Diary Of A Mesowarrior Living With Mesothelioma.-No Transport, A Skype Meeting With Some Mesowarriors and My Doctor.Patients Being Listened To.


Yesterday was such a busy day. The car was taken away for the first MOT and the last free service. It was on a collect and return which we was pleased about but then realised we had no wheels for the day. Louis played up as he missed his trip out.

Sulked all day.

I then had arranged for a mesowarrior Skype meeting with my Mesothelioma Team Doctor. I’m his patient rep for Research and he is arranging funding for a trial and wanted a patients view on Chemo, was the trial worth while and had asked me to arrange a meeting with other Mesothelioma Patients.

As we are all on Skype that seemed the best way to do it but my Doctor wasn’t–well he is now and he loved the experience.

I didn’t have my picture on though and I didn’t want to touch and have anything go wrong. Afterwards it was so easy as the symbol was there and I only had to click but anyway he has seen enough of me through the years .

Another problem was that one of the mesowarriors had only just asked me to accept her and so the meeting had started and try as I might I could get her added. I was so sorry and will make sure she is in on the next one we do.

We all had a chance to hear what the trial will entail and we were all able to put our thoughts across. I feel the doctor really did know what a patient of mesothelioma goes though and he listened intently to our views.

He really did love the experience and asked if we would do it again so we are always here to help. we will get minutes of the meeting sent to us which surprised me that it was such an official meeting. It is the way the world has come into the 21 Century and Computers do play a great part as we sit in our own home and yet can have an important meeting like this.

So when it was all finished and turned off I really felt it was a job well done.

I had a neighbour visit and was asking about halogen bulbs why they don’t last long and we had a chat and she went home and we had lunch.

Then I had a phone call to do an Interview for my local paper about the Governments U Turn on the £10,000 up front payment the Government had wanted to charge when a Compensation Claim was made. I said that had happened in July and I had blogged on the 3rd July. He was surprised it was that long ago and I realised that I’m missing out and I really should talk to him more when I have news of things going on.

He also talked about my Drug Trial and how I was doing so he is really going to write a longer piece now for next week.

When the phone was put down I thought I would write an article I had been asked to do for November but I was in the mood and I spent a couple of hours then  writing away. That has been emailed off so I have a empty to-do list.

I have a speech to write for Mesothelioma Uk when ray and I are going to do a duo speech which will be fun. We are all booked in for Stratford -On Avon and a lovely Hotel there

Picture of Macdonald Alveston Manor

Date: Friday 2nd October 2015

Registration: 9.30 am

Venue: Macdonald Alveston Manor, Clopton Bridge, Stratford-upon-Avon, CV37 7HP
Aims to give mesothelioma patients, carers and relatives the chance to meet and share experiences with others, to give up-to-date, unbiased information about mesothelioma and to give patients, carers and relatives the chance to raise issues and ask questions.

Patients, Relatives and Friends can attend free of charge.There is a charge for all other attendees, please see registration form below.

Due to the size of the venue priority will be given to patients, relatives and friends.

The programme for the day will include:

  • Understanding trials
  • Trials update
  • Patient stories
  • “Well being session”
  • Asbestos awareness
  • Fundraising for MUK – a fundraiser’s story
  • The role of the MUK Benefits Adviser

http://www.mesothelioma.uk.com/news/events-conferences/2015/patient-carer-day-2015-stratford/

So I’m really looking forward to this and meeting up with so many friends old and new.

We have some very sick Mesowarriors at the moment and I send all my love to them and their Carers. I hate that they are so ill and hope all the trials we have discussed will help them at the various hospital. Those that have got appointments at the Royal Marsden i hope to meet up with but we are not there on the same day. I always do ask every Tuesday if any one is there with Mesothelioma just so I can then say hello.Most of them are on 3 week cycles and so my 2 weeks means I don’t see them for a while but we do keep in touch.

One Mesowarrior had surgery yesterday and his family are keeping me informed on how he is doing. He wasn’t out last night so I’m on tenterhooks waiting this morning.

Just checked and no news maybe he is sleeping still I wish him a speedy recovery.

Rays Bog https://mesoandme.wordpress.com/2015/09/03/thursday-135/

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