Living With Mesothelioma -My Diary- Met a lovely family today at Bluewater. More fighting spirit needed for NHS


birthday for men

 

 

 

 

 

 

 

 

Ray had a lovely birthday as the family all came to see him. He has had lots of presents and cards but on Facebook he had a load of Birthday wishes from his cyber friend’s Which surprised him and made him so happy.

We were shattered and we said good bye to Our son and DIL but I couldnt  relax to get to sleep as so much is going through my head.

A young warrior has died and that does hurt. Every death hurts.

A Murder Mystery night has been planned in his honour to raise funds for Mesothelioma UK here in Seasalter Church.8th March.

Also another warrior is gravely ill in hospital. Our lovely dot and Ernie.

Dot Rogers's photo.

I send all my love and pray he is comfortable and nu suffering. It is so sad we are on a roll like we were last year. There is just no stopping the bad news

We have been to meet Ian and Grace today. Ian has survived 3 years but now has it fluid around the heart. He is breathless, but like me is ok on the flat. We met at Bluewater and had coffee and a lovely chat.

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Group Photo.

a1

We sat there for so long I didnt see it all filling up behind us.

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How would they recognise me —the old girl with the stick he he !!

Its so amazing that Grace and I have spoken on facebook for 3 years and so although we didnt know each other we got on so well with her and Ian. Cyber friends are really special.

We talk together about our lives and how we had got to this point of having to fight Mesothelioma. The time flew by. We left them to go shopping on their own and came home. Catching up on the house work as tomorrow is a big day. An early start to get to The House of Lords and meet Lord Saatchi. Although its for Warriors the Bill is really for all Cancer Patients. We all have the same fight to find treatment and trials. I hope to come home and report everything that is said and what I think of the Bill.

I received this email

You are starting a movement. You and your followers have a genuine opportunity to change the course of medical history in the UK, to help patients and doctors innovate and find new cures and treatments for diseases that are hurting and killing our friends, our families and us. 
 
Health Secretary Jeremy Hunt has promised that if you tell him you want the Medical Innovation Bill – by responding positively to the Department of Health’s consultation – he will pass the Bill into Law. This is it. We have one chance and one chance only. Say yes to medical innovation. Say yes to the Saatchi Bill 
We urge you to get your followers to respond to the consultation. You can do so here: http://saatchibill.tumblr.com  
On the Panel will be  
Chair: Dr Max Pemberton – medic and Daily Telegraph health columnist 
(Lord) Maurice Saatchi – the sponsor of and the inspiration behind the Bill.

Debbie Binner – who lost her daughter Chloe to a rare cancer. Her daughter was too young to get on a drugs trial.

Mike Thomas – best friend of Chloe.

Charlie Chan – a Consultant General Surgeon with a special interest in breast disease, skin cancer, and soft tissue tumours.

Prof David Walker – Professor of Paediatric Oncology, Faculty of Medicine & Health Sciences at the University of Nottingham. 

They will speak for 5 minutes each and then take your questions. 
My question that they have really took an interest in is :-

Good Morning Dominic
My Question is -Do you realise that By my living 5 years instead of 3 months, as I was told and having 4 lines of Chemo Im told by my Oncologist there is no more treatment. I have had to spend a lot of money and time knocking on Other hospital doors searching the country for treatment, as my Mesothelioma is growing again. I feel so strong in mind but not in body that I can go on in treatment and what does it matter if its at Phase 1 on a trial Im terminal what harm could it do, I have to sign consent form anyway.
I should not have to chase treatment it should all be on a central bank for my Oncologist to find the treatment is out there.
Kindest Regards Mavis Nye
I think I have got to stand up and put this over Ekkk!!
I thought this was the end of my Blog then hay ho !!! Another fight has come to me.

Dear Mavis,

Jeremy Hunt is trying to sneak through a law which will give him the power to quickly close any local hospital without listening to local people. No hospital is safe.
He’s changing the rules after losing twice in court trying to close Lewisham Hospital against the wishes of local people, doctors and nurses. The sweeping new law – the ‘hospital closure clause’ of the Care Bill – will give the government the power to shut down any hospital, in as little as 40 days, regardless of how well the hospital is performing. [1]
Jeremy Hunt is hell-bent on pushing this through. And time’s not on our side. It could be as little as one week before MPs vote this sinister threat into a reality.
If we’re going to have a chance of stopping Jeremy Hunt we need to throw the kitchen sink at this. And we need to move fast.

Vote now to decide whether or not we should launch a big ampaign. Yes or No?

YES – WE SHOULD

Our NHS is precious. And it’s important that we know hospitals, accident and emergency and maternity services are there for us in moments of crisis and joy. It’s terrifying to imagine the government having the power to close any hospital without hearing the wishes of the local community.
It’s going to be tough to stop Jeremy Hunt. But we’ve done it before – twice in Lewisham alone. And if enough of us are keen, there are exciting possibilities for next steps. And new tactics we could try which would take even Jeremy Hunt by surprise!

The 38 Degrees staff team sit down on Monday morning to plan out the week ahead and decide on how we split up staff resources. The most important factor when making those decisions is what 38 Degrees members think.

Should trying to stop the hospital closure clause be 38 Degrees’ top priority over the next few weeks? Please vote now to help decide whether to launch a big campaign by clicking on the buttons below.

NO – WE SHOULDN’T

Thanks for being involved,
Becky, Ian, Rebecca, David

PS: A study of NHS foundation trusts in England has found the number of those in financial trouble has nearly doubled in a year from 21 to 39. Jeremy Hunt has shown before he’s willing to close good hospitals to bail out ones which are struggling – this law would allow him to do this, even if local patients and doctors were strongly against it. [3]

Where is my fighting hat !!!!

 
 
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