A Diary Of A #Mesowarrior #asbestos Living With #Mesothelioma — We spoke at Sir Robert MacAlpine @SRM and Ray started his treatment for #Lymphoma

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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A Diary OF a #Mesowarrior Living With #Mesothelioma #Asbestos –Jack Frost visited us and caused trouble. Scan result also trouble.

We woke up 4.45 to go to the Royal Marsden for my treatment but Ray took the dog for a walk first and when he came back he said he had to go and de Ice the car.

So I finished getting ready and then locked up and joined him.

He was so worried as he couldn’t get the car into 2nd gear so I said well get going in 2nd and see what happens.

It worked ok and we set off. Then in the traffic jam 1st worked but 5th stopped so we held our breath and got to the Royal Masden on time.

Then as I got out of the car I didn’t realize that puddle was all ice and bang I was on my bottom. A man came over and lifted me up. What a gentleman, I kept thanking him but my trousers were soaked on the bottom. Embarrassed.

That’s just how I felt.

When I went in for my blood to be taken I had to sit on a towel and that helped to dry.

When I went in to see the Doctor he told us that my scan is showing the new Meso is growing, very slow growth but the thickening is showing that cancer cells are beginning to multiply.

Not the news I wanted to hear but he said that as it was slow and hardly measurable they are going to go on to the next scan.

So he passed the drug for this week.

It doesn’t hit you, it doesn’t compute, your brain won’t let it.

They have the next trial for me so they can’t do any more than they are already doing. The fight goes on 

 

 

 

 

 

 

 

 

So I pulled my socks up and left the room to go out there and keep fighting this disease it is not going to win.

Off we went to the canteen and a lovely hot chocolate —comfort drink that !!

On returning to the waiting room I did a crossword and then fell asleep but was woken up by Rex as my drug was ready.

Ray gave his Valentine card to his Fav nurse Carol who cuddled and kissed him.

 

 

 

 

 

 

 

A man in the shop had asked Ray who was it for the wife and Ray had said no my bit on the side !!!

The drug was soon running through my veins and I had a long chat with my Trial nurse about what was going to happen next so I’m already if it is bad news next scan but all fingers are crossed and we will meet it head-on.

Now its Rays turn on Friday, let another battle begin.

We said our goodbyes and do you know the car behaved itself. The gears were back to normal. Was it really that cold this morning that it froze the gears ??

https://mydonate.bt.com/fundraisers/mavisnye-cyclechallenge?fbclid=IwAR2NXIhdjZEf1PW2IVR9ugVXIytB1viDblSCyUhj5_qhBuTTcR4XIIJb7LU Event details
Mavis Nye Beacon Clycle Challenge
After a visit to our factory from Mavis and Ray Nye, our staff were inspired to do something to help raise money for Mavis’s fantastic charity.
We have a team of cyclist who will be embarking on a gruelling challenge to help raise as much money as possible for the Mavis Nye foundation and also help raise awareness about mesothelioma and other lung diseases.
We plan to set of from our most Northerly depot in Washington in Tyne and Wear, we’ll cycle down to our Leeds depot on day one. The next day we’ll set off from Leeds down to our central office and headquarters in Desborough in Northamptonshire. On the third and final day we’ll set off from Desborough down to our most Southerly office in West Thurrock just outside London.
The whole trip will be in excess of 350 miles, Mavis and Ray Nye will be waiting at out final location to receive our cyclist as they finish their mammoth journey.
Please give generously to this amazing charity which has done wonders for developing treatments for mesothelioma suffers.
Event date
29-May-2019 00:00 –
31-May-2019 00:00
Event type
Cycling
Mavis Nye Beacon Cycle Challenge

 

 

 

 

 

Please Donate or even better join in get the bike out for May

Goodnight Dr Mags our little dragonfly #Mesothelioma #asbestos

 

 

 

 

 

 

 

 

We have lost our Mags Portman –Our hearts are breaking as she was so wonderful. Our own Doctor suffering with our disease  Mesothelioma when she had given so much to HIV. She set up the Terence Higgins Fund https://inews.co.uk/news/health/prep-hiv-fund-low-income-nhs-terrence-higgins-trust/?fbclid=IwAR1uU2g7k3kXfbY50dy4k6yaPGaxkIHF2llK8fvHCRftUDgYn4koUKb7nRw

Mags passed yesterday Morning at the Hospice she went into Sunday. I have had messages from her right up to last week becuse she wanted to go into the MIST trial sadly she didn’t make that.

Our love and hugs go out to her husband Martin and the two very young children. Its those that we think off, that’s the problem with Meso in younger people they leave behind very young children we are seeing a newer trend -it’s not an old man’s disease we have reached that peak now we are seeing a newer peak of younger Mesowarriors so so sad

Mags wrote a blog where she shared her journey https://notdoingthingsbyhalf.wordpress.com/

Her first write up was :-

Realise that in my last post I referred to my pending CT scan as though it was all arranged. In fact, it wasn’t quite a simple as that.
I also realise that I hadn’t even told you what all the fuss was about, why I was so worried about the prospect of needing a CT… Well.
In the end, a GP called me back and told me about my chest Xray. She read out the report verbatim. I remember hearing the words “Moderate pleural effusion, loss of lung volume, pleural thickening, fluid in the horizontal fissure, differential diagnosis: infection or malignancy”. Basically, fluid on the lung, with thickening of the membrane around the lung, likely to be due to infection or cancer.
Could it be TB? I was certainly at risk. I had worked on the Infectious Diseases ward at St James Hospital and knew I had virtually no immunity to TB when last checked. But, I knew that I had no other symptoms of TB…. No fevers or night sweats…. DARN!!!!! Now I knew there was a problem, I also knew that it had been going on for a long time, so whatever it turned out to be, was unlikely to be a straightforward infection. I recalled having some right-sided chest pain which resolved spontaneously: my GP confirmed this was as long ago as November 2015. Oh dear. I had put this down to commuting with my bike and having pulled a muscle. I was a “fit” 41y old at the time, why would it have been anything but????!!!!!
My mind went into overdrive. I had left work at Mortimer Market Centre as a doctor, and I arrived home dancing the tightrope between doctor and patient. I needed to know what was going on. At this point, I hadn’t yet been given a date for CT scan.
So, I did what I could do, and contacted a previous colleague and friend, a Consultant in Respiratory Medicine. I felt uncomfortable about doing this and was aware that this opportunity was only available to me because I was a doctor. How on earth did other people cope with being in limbo-land? I was able to justify my actions to myself because I knew that if a colleague contacted me for help, I would do my utmost to support them. We spoke, and he was able to talk me through things.
I had been listed for the Respiratory MDT meeting happening the following week, so this meant that I would definitely get my CT scan before then. I told him I was terrified and would really value seeing him in the clinic as a familiar face (I know, probably stepping over the line a little – sorry). He handled me (and my anxiety) very well and suggested that perhaps he wasn’t the best person to see me, but one of his colleagues Dr Matt Callister or Dr Kirsty Rodger would be. I didn’t know them, or their role, as it had been over 10 years since I had worked in the department. I persuaded myself not to Google them. I was Eternally Grateful for this supportive conversation. Dr John Watson – thank you +++
……..Okay, so I managed to hold off Googling Dr Callister and Rodger for a whole 24 hours. And when I did, it turns out that their specialist interests were Lung Cancer. Hmmm.
So, the CT happened at Leeds General Infirmary. All quite impressive. Not a huge waiting time. Lots of checking and cross-checking of identification and medical history. Didn’t have to wear a gown (yay!). CT contrast makes you feel flushed, heart racing, a bit like taking poppers, I would imagine. It also makes you feel as though you are going to wet yourself – who knew?! I felt that I really should have known this having ordered 100’s of CT scans, but I didn’t. It made me think that perhaps medical/nursing students should actually experience the process of having certain tests, to enable them to be able to explain things to patients more effectively.
The next morning I took the kids to school as usual, arrived home and sat down on the sofa. It was 5 minutes past 9. The home phone rang. No one usually rings this phone, and usually, I don’t answer it. But, I had a feeling that I should answer this call. And I was right…
It was the GP surgery. Could I go down that morning at 11am to see my usual GP? She had asked to see me. Oh. That doesn’t sound good. It felt like each step in the process was confirming what I had dreaded as soon as I’d had the original “call to CT”.
And, of course, I was right. The CT report was pretty horrendous, and I say that as a glass half full person. To me, it was simply confirming what I had expected, and my lovely GP ended up more upset than I was. I took away a copy of the scan report, which I’m glad, as at the time, the extent of disease didn’t really hit me.
Findings: There is irregular, circumferential pleural thickening throughout the right hemithorax associated with a moderate pleural effusion. The pleural disease is nodular and highly suggestive of a malignant process. Passive atelectasis is present in the right lung but no primary lesion or endobronchial disease. The left lung and pleural space are clear and there is no calcification on either side…..
Comment: Malignant looking right-sided pleural disease, for which the differential lies between primary mesothelioma (which seems unlikely in a patient of this age), and metastatic disease.
NB Whenever I have seen the comment “seems unlikely in this patient because..” written in a radiology report, then that differential turns out to be the correct diagnosis….
I walked up the hill from the GP surgery, with my other half Martin, to Storie’s cafe in Oakwood http://www.storiescafe.co.uk – worth a visit if you live in and around Leeds! Makes me think I could be in beloved East London. And yes, I could still walk and cycle uphill!!! Unusually for me I chose to sit facing away from all the other cafe-goers. We sat, and shed some tears, trying to take in the enormity of the result I had just been given. How do you begin to come to terms with a tumour that is circumferential throughout your hemithorax?

I met Mags at Mesothelioma UK’s Patient Carer day but we had been Cyber friends fo some time then.

A doctor coming to me to ask what trial is there, what new treatment can I try. we became such real friends and i added her into my groups and to the Mesowarrior groups. She was so lovely so fragile. I will miss her so much And she is mourned by the Mesothelioma Community and the NHS and far more !!!

Sweet smile on your face as you sleep the pain away,
Resting in God’s arms now, although in the ground your body lay.
He needed another angel in the Heavenly choir and that’s why you had to go.
As you promised, you are still with us watching your children here below.
I never would have imagined the end would be like this, me comforting you.
Holding your hand, telling you not to worry was not an easy thing for me to do.
And even in your weakest hour you tried to comfort me too,
Caressing my face, and calming my soul as only a mother can soothe.
You have always been there through the thick and the thin
No matter what I’ve done, unconditionally your love never wavering.
When I told you of the mistakes I made and all the times people saw me fall
You simply nodded and gently replied ‘so have we all’.
The key to success is learning from the past
Ensuring a brighter future is now the present task.
A pillar of strength even until the end
Fighting all life’s battles, knowing it triumphantly you would win
Pushing me to be the best that you know I can be
Reminding me to keep the faith and allow God to lead me.
Knowing it’s through Christ that I can do all things
And as He never makes a mistake I will come through victoriously.
I miss you more than these words could ever say
The pain in my heart is from one unimaginable day
After I cried all that I could; my eyes still shed countless more tears
And when I try to sleep, I have nightmares of ten-thousand fears
I walk in footsteps on an unsure path
My load feels so heavy I am not sure I will last.
Silly though I may be, I am afraid of life now that you’re gone
Because I’ve always had a mother.
And Mommy, what about my sister and baby brother.
I wish you could have stayed just a little while longer, there’s so much left to do
I wonder if I prayed hard enough and if so, did they get through.
Finding relief in knowing I will see you again someday soon
Remembering all you taught me as my soul I continue to groom
I will walk in footsteps you have walked before me
Seeing the path you walked lead you, Mommy, straight into victory.
So as you sleep Mommy, in the cradle of the Lord,
I am reassured of God’s promises in His Holy Word.
I dream of the day when Heaven’s gates open to receive me
And with your smiling face and loving eyes, reunited once again I will be.

A Diary Of A #Mesowarrior Living with #Mesothelioma #Asbestos– Ray is ready for his cancer treatment next Friday and Mesowarriors were spoken about in parliament yesterday-A day of Mesothelioma Awareness

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Oh, how we need spring to pop its head up.

Ray has now joined me with cancer treatment yes he is even going to have Immunotherapy for his Lymphoma much to our surprise.

But he went to the hospital yesterday to do his pretreatment and they play a film. We sat there and laughed as it was all our local doctors and nurses. Dr. Shah from Maidstone was in it talking about chemo, I said to Ray he is going to pop out of there and say “Hi Mavis how are you ” as he always greets me when he sees me.

The thing is Ray is having Immunotherapy and yet they show a film of chemotherapy. They haven’t caught up yet, have they. Immunotherapy is so different and the side effects are not so severe.

But with all that done and blood is taken he is ready for next Friday’s treatment of Rituximab.

They put it into the vein slowly of 6 hours for the first one and monitor for any side effects. If OK next time will be faster. He has a buddy as our friend Tracy who lost her father to meso is going to have it but she has Rheumatoid Arthritis. but they will be able to chat about it each week.

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/rituximab

Now that is all planned we know where we are and can work the dates into the diary.

Yesterday in the House of Commons was a great day for Mesothelioma awareness

It was our day in Parliament yesterday check this out SNP MP Peter Grant says it is “disappointing” that the government will not increase payments automatically every year in line with inflation.
He calls for this to be imposed by next year at the latest.
3,000 people lose their lives to mesothelioma every year, he says, noting the former MP for his constituency, John McDougall, died of mesothelioma aged just 60.
Delays to compensation payments were caused by the fact that employers knew if they could keep a case going until the employee died, the payout would be reduced, he says.
“This is an insidious, vile way to treat people”, he adds.

https://www.bbc.co.uk/news/live/uk-politics-parliaments-47119709?ns_mchannel=social&ns_source=twitter&ns_campaign=bbc_live&ns_linkname=5c5ae5591c3be5066300c962%26SNP+MP%3A+Payments+should+rise+with+inflation%262019-02-06T13%3A57%3A00.291Z&ns_fee=0&pinned_post_locator=urn%3Aasset%3Acc0bbc62-258a-433c-9d4d-156da9885d59&pinned_post_asset_id=5c5ae5591c3be5066300c962&pinned_post_type=share&fbclid=IwAR1aKxIoC9NBy1oCLPuQdF-IRZ1gkakq4QA57I14q6_yGMbIkEf8gzsN7ks

Then A mesowarrior was spoken of which was great for awareness

House Of Commons for Mesothelioma and Asbestos Awareness Dennis Skinner MP speaking in House of Commons today about social security motions including increase in payments for mesothelioma sufferers.

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos —The #BTOG2019 Conference In Ireland

This week I have been to Ireland to BTOG https://www.vjoncology.com/event/btog-2019/

I can’t possibly write all the info here as it was three days of intense information as there is so much going on now with clinical trials.

10 Years ago there was nothing for Mesothelioma and now there is so much. I’m very proud to have played such a huge part in the story.

The link is all the talks that we heard so please work your way through and see for yourself.

I will tell you my story and what I did.

We started at Luton Airport where we arrived early and hadn’t noticed the snow. One runway was closed so this delayed our journey and we didn’t arrive until midnight so it was straight to bed as we had an early morning next day.

It was lovely to meet old and make new friends the next day.

We sat through all the lectures and gathered so much information.

I bumped into a dear friend Micheal Rawlings and I told him all my news of his Companies drug. He was amazed and will relay back to MSD which who Im so grateful to.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I stayed around the Hugh James stand and we attracted so many people to the Mavis Nye Foundations application form for the Research Grant that we are now able to present. I hope we get a great return of forms as there was so much interest in what we do.

 

 

 

 

 

 

 

 

 

I sneaked in to watch Tim-Benepal Consultant Medical Oncologist at St George’s and Parkside Hospital as he is on the Advisory Committee of the Foundation and its the first time I have heard him speak.

 

 

 

 

 

 

 

I had many discussions with others so many know me so I smile at everyone as I can’t remember all the names.

 

 

 

 

 

 

 

 

 

Playing my part

The meals were so good as the food was the best. Irish stew was on the menu of course. The whole event was top notch well done to Dawn who organizes the whole show and Sanja who chairs the whole event they work so hard with so many people.

I’m so proud of all our NHS and would like to say a huge thank you for all do in such hard times. you all deserve a meddle.

 

 

 

 

 

 

 

 

 

Ray caught this photo as the man was spraying with a mask on all so correct but passersby didn’t have protection. We didn’t know what was going on of what he was spraying.

So the event came to an end and everyone went to catch planes and trains.

Ray and I sat down as we were flying home next morning early 7.30am  Oh no we weren’t. !!! We lucky enough checked our flight papers and we were booked for Friday morning.

Oh no! we were all packed on the Airbus and traveled through rush hour traffic to the Airport rushed up to talk to a lovely young man at the Ryanair desk.

So pleased to have been given tickets for the 6.30 flight as he was able to squeeze us in Saturday Morning even though we wouldn’t be sitting next to one another. We paid a E100 transfer fee but we didn’t care just so long as we got home.

It wasn’t worth going to a hotel so we lived in the Airport but I was pleased we did. We had the opportunity of watching love as people arrived in their loved one’s arms. Lovers, friends Mums and Dads and little children running crying to their Dads, Grandparents it was all too much and so emotional I was in tears so many times.

Then at 1am, it all went quiet. we did meet lovely people to talk to and we had lots of coffee to stay awake.

On getting our boarding passes at 3am and walked to the departure lounge but being on first flights the gate numbers were up so we were able to go to our gate. How I wish it was always like that.

Onto the plane and I sat next to a lovely young lad that fell asleep and when we landed with a huge bump he woke up in shock. He thought we had crashed. I put my hand on his arm and assured him we hadn’t.

At Stansted no trains only busses. Onto a bus to Liverpool Street Station. Underground to St Pancras where it was train to home and pick up Louis from the kennels. He was happy to see us and that was it, Journey, over.

What an adventure. I said to Ray I bet I cant say are you going next year, He smiled. We will don’t worry xx

 

 

 

A Mesowarrior Living With #Mesothelioma #asbestos – We have Launched the Mavis Nye Foundation Grants for Clinical Trials for Mesothelioma

 

 

 

 

 

 

 

 

 

 

 

Gosh I can’t believe I have sat down to do a blog at last.

Life has been very busy from the new year. Planning to decorate and sorting out how to do that. It does take a little longer when you don’t feel 100% but I do want to have a go.

Trips to London to sort out the Launching of the Research Grants and the spreading of the word. I really want to encourage younger people to come forward with their ideas for Research into Mesothelioma.

I have sent the advert to Uni’s etc etc so if you know anywhere please forward.

 

 

 

 

 

 

 

Thanks to so many that have backed the Foundation in 2018 We are able to Launch my dream of grants for Mesothelioma Research. 2019 is going to be so exciting as not only have I survived 10 years in May 2019 My Case is going to published by The Royal Marsden as my DNA has thrown up so many answers to Immunotherapy but I have become the first person in the world to re-challenge Pembrolizumab (Keytruda) by MSD
I know it as the MK3475-28 Trial that I was so lucky to get on in 2014. I wouldn’t be here now if I hadn’t got on the trial and as I only had 1% PDL1 I almost didn’t make it.
Now I have so much PDL1 thanks to Pembro. The story goes on and on so I wanted to pay back to the NHS for all their care hence My Foundation. It is unusual for a Foundation to be raised by a Patient as the sad truth is Mesothelioma is so deadly and takes a life in a few months. years I was given 3 months but I’m so grateful to be here 10 years later. and now please share around and help me find the person that has an idea of treatment. They might be at Uni our a student in a Lab somewhere I want to find that person and help him to help us Mesowarriors.
This Foundation is built on love for fellow Mesowarriors in the future. They need us.
https://www.mavisnyefoundation.com/mavis-nye-foundation-res… Mavis Nye Foundation Grant The form is on this link
The Mavis Nye Foundation is awarding its first clinical research grants to mark the first anniversary of the charity. Following a year of fundraising from hundreds of generous supporters, the Mavis Nye Foundation is welcoming applications for grants.
One of the key aims of the charity is clinical research for the treatment of mesothelioma and other asbestos-related diseases and grants will be awarded for applications that fit these criteria.
Clinical Research grants will be awarded for projects up to £10,000.
The opening date for the Grant applications will be 2 January 2019.
The closing date for applications is 31st March 2019. The successful applicants will be announced in April 2019.
The application form can be downloaded click on the link above
https://ramos72.wixsite.com/mnf-donation-info

We have lost so many lovely Mesowarriors since Christmas. I know this happens because winter brings virus and I to had the bad coughing one so I know how quickly we can go under. I had treatment stopped for 2 sessions and antibiotics. I had slept for 4 days solid so I did frighten everyone but I have recovered well and Im back on treatment and a scan will be on Feb 4th. This is the one that will decide whether I stay on the rechallange or a new trial. They are sequencing my DNA to find a drug we could use with Pembro. They are not happy with stable my team wants complete response again.

Ray has a telephone appointment on the 30th Jan and then he goes into treatment for his non-Hodgkins Lymphoma on 1st Feb. I can’t get my head around that he has cancer as well and we have just carried on as normal.

 

 

 

 

 

 

 

 

 

We have had a shock that Christine Winters has passed so suddenly The message from Mark was so unbelievable

It is with great regret that I have to inform you at 11am Sunday 6th January 2019 Christine past away.
To those people who knew Christine via this and other electronic platforms I thank you for the support, happiness, and joy you brought her, she derived great pleasure from your communications.
Christine was a very special person and passionate about the causes she believed in, from her love of fighting for the rights of her beloved Staffy breeds to her staunch fight in raising awareness to the terrible curse of asbestos diseases.
Christine dedicated many years of her life in the fight to ban asbestos globally, whilst striving to raise awareness in the UK through education of those workers exposed to this terrible killer dust.

I met her and her husband Mark in 2010 when they were involved with IATP. She wasn’t a Mesowarrior but was in the world of Asbestos. I met her and her husband Mark in 2010 when they were involved with IATP.

 

 

 

 

 

 

RIP Christine My thoughts and prayers are with you and your Mark, Daughter and the two Staffs that were your world

 

A Diary Of A mesowarrior Living With #Mesothelioma #Asbestos — What we did for Christmas and New Year Still on Keytruda Trial for now

 

 

 

 

 

 

 

 

Happy New as I go into my 10th year of Mesothelioma. Yes it will be 10 years since Mar 2009 when we came back from Spain and I couldn’t breath.

I started to do a look back on 2018 and trying and pick out the best bits but we have done so much, spoken at so many lovely venues and met so many lovely people. I think its time just to look forward to 2019 and make it the best year yet.

Our Christmas has been just wonderful but what makes it so wonderful is to hear the family say that as well.

We drove up to Luton on Christmas Day as I panicked about traffic Christmas Eve but I bet it was empty.

A lovely Dinner was waiting Fortnum and Mansons Mince pies Christmas Pud and Cake such lovely food.

 

 

 

 

 

 

 

 

 

So all full up we relaxed as we had eaten over several hours and lots of chat.

 

 

 

 

 

 

 

Boxing day we went on our Christmas walk and can’t believe that two birds were fighting in the water and one drowned the other one.

A woman was talking to us about how cruel nature is but really we humans are the same. After we put the world to rights we came home and more food.

We didn’t go in the Motor Home and their bed is so comfortable hmmm I will be using that bed again that,s for sure.

So that bought us to the best day as we came into London and to Somerset House and Ice Skating.

https://www.ticketmaster.co.uk/skatesomersethouse?ds_rl=1250513&gclid=EAIaIQobChMIzJTtgc7M3wIVqrvtCh15lAByEAAYASAAEgLiS_D_BwE&gclsrc=aw.ds

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

No! I didn’t go on the Ice – Ray and I went shopping in Fortnum and Masons to buy a treat and then sat in a warm lounge and watched as they went round and round.

 

 

 

 

 

 

Then I treated everyone to a meal in a Lovely Hotel.

Adrienne Warren and Kobna Holdbrook-Smith. Photo: Manuel Harlan

off to the show now and we had tickets for TINA which was just a brilliant, if sad story.

If you go to see it Brace yourself – here comes the next mega-hit jukebox musical. Tina, which opened with a bang in the West End this week and looks set to stay there for some time, is the latest in a long line of big-budget tribute-band bonanzas.

The legendary soul singer’s life story is put on stage in a production directed by Phyllida Lloyd, who took the reigns of ceaseless smash-hit Mamma Mia! back in 1999, written by Katori Hall, who picked up an Olivier for her play The Mountaintop in 2010, and starring American actress Adrienne Warren as Turner.

Warren is pretty unknown in the UK – this is her West End debut – but she’s a big name on Broadway. Alongside her is British actor Kobna Holdbrook-Smith as Turner’s husband Ike, who manipulated and abused Turner during their ill-fated 20-year marriage.

But will Warren hold a candle to the iconic singer? Will Lloyd channel the magic of Turner’s legendary live shows? Is this new jukebox juggernaut simply the best?

A scene from Tina: The Tina Turner Musical. Photo: Manuel Harlan

A scene from Tina: The Tina Turner Musical. Photo: Manuel Harlan

Adrienne Warren in Tina: The Tina Turner Musical. Photo: Manuel Harlan

I hated Icke he was so cruel to Tina.

https://www.thestage.co.uk/opinion/2018/tina-the-tina-turner-musical-at-aldwych-theatre-london-review-round-up/   

So that was our Christmas and a lovely one at that.

We came home on a fairly easy traffic road on erm what day ??? we always have lost what day it is over Christmas.

All the washing was done and then Monday was the Royal Marsden day. Life got back to normal early. New Years Eve- We got up at 4.30am but at 5.45 we sailed through on an empty road. we could have left later.

The lady came in from Cornwall she had a bad journey as Aeroplanes messed up then she got off at the wrong station in London to get the train to Sutton so she had to wait for a taxi.

The hospital was empty Ray asked if I had the wrong date in my diary but no I was right and I soon had my bloods taken. The Doctor made me laugh. He has told me Im the first person in the world that is rechallanging the drug and they are waiting for my next scan to know how to move forward. That is Feb.

Then the Doctor asked Ray how he was getting on and even examined his throat and under the ear. Turns out he knows Lymphoma well from his Australian training and the drug they are going to use works well. So we will know where to talk and ask questions when Ray gets his treatment in Feb.

February is going to be a big month for us.

So we came home but we were so tired and worn out we fell asleep instead of waiting for the New Year

I do remember all the Mesowarriors that haven’t got through the year. Survivors guilt does weigh heavy of course. I miss so many from the groups and have added so many new ones. This must change we must do all we can.

I must have been saved for a reason so I will keep going and work hard at the Foundation and raising money to help Research of Mesothelioma.

 

 

 

 

 

 

 

 

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

If you wish to Donate to help me on my quest I would be very grateful and watch this space 2019 is going to be so exciting. My DNA and Medical case is going to be published by the Royal Marsden Drugs development.

Im involved in the Launch of a new idea for Asbestos Safety watch this Company Web Page as they are also doing a cycle ride to raise money for Mavis Nye Foundation  http://www.beaconinternational.co.uk/ 

Also we are booked for many Conferences and so we have to keep our presentations up todate which is hard as the story changes all the time.

Happy New Year