A Diary of A Mesowarrior Living With #Mesothelioma #Asbestos -Alan Gully’s Funeral, New Trial, Speech for Annual Asbestos Seminar Written, Mesothelioma Applied Research Foundation Conference


It seems ages since I sat down and wrote my blog. It has been a really busy week.

I had to go shopping as the family were coming for Mothers Day. I didn’t want to go out to a Restaurant as they get so packed any Sunday but mothering Sunday I knew would be a No! NO! I love children but nowadays they seem to let them run riot and so noisy,

So a quiet Sunday was planned.

First on Friday I had to attend the Funeral of Alan the husband of Tess Gully who was a friend as well as a Mesowarrior.

We lived close as Tess lived in Margate.

I wrote this article with Alan’s Permission https://www.linkedin.com/pulse/asbestos-schools-my-dear-friend-tess-the-brent-report-mavis-nye-bcah

alan

Alan lived on so so little time. He did a lot in that time as he sold up and moved away but we kept in touch but he didn’t have time to tell me he had cancer as well and passed so quickly.

The Funeral was very sad but all you could keep saying was the two childhood sweethearts were together again.

Goodnight to a wonderfully loved man xx

I was very sad.

dean

Dean Fennel at MARF Talking about iMIG2017

I had an email from CRUK

CONFIRM trial. We are almost up and running with it now –   Your input was a great help to us to get to this point so a huge thank you for that.

We are setting up our trial management group which will be a team of people who are involved in making decisions about the running of the trial, would like to take part as a patient representative.

Wow try to stop me it would be amazing to play a part in helping others to get on a trial like this.

Than an email from Dean Fennel  a trial called MiST is on the cards .

CRUK non randomised pembro/defactinib trial is opening soon nationally but as a phase 1 recruitment numbers will be limited

It would be great to get your support again, on the trial management group for MiST. I will be in touch with more information soon

Dean has announced all this at  MARF in the US at the weekend. So I’m a real happy Bunny.

I spent the weekend contacting all those that need a trial so the emails are going off.

And still I got a message from a Mesowarrior who’s  Father is really do well but as the scan result was growth again. He was told there is nothing more so that’s it he is off Chemo and Of a trial he was on.  Why don’t they google and hunt on the computer for their Patient. I’m so lost. So I have got him to email for an appointment for a second opinion.

I also had to write a speech for a really prestige meeting https://www.12kbw.co.uk/events/annual-asbestos-seminar/

Annual Asbestos Seminar

Date

Wednesday 5th April 2017

Time

2.00pm – 6.00pm

Venue

Courthouse Hotel in Shoreditch, London, 335-337 Old Street, EC1V 9LL

We are delighted to announce our inaugural Annual Asbestos Seminar.

The Seminar will be held on 5th April 2017 from 2pm to 6pm, at the Courthouse Hotel in Shoreditch, followed by a drinks reception.

The event will be chaired by Harry Steinberg QC and will include talks from Mavis Nye, Brendan Tully, Michael Rawlinson QC and Gemma Scott.

There will also be talks on low level-asbestos exposure, medical and legal aspects of the new wave of immunotherapy, and recent developments (and new thoughts) on dependency claims.

I had met Harry at the book signing of Mary Seacole and he thought it would be great to have me talk the lawyers.

I asked the Mesowarriors if you could ask one question what would it be. I had a lovely response and the questions have been woven into my speech. Ray has approved it so I’m happy now that it’s all ready for the big day.

mothers day

Well Mothers Day came and it was lovely. A very good day with flowers and cards delivered and dinner cooked the day passed so quickly.

Then these next two days I have been live streaming

LIVESTREAMAGENDA_2017

There are other rooms where most people were but here in the live stream with Patients and carers we listened to so many wonderful dedicated Mesothelioma Doctors and Nurses. They amaze me with all their knowledge.

The MesoUK Nurses were there with Liz Darlinson and they played a big part.

liz

mesouk

MesoUK Nurses

Mary Hesdorffer is retiring from MARF and she will be missed although she is playing a part still and I know she will still be giving her help to Mesowarriors where she has been involved with the Mesowarriors for so many years now. always there to give  help and advice. We pass patients to her if they contact us UK as they google for help.

mary

Mary

peter

Then I saw this photo and I saw  Peter Szlosarek standing up at the back always talking medical and Mesothelioma He is a dedicated Man.  They all are and working so hard together for treatment for us Mesowarriors around the world. A huge Thank you to you all xx

 

 

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