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

A Diary Of a Mesowarrior Living With #Mesothelioma #Asbestos –My Bi-Op for Mesothelioma Research

https://www.royalmarsden.nhs.uk/your-care/diagnosis/ultrasound

So today was the day for a biopsy for research on my  Mr Nasty. I saw him again sitting there like a black rock next to my heart and right near a rib.

An ultrasound scan does not hurt. You only feel gentle pressure of the sensor over your skin. If you are to have an internal scan any sensations you may feel will be explained to you.

Your scan will be carried out by a sonographer, a specialist radiographer, or you may also see a specialist doctor called a radiologist. When you arrive in the department you may be asked to undress and change into a hospital gown. You will then be asked to lie on an examination couch. The lights in the room will be dimmed so that the pictures on the monitor can be seen more clearly.

A gel will be applied to your skin in the area to be scanned, such as the abdomen. The gel allows the sound waves to pass into the body and the transducer to move over the skin more easily. The gel will be wiped off at the end of the scan.

We travelled the M2 M20 M26 and M25 fairly smoothly and arrived at 8.30. I had to leave Ray in the car put my mask on and sanitize my hands.

I was welcomed by the Receptionist and shown to the day ward and my bed for the day.

All my vital signs were done by a really nice male nurse. He was so sweet with a very modern haircut.

I kept phoning Ray to tell him where I was at in the day just to keep him informed.

The doctor visited me and signed off my notes for me to have the Bi-Op.

I was on the list and had to wait to get to the top of the list and just as my lunch was being served of coarse the porter came to take me in my bed to the Scanner Dept.

Off I went through the corridors and in the lift to floor 1 with another push through the corridors. Joking all the way.

I was left outside of the room in the sunshine that was beaming through window onto me.

The radiologist came along and it was the same one that has done all my bi-ops so I knew I was in good hands.

I watched it all on the screen. That first injection to numb the are did hurt as it went in. Apparently it was so near my rib it was hitting the cartilage, Oh!!

Then the next on went in a little deeper until I could feel it and that was repeated 3 times. It all became easier to bear then.

In she went warning me I will hear the clip sound as she took a bit of Mr Nasty, this was repeated 4 times, then it was all finished.

The radiologist then said that the growth was very slow and the tumours are very small so I have plenty of time for my team to find me a trial. They will contact me with a plan soon.

I said what about the invasion of my spine. She told me that what had happened was Mr Nasty had spread along a nerve that runs from my lung to my spine. She told me dont put up with the pain ask for Radiotherapy, I promised I would.

In the mean time take a paracetamol and a co-codamol to make sure I get a good nights sleep.

So I returned back to the ward and had to have 2 hours bed rest. My blood was taken again and my lunch was bought to me. Gosh the portions were huge and i wished Ray was with me to share it.

I was soon saying goodbye to everyone, collected my prescription and got to Ray who had been on his own for 7 hours !! He was telling about all the people that were in the car park and all the antics they had got up to.

We were so pleased to get home again. So that was my adventure today now I have to wait for letter and just what they plan for me. Until then I wait for Aug 1st and my escape from Covid 19 release.

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

 

The Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — Mr Nasty is winning again so off the Hyper Trial

 

 

 

 

 

 

 

Have you ever had a day where you need a cuddle. Well today is my day.

I have fought this disease for 11 years and given it my best shot.

The dam virus that is out there has beaten me as it stopped my treatment and allowed Mr Nasty to grow back and onto my spine.

This morning a Doctor phones me and says Im booked in for a scan Monday ? MMM No said I. I will have to check hang on.

My Own Doctor phones and said he is so sorry he didnt want to tell me over the phone. I assured him he could tell me anything and braced myself as I knew then it wasnt going to be good news.

I asked has it grown on and he said it had and they want to take me off the Hyper Trial. They are talking and trying to find me another trial. There are some coming in 2 months so he thinks I have time to wait.

So the plane is on Monday to go and have bloods taken to finish off the Trial and the a Bi-Op on Wednesday. he wanted me to understand this wasnt for my benefit but for research to see how my tumours look like under the microscope after the trial drug.

I said I know but I have always said my body is yours for research and living bi-ops are better for information.

I came off the phone and told Ray and said just let me take all this in and slot it into my mind. Then I went in the bedroom and threw away all my large clothes, mainly trousers. I know I have been losing weight again even though I have been eating well. The pains in my back have been getting worse and my voice is funny again. There were signs but I closed my mind to them.

So Im having a good weekend and we will see what Monday brings and what the plans are for the next round. The gloves are on again.

 

 

 

 

 

 

 

 

I will throw myself into fund Raising for the Foundation There are plans and I want to see them come into being, its even more urgent now.

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

 

A Diary of a Mesowarrior Living With #Mesothelioma #asbestos –Action Mesothelioma Day and The Launch of Cancer 52 Film.

My next stop was Zoom for the June Hancock meet

 

I have left writing for to long and now there is a long story to tell.

Last Friday was Action Mesothelioma Day which every year we usually travel too. This year isn’t normal so it had to take place on social media only. We all were a little hesitant at this but in the end it worked out really well. I was able to visit three groups. I would never have done this if I had to travel.

First it was Mesothelioma Alliance 2020 who kicked off the day. i belong to this group and was involved in the meetings which was really interesting to help bring such a big event togather. Zoom meetings have played a huge part this year. I also had pre recorded a speech for the event with my Mesobuddy Paul Cook of Erase Meso. we have really come together to work.

I then joined LASAG and their meeting

 

My next stop was Zoom for the June Hancock meet which was very interesting especial Adrian Dobbs who gave a fascinating insight to Mesothelioma research.

After the weekend Monday was a Zoom meeting with Mesothelioma Uk and the a Zoom meeting with Paul Cook to discus AMD 2021 there is no let up straight into planning a bigger and better day for next year.

Then A zoom meeting with Cancer 52 as a fim I had taken part in was going to be Launched on Thursday.

Ray had video me for 2 days here at home with the director on the phone making sure I told my story of my experience of visiting hospital for treatment. So many patients are not attending for fear of the Coronavirus

Cancer care was disrupted during the initial days of the Covid-19 pandemic but now services are up and running. But cancer patients are worried about attending. So Cancer52 has created a video Cancer patients talk about their care to encourage patients to attend treatments.

The video has been made with the help of Cancer52 member charities who have put forward patients who have had treatment during the pandemic.

.https://vimeo.com/436380998?ref=fb-share&fbclid=IwAR1VJD4fbtd8IJ6F5Y6Cm-ywSVa82znhjwPTAP07GUJfg0C8a7Vx4ac544o 

 

 

 

 

Click on the link

So it has been a very interesting time and Monday is scan day at the Marsden and Im so nervous. I hope the treatment has kicked in and that there isn’t anymore growth.

We have been decorating so as to keep our minds from thinking to much.

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — My Covid 19 Test at The Royal Marsden

 

 

 

 

 

 

 

 

Yesterday was a crazy ride to the Royal Marsden.

Treatment day was upon us again but the traffic is back to normal. Got to the M26 and that was it everyone was stopped.

We waited and waited and after an hour we actually started moving, very slowly inch by inch we got to the M25 and joined the traffic as we slowly inched along.

Then when we got to Clackets Lane Services we at last got going and arrived at the Hospital at 10am.

My bloods were taken and I did my Covid 19 test I saw the Doctor, who was pleased with me and waited for blood results.

When they came through at 2pm I rushed out to Ray who had been waiting all that time .He had been kept amused by a driver who messed about so much he backed into a wall and drove off after banging into a mans door. Ray said it was like comedy film being played he couldn’t believe what he has seen.

 

 

 

 

 

 

We had to get to the Tyre garage as we had ordered a new tyre as we had a very slow puncture. We were so nervous driving and we had to get there by 4pm.

We made it and the tyre was soon changed. The owner was saying that business is so bad he really doesn’t know what the future holds.

Home at last we had Dinner

This morning up and out it was so different.

Straight to the hospital I went in at 8-15, mask on, hands sanitized and up to the ward.

ECG done, drug infused the other drug injected and I was all done by 10.15am That was really good going.

Rules have been changed with the Covid-19 testing.

I have been given a kit to take a sample on the Monday before my next treatment day.

 

 

 

 

 

 

 

I have to swab the back of my throat by the tonsils, Well I haven’t got any so I guess, Then I put into the container, put that into another holder and right the date on it.

Pop these into a paid envelope.

I then enter my postcode on line https://www.royalmail.com/services-near-you#/

This shows me what boxes are near me.

At least I feel safe going to hospital now they are really doing all they can to keep the virus out of the hospital.

 

 

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

https://www.mavisnyefoundation.com/

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — We Have Our Diamond Wedding Card From The Queen

A very exciting post today.

 

 

 

 

 

 

 

 

 

Our Diamond Anniversary cad from the Queen

I love it as I wont get to 100 so this is just great.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thank You your Majesty it was lovely

Its been a busy day today with Zoom. I have sorted all the problems loading it on the new computer. I have had to load another program to solve the problem I now have UBUNTU which solves the 1132 problem that so many people get.

I got on Ok in a meeting with the Meso UK Advisory Board. It was lovely to meet up again Then tonight I watched a Webinair in the US it wa all about Immunotherapy and the Immune System very interesting.

Tomorrow Im in Yorkshire with Messy a Asbestos Support Group.

I have just seen a Twitter —

MESSY
@MesoYorkshire
Really looking forward to welcoming

to

tomorrow afternoon. I’ll be updating you all on all things #ActionMesotheliomaDay whilst Mavis shares her story as her fight goes on throughout the COVID pandemic Simon

It shows you how I can speak at so many venues without travelling. Love it

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

 

A Diary Of a #Mesowarrior Living With #Mesothelioma #asbestos A catch up

It has been a funny time since our Anniversary.

5 days last week of travelling to the Royal Marsden really tired us out but we did get through it sane.

I found wearing the face mask uncomfortable the first day rushing through the corridors to the ward and then rushing out again 3 hours later, so worried about Ray having waited all that time in the car park, and not being able to come in even for the loo. I came over all weird like I did with sepsis. I made it to the door and got into the fresh air. I felt better. Talking about this on Facebook that night a doctor said we have to be so careful with a bad lung that we are breathing in our own Co2. The rest of the week I kept it off the nose and so I was able to breath freely.

Each day we returned home to find our painters had managed to get some more painting done in between the showers so we have a smart fresh home again

The week went quickly and it was soon Friday. I had kept all my appointments for meetings that were in my diary so felt good but Saturday was the icing on the cake. My Son and DIL came to see us in my bubble.

Fish and chips in the garden for dinner was brill. We couldn’t cuddle but it was a great day and it boosted our mood to a high. It had been lovely to see them after all this time.

Sunday was a back to reality day but happy.

This week has been busy with Cyber meetings but all on laptop as my computer had got a critical system. It just went black and we couldn’t retrieve it so Ray ordered a new computer but it went all around the country as we tracked it. Today the bell went and I have a new computer. Ray has to play though and so I had to try it out but I got to the LASAG meeting with no mike, I tried to sort it and after the meeting I finally found a little sign of a muted microphone to my computer not in Zoom so hey ho! I have sound.

Diary Of A #Mesowarrior Living with #Mesothelioma #Asbestos — We Celebrated our Diamond Wedding In Lock DownAnniversary

 

 

 

 

 

A day that was a target that we never thought I would be around for. I have beaten all the odds to be able to celebrate our 60th Wedding Anniversary.

But we made it and although we have had to cancel the event we had planned in London to have a huge party we turned on the computer and stayed on there all day. So many good wishes and so many Zoom meet ups with family and friends was making this a total different celebration.

We felt very modern as zoom was never heard of but because of lock down it has become a way of life and I can see it is the way forward.

We didnt get our card from the Queen as the Buck House Office is closed because of Coronavirus which was a disappointment but Fred Dineage sent a message on Meridian News so that made up for it.  Fred congratulating us at 23.05 https://www.facebook.com/itvnewsmeridian/videos/770221123720310/

 

 

 

 

 

So 60 years since we married. I was 18 and Ray 22 and he had just escaped the army as he had completed 2 years national service.

 

 

 

 

 

 

 

 

The doorbell kept ringing and flowers were delivered and filled the house up with a summer fragrance.

Royds Withy King set up a Zoom party for 4.30 that was so lovely as I didnt realise that there would be so many on there so all in in we have had a wonderful special day Thank you to all those that have shared it with us. And a huge thank you to all those that have donated to the Mavis Nye Foundation Mesothelioma Research is my passion.

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

Ray had put together photos of the day 4th June 1960

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –Our first legal walk since Feb 14th what a year this has been

 

 

 

 

 

 

 

Today was freedom day if only for an hour.

The rules for us shielding at home has been changed to 1 hour walking outside.

We have been so good so we got up and completed the housework then drove around to our Victory Park

We always did this trip with our beloved dog and he loved running off lead but sadly we have lost our little hero.

The car park was full but people park here to walk the 14 miles into Canterbury as there is a lovely walk that uses the Crab and Winkle line.

But we walked around the out line of the Victory Ship that they have marked out

Crab and Winkle Way – Canterbury to Whitstable

https://www.woodlandtrust.org.uk/visiting-woods/woods/victory-wood/ 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So you can see miles and miles of countryside so near the sea. The sun warm and clear blue skies. Just perfect for a walk. We did meet a Mum and Grandma with a little girl and saw walkers with dogs but we were really able to keep our legal distant.

Victory Wood is a 140-hectare (350-acre) site on the western edge of one of the largest areas of continuous ancient woodland in South East England. Known as the Blean complex, it arches over the north of Canterbury and covers an area of 28.5 square kilometres (11 square miles).

The site is centred between the villages of Dargate and Yorkletts, some 7.8km (3 miles) north of Canterbury, and lies in the North Kent Plain Natural Area to the north of the North Downs Area of Outstanding Natural Beauty and south of the Thames Estuary.

We both are looking forward to tomorrows walk now.

 

A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos — A week of treatment

 

 

 

 

 

 

 

 

 

Its been a week of travelling 5 days to the Royal Marsden.

The roads got busier and busier through that time but with the schools still closed it meant the journey was done each day in 1hr.30mins

Must say there have been some bad drivers that have had the roads to themselves for so long that speed and concentration was not so good.

We arrived in the car park that still has the barrier up so parking was free but Ray had to stay with the car as not allowed in even to the loos.

The man at the desk got to know me and where I was going so with a squirt of sanitiser on my hands I went straight to Oak ward.

I was the only patient each day which was very strange. They have opened the treatments for us patients that are getting a bad result. All treatment will open June the 1st so they will be busier then.

Blood results were quick on Monday and saw the Doctor who told me I was 17% growth so was still classed as stable it was the fact there was new  growth on my spine lining that they decided to get treatment on the go again.

She said I was free to go so we were soon back on the road.

Tuesday straight in and had ECG and the drug was ready  and I had my injection all done before 12 midday. Thats a record.

Wednesday, Thursday, Friday all just in injection and home. The car hadn’t even cooled down.

Im free now until the 8th of June.

Im locked in again incase my bloods go down making my Immune system weak and with the virus still out there I have to stay home but we have the write up that a Mesowarrior has survived the Coronavirus which is very interesting news.

David Long is 69 and lives in Southampton. In July 2018 he was diagnosed with mesothelioma. He recently tested positive for coronavirus and wanted to share his experience…

Following his mesothelioma diagnosis, David took part in a clinical trial which went well for around 10 months until David experienced a severe reaction to it and had to come off it.

David then tried privately funded immunotherapy in November 2019 which worked to stabilize the cancer but not reduce it. In January 2020 David tried a different type of chemotherapy but again, had to stop due to a bad reaction to it.

David was on no treatment, just pain relief, when, in mid-March he began to feel unwell with high blood pressure and a cough.
He went to hospital and was tested for coronavirus but was told it was negative. Three days later he still felt unwell and went back to hospital. This time, the coronavirus test came back positive.

David and his wife Jo were shocked and frightened by this news. His consultant had already warned them that if David was to get coronavirus, it would be very serious for him and so they had already been self-isolating for a number of weeks. Understandably, David admits that he panicked a little and thought ‘This is it, this could be the end.’

David was sent home and told to isolate – even from each other – within the home. This wasn’t easy and the couple had to have separate bedrooms and one ate meals in the conservatory while the other ate in the lounge.  During this time David wasn’t feeling too unwell. He had a cough, some breathlessness and had very low energy levels but wasn’t in any pain – from the virus or from mesothelioma.

He was so lucky but gives us hope and not to panic if we do catch it as others have not been so lucky.

Dave Long’s experience of coronavirus as a mesothelioma patient

Well we are getting near the 4th of June a date I didnt even dare to think we would reach as it is our Diamond Wedding.

We had a huge party planned with lots of celebrations and fun.

Its going to be a strange time now when we cant even see our family but like so many other people we have to make the best of it.

What a year 2020 has become. It will certainly go down in history as a bad year the one 2021 cant come quick enough.

Keep safe xx

Last blog https://rayandmave.wordpress.com/a-diary-of-a-mesowarrior-living-with-mesothelioma-asbestos-coronavirus-scan-day-at-the-royal-marsden/    My Scan result