Its a long time that I have sat down to write a blog.
My trial at the Marsden is taking so much of our time. We are 850 miles in a week it is unbelievable and although we are paid for parking and mileage it doesn’t cover the wear and tear on the car, thank goodness we updated our car to a newer one as we must have reliability especial with the winter coming.
On October the 1st Ray and I went to the Marine Hotel in Whistable to give a talk to the 41 Club (a club based on The Association of Ex-Round Tablers’ Club where you are only allowed to stay up to 40 years hence a 41 club.
We were there to give a talk on our journey and the work we do with the Foundation as Lisa Goldsworthy, a lovely Mesowarrior that friended me when she was diagnosed. She was a school teacher at our local school
Lisa had always wanted me to talk at the club and her Father contacted me and I agreed to talk after her death.
It was a lovely evening with a nice meal and we gave an after-dinner talk.
They raised £75.00 and donated that to the Mavis Nye Foundation
The next day we put Lous into the kennels and travelled to Chester as the BISF was going to award me with a ‘Outstanding Contribution’ award.at the 2019 BSIF annual Networking event and what a fantastic! event.
Everyone looked after us so well for 2 days of fun and laughter.
We did have a great evening and made so many new friends also they collected over £1100 pounds for the Charity so very grateful to everyone for thinking of the Mavis Nye Foundation.
Next day we travelled to London to the Erase Meso Event at the Brewery in London.
We stayed overnight at the hotel that was there. Directly they saw ray a lady said “Oh you can do with a shower and other items” I said you mean disabled room” “Yes ” she said.
I told Ray he was looking rough !! bless him.
It was a club room and very big but I dont like the wet room. Once the tiles get wet they are so slippery.
We changed for the evening and went to the event.
It was brilliant, well organised.
I don’t know how much money they raised for the Charity but I expect they will announce soon as it must have been a huge amount I played a small part as mavis Nye Foundation had donated the entertainment for the evening and Paul and Jill Cook gave my Foundation and myself so much advertising xx
We relaxed all weekend and then Monday it was off to the Marsden for blood tests to know if I could have my drug all week every 5 days.
All was Ok then on Tuesday they surprised me with an infusion of Pembro. I didn’t think it was so soon after the last one but this was the day to have both drugs together.
Pembrolizumab and a new drug called guadecitabine
Well, I have survived and felt very well if still very tired.
We did sneak in a visit to London yesterday to go to 12 KBW event raising money fro the GEM Study
Gendered Experience of Mesothelioma Study (GEMS) Looking for Participants
The Mavis Nye Foundation donated the welcome Drinks as I wanted to play a small part as I have done my interview and the lady who called me said I had set a hard presidency as I had so much knowledge of the disease. I realised as I spoke that there is a huge gender difference I hope that is what is shown by others.
This morning we got up later and went to get my last Injection. We are really looking forward to having 2 weeks off no. Im at the 3rd session only 31 more to go EKKK!!!
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