.

 

 

 

 

 

 

 

Woke up to a windy day yesterday but we arrived on time at the Royal Marsden where I was booked in for a long day of tests for passing me to the Bayer Trial. I thought it would be easy–Wrong.

I had my bloods taken and put into so many little tube.

I had to do a Covid 19 swab and a swab for anal virus, that is a new one as there is a virus that lives in your gut.

Then I saw the Doctor who went through my health and and past treatments. The taxi was coming to take me to Parkside Hospital Wimbledon Common for an eye test.

Ray was allowed to travel with me and wearing our masks we enjoyed the drive in a part of London we haven’t been in before.

Ray couldn’t come into the hospital so he found a bench to sit in the sun to wait for me.

I just had to sanitise my hands and wait in the waiting room.

The Doctor came out to meet me and showed me into his clinic where he told me it as exactly a year to the day when he had examined my dry eyes while I was on Keytruda.

He put the drops in and I sat outside for half an hour then went back in where the light was put on my eyes and he could examine all the eye,

He said my eyes were as dry as the dessert and to my spray more times in a day. That’s all he said and i was allowed to go back to the RM.

Ray went back to the car and I came into the hospital where I went back to Oak ward.

I was weighed and vital signs checked and then waited to go to St Anthonys Cheam for Ehocardardiogram.

Ray came again and he sat out on a bench where he fell asleep and a nurse was worried about him, Ray said he thinks she thought he had died as she quietly asked if he was Ok. It even rained so he stood in the bike shed. poor Ray his day was different to mine.

I had to follow the red markings (no not the yellow brick road, The red one.

This took me around to the back of the hospital where I had to ring the door bell.

I was let in and then a really nice friendly man took my temperature with a huge box that I was standing by. I had to remove my mask and he gave me a new one.

The Clinic wasn’t ready for me so I was sat in Isolation in a room as I had come from the RM a Cancer hospital.

He chatted away with me so I didn’t feel lonely.

Thetechnician (sonographer) came and escorted me to her room where she spreads gel on a device (transducer). The sonographer presses the transducer firmly against your skin, aiming an ultrasound beam through your chest to your heart. The transducer records the sound wave echoes from your heart. to send back to the RM

She said when she looked at my name “No Way” as I was surviving so long with Mesothelioma. My Heart is so very strong so just keep on doing what you are doing.

I could go back to the RM so I followed the red markings back to find Ray and we got back in the taxi to the RM

I went back to Oak ward where I was then seen by the Doctor. I had passed everything with flying colours and I said could I have something more for my eyes.

He hadn’t seen the results to say my eyes were dry as the desert,

He phoned the Doctor I has seen there ad he said yes they are dry and this has damaged my Cornea. My Doctor said that is going to bar me from the trial as the drug that they use, radioactive thorum 227 can damage the eye so they have to be healthy.

He is going to hold a meeting Monday to clarify that but he said Im so sorry you wont be able to go on the trial.

My heart sank and I crumbled but me being me I put a smile on my face and said don’t worry we will find something else.

I went back to have my port unloaded and the nurses are as devastated as I was.

So that was it I came out found Ray and told him. We came home and bought fish and chips and a nice hot chocolate to consul ourselves.

Life get tedious doesn’t it . Lets see what Monday brings in the mean time I have to get new glass as the damage has hurt my eyesight. More tests!!!

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos — All signed up for the BAY 2287411/18795 Dose Escalation

 

 

 

 

 

 

 

Yesterday the M25 flooded just at J7-J8 just where we turn off to go to Sutton so I pushed Ray this morning to get out early for my 10.30am appointment, Guess what we had a lovely ride through and got there 9.30. Oh well I went in and Ray settled in the car with the instructions that what ever I wanted to do with this new trial just do it and he will agree and work with me. That made me feel so much better but I was wishing he could get in with me.

With my face cover on I arrived at the main door where my temperature was taken.

I put my Covid-19 test into a basket that was on the counter, and was able to go straight in for a blood test then a ECG which took me round to 10.30 anyway.

I was called to the Research and Development Clinic an waited. You feel in another world as you sit in chairs that are spaced out so no one touches.

Soon I was called and shown to a room where my Doctor explained all the trial to me and I signed so many papers for BAY 2287411/18795 Dose Escalation a Thoruium 227 Labelled Antibody -Chelator Conjugate in Patients with tumours know to Express Mesothelin Bayer is a German Drug Company.

I start Sept 1st and stay over night as I will be radioactive. Ray will stay in a Hotel for a night and pick me up the next day.

Its only every 6 weeks so that sounds doable.

I cant wait for things to get back to normal. I smile at people but get a stare back or are they smiling as well, its hard to see.

So that it I’m all signed up and hope I don’t get the bad side effects that can happen. Apparently it can hit the marrowbone so that’s why I will have to go every week for a blood test just to make sure as if the blood does drop you need a blood transfusion and it might take ages for the blood to recover, but they do keep a strict eye on it.

I was glad to get to Ray in the car and travel home although they had closed the road and we had to do a detour. I grabbed the Sat/Nav and set it up fast. I hate it when a journey is strange and new to me.

We soon got home and have rested its been a long day.

https://www.mavisnyefoundation.com/my-donate-page.html

 

 

 

A Diary of a Mesowarrior Living With #Mesothelioma #asbestos- A new trial to be signed for Friday and the crazy world of shopping –now I can shop.

 

 

 

 

 

 

 

Its been hot hot hot. Wonderful weather.

I was so very down last week. I have to get head around all what is going on. Locked up all year and still cant really go out like last year.

But I have pulled myself together and I will accept the Trial at the Marsden I have made my my mind up. My son has phoned today a he wants to know what I have decided’ I told him I have to fight on there is a battle to won again and he is now happy that I have decided and is encouraging me –I love that boy of mine xx

So Friday I will sign up Im just reading all through the paperwork that they have sent me.. I have been told that the side effects are a reaction as the drug goes in but if that happens they will give me drugs that will help and also your bloods can drop and you need a blood transfusion but that is rare. They monitor your bloods every week but you only have a Drug day once every 6 weeks. You have to have a Bi-op first to see if you fit the criteria The trial is for 20 patients The dose of Thorium-227 will start at 1.5 MBq and increase in steps of 1.0 or 1.5 MBq, with antibody doses of 10 mg.the anti body will target the tumour https://clinicaltrials.gov/ct2/show/NCT03507452

First-in-human Study of BAY2287411 Injection, a Thorium-227 Labeled Antibody-chelator Conjugate, in Patients With Tumors Known to Express Mesothelin

So I enjoyed the weekend and worked in the garden this always takes my mind off of my problems-

At last Mesothelioma has had a drug passed by Nice. While Covid 19 has spoilt things they have allowed. Not for me as I have had Immunotherapy but Im so happy for all the Mesowarriors in NHS England
Monday I was in a Zoom meeting in The West Midlands Support Group with Sophie Philips. That was really a great time and a lovely group. We went overtime as we were having fun.
I love this way of talking to people as we would have had to have got up very early and paid a fortune on train fares or stayed in a hotel. It really is the good thing that has come out of this strange year.
A very interesting Artical I wish to high light we need to know we are keeping safe from this virus

We know that by wearing masks, we can help reduce the transmission of COVID-19, and we know that not every type of face mask is equally good at blocking viral droplets when we cough, sneeze, talk – or even simply breathe. But how can we really know for sure?

We had to go to Curries yesterday to buy a new telly and as we can go in shops now I thought we would give it a try.
We joined a queue making sure we were standing on a mark and put our masks on,
We had to wait for people to come out that created room for us. We went around the one way system and chose our TV, The assistant came up and we paid with our card and had to arrange delivery for today. This is the new norm but I said what about winter as I dont fancy standing outside on a wet cold day.
He was that they will have more staff by then as there is only 6 on now.
Came out and other people had torn their masks off and threw them on the ground. There is a waste bin there –Why are people so lazy ??

A Diary Of A #Mesowarrior living with #Mesothelioma #Asbestos — Today The Foundations Name Flies High in a Spitfire

Gosh it has been so hot yesterday but it is great to be having a summer.

Well today is Aug 1st and we are out of lock down hooray !! but now the figures are going back up, or so they say, so I will still stay  away from towns and walk in the country.

It has been so great Zooming with everyone and being included in so many meetings I did 4 on Wednesday  I would never have travelled to so many so this zooming is great,

Today a Spitfire is flying over all the NHS Hospitals and Royds Withy King have given me a surprise of donating and putting my name in the plane. That was a wonderful surprise but they are always doing wonderful things to make me smile.

I have made so many friends on my journey. RWK have supported me throughout making large donations to the Mavis Nye Foundation which I cant thank them enough but there is always a parcel on my doorstep be it flowers or wine etc to cheer me up on my bad days and they have really raised my spirits this time as my trial has been taken away from me and there is this gap before finding another one. I needed cheering bless Helen Childs and her team

https://www.express.co.uk/news/uk/1317199/NHS-spitfire-route-map-where-NHS-spitfire-fly-weekend-flypast-how-to-watch?fbclid=IwAR2zqknCSaLu2y4CNZZPCC_88yvFraUJ4mlG6Yc3YE0RVzla38gQRA4zmrc

Here is the the NHS Spitfire Route for Sat 1st August 2020

1. 11.00am – Duxford Airfield (Take-off)

2. 11.15am – Southend University Hospital NHS

3. 11.20am – Medway Maritime Hospital NHS

4. 11.27am – Kent and Canterbury Hospital NHS

5. 11.32am – Queen Elizabeth The Queen Mother Hospital NHS – Margate

6. 11.37am – Buckland Hospital NHS – Dover

7. 11.42am – Royal Victoria Hospital NHS – Folkestone

8. 11.46am – William Harvey Ashford Hospital NHS

9. 11.55am – Conquest Hospital NHS – Hastings

10. 12.00pm – Bexhill Hospital NHS

11. 12.05pm – Eastbourne District General Hospital NHS

12. 12.10pm – Brighton General & Royal Sussex County Hospital NHS

13. 12.18pm – Worthing Hospital NHS

14. 12.25pm – Bognor Regis War Memorial Hospital NHS

15. 12.29pm – St Richard’s Hospital NHS – Chichester

16. 12.30pm – Goodwood Aerodrome (Land)

Short Break

1. 3.00pm – Goodwood Aerodrome (Take-off)

2. 3.05pm – Queen Alexandra Hospital NHS – Portsmouth

3. 3.10pm – St Mary’s Hospital NHS – Newport, Isle of Wight

4. 3.20pm – Poole Hospital NHS

5. 3.25pm – Royal Bournemouth and Christchurch Hospitals NHS

6. 3.32pm – University Hospital Southampton NHS

7. 3.47pm – Salisbury District Hospital NHS

8. 3.55pm – Royal Hampshire County Hospital NHS – Winchester

9. 4.00pm – Basingstoke and North Hampshire Hospital NHS

10. 4.05pm – Frimley Park Hospital NHS

11. 4.10pm – Royal Berkshire Hospital NHS – Reading

12. 4.18pm – Amersham Hospital NHS

13. 4.26pm – Oxford University Hospitals NHS

14. 4.30pm – Watford General Hospital NHS

15. 4.40pm – Duxford Airfield (Land)

 

 

 

 

 

 

The Foundation has had a lot of publicity as we have set aside 2 years of funding a Mesothelioma UK Nurse and the icing on the cake was Toni Fleming accepting the post. She is my Clinical Nurse at Kent and Canterbury and has been with me since my diagnosis 2009.

TONI Fleming has been appointed as a new Mesothelioma UK Clinical Nurse Specialist for East Kent Hospitals University NHS Foundation Trust. She will be based at Kent and Canterbury Hospital and will be supporting mesothelioma patients across the East Kent region with their treatment and care.

Mesothelioma is a cancer related to exposure to asbestos and predominantly affects the lining of the lungs. The UK has the highest incidence of the disease in the world with around 2,700 people diagnosed each year.

Toni will be working alongside Mesothelioma UK Clinical Nurse Specialist, Louise Gilham in Kent. The new role will be fully-funded by the Mavis Nye Foundation for the first two years. The Mavis Nye Foundation was set up three years ago by Mavis Nye, the longest-living mesothelioma patient in the UK and a patient advocate for Mesothelioma UK.

Toni Fleming has been a Lung Cancer Nurse Specialist since 2004 and a General Nurse since 1995. She has worked in lung cancer and palliative care throughout her career.

Commenting on her new role, Toni said:

“East Kent has a particularly high proportion of mesothelioma patients so I’m delighted to be working with Louise and the wider Mesothelioma UK team to support our patient community. I’ve been working with Mavis since her initial diagnosis and the support of her Foundation and donors has been critical in establishing this new role.”

New asbestos-related cancer nurse specialist appointed for East Kent

Then I played a part in Cancer 52 Film which has been a great success and I hope patients will not be scared to go to hospitals. They are making sure we keep safe. I have been tested for Covid-19 on every visit to the Royal Marsden

 

 

 

Today starts IOSH campaign for Occupational Cancers so I get involve as i always have done.

https://www.notimetolose.org.uk/world-lung-cancer-day-2020/ Working together to beat occupational cancer
We know that joint action is needed to avoid the future human toll and the premature and unnecessary loss of skilled and experienced people from our workforce due to work-related cancers. IOSH welcomes your support and commitment to take action. Here’s how you can help.
Image may contain: text that says 'NO TIME TO-LOSE iosh Raise awareness of how to prevent work-related lung cancer on #WorldLungCancerDay 01 August 2020'

So its been a busy Month with many ups and downs.

Please keep safe

https://www.mavisnyefoundation.com/my-donate-page.html