Living With Mesothelioma -My Diary- A wet day, emails, and phone calls


Oh dear what a wet morning this morning. Ray took Louis out and they both got so I had to rub them down with towels.

So hot coffee made and drunk.

I worked on the computer sorting emails and then made a homemade soup for lunch.

Of shopping and I had made a list to stick to and the Bill still almost hit £100. I cant believe the way prices are going up and the quality is going down.

My Son phoned and he was saying the same thing. We have come to the conclusion we have to find a good butcher. I have farm shops all around us but he hasnt.

I did make a list from http://www.netmums.com/family-food/cooking-tips/kitchen-cupboard-basics

So I have a great store cupboard and I did make  http://www.netmums.com/family-food/family-recipes/budget-recipes/bacon-wrapped-chicken-with-leeks-peas-basil

Bacon wrapped chicken with leeks, peas & basil

Ray has enjoyed.  Louis had his chicken livers so we are fed and happy.

So the site is great for planning simple easy meals.

http://www.netmums.com/user/choose_location great for finding farm shops to.

My young brother phoned for a chat so that passed the afternoon well

I had an email to tell me that I had a Donation to my Just Giving. It is the nice Solicitor that was on the Interview with but saying he didnt think we needed the Innovation Bill. i have explained why I spoke and backed it and he now understands more about the bill. It was so good of him to Donate to Mesothelioma UK. Thankyou so much Mr  Nick Fairweather it was very good of you.

I also had an email from my New friend in Boston.

He said –I am sorry to hear that the meso is progressing. I hope that you and Ray are doing ok and taking it in stride. The Marsden is a wonderful institution and we respect them highly – our CMO Joanna Horobin was recently visiting with them and we hope to be working with them on some earlier-stage compounds later this year. They certainly have the best insight into the ongoing trial work and I am quite pleased that you will be seeing them as you are in good hands.

My crazy travel life continues and I am sure to be back to England soon. This time I will demand to see you! I am so energized and encouraged by the mountains you are moving. You are a very inspiring person and I hope that myself and the team at Verastem can act according to your model. We will continue to push to find better treatments and hopefully change the course of mesothelioma.

Im so happy to inspire a wonderful young man and I will meet him again as it seems he won’t take no for an answer. ha ha !!!

Im getting so much good feed back on the Marsden Im beginning to look forward to meeting them and to find out what we can do to work together to gain me more years.

I had an email thanking me for going to House of Commons regarding the Early Access Scheme


A message from Claire Halpin

Dear Mavis,

Claire Halpin, widow of Empower founder Les Halpin, conveys her thanks to those who came together for the manifesto launch on 25th March. Claire only wishes Les had been there to see the huge step taken with the Early Access Scheme.

Thank you

I would like to say a huge thank-you to everyone who came to, or was involved in the

Parliamentary Lobby on Tuesday 25th March. Especially I would like to thank: Jennifer

Bryant-Pearson, the 3 James’, Patrick and the rest of the team at JBP who organised the

event; to Geoffrey Clifton-Brown who hosted it; and to the inspiring and moving speakers

who took part. It was a fantastic event, and one that Les would have enjoyed immensely –

I am just a little sad that he wasn’t able to be there.

The campaign was launched only 18 months ago, and has achieved an awful lot in the

time it has been going. I know that there are a lot of groups and organisations working

to achieve the same and similar aims as Empower and it is largely thanks to all of these

putting pressure on the Government that we have achieved the recent breakthrough –

the Governments Early Access Scheme. It seems to me that what Empower brought to

the table was the bringing-together of many of these groups, to form a collaboration

of people working together for a common aim.

As those of you who knew Les will know, he was a great networker. Many was the time

when I heard him in conversation with people and posed with the question ‘what can

we do about…this or that’, say ‘I know someone who might be able to help you with

that – I’ll put you in contact with them’.

A good friend of mine once said to me that Les was one of the most charismatic people

he knew. I could never see that of course, but there must have been something in it

because everywhere he went, he made new friends, and what’s more, kept in touch

with them. So by the time he reached his mid-40s, he had this huge circle of friends

and acquaintances, and he took great pleasure in introducing people to one another

whenever he found that they had a common cause or interest.

 

Don’t forget you can show your support for the manifesto on Change.orghttp://www.change.org/en-GB/petitions/uk-government-and-european-medicines-agency-put-patients-at-the-heart-of-medical-innovation-3

You can also encourage your MP to show their support for Empower by

signing this Early Day Motion http://www.parliament.uk/edm/2013-14/1250
Thank you

Claire Halpin

Empower: Access to Medicine

Website: www.accesstomedicine.co.uk

Twitter: @empoweratm

Facebook: Right to Try

Email: info@accesstomedicine.co.uk

Rays Blog http://mesoandme.wordpress.com/2014/04/07/monday-80/

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