At the Marsden today I was asked if I would like to take part in a Survey. It was explained its voluntary. Of course I agreed.
It took approx 1 hour. I can’t remember all of it now but it started with Lorraine saying there will be no formal pathway, There were some key question s but apart from that the interview would be more of an off the cuff response from me. Questions took the line of:-
Why did we get to contacting Marsden.
Answer it was our last chance ,having been told there was no more traditional treatment for us. WE had run out of Chemo options.
We were advised that a New Trial was starting which may be of benefit to us.
What was the primary interview like did it inspire us, was it explained clearly, did we feel we were treated with a caring positive hopeful approach.
Yes we did everyone here at the Marsden is so caring , WE feel we are in the best place you are all so hardworking.
Did I feel I was personally included in any discussions.
Absolutely
What impact did this trial have on our lives what impact does it have on immediate family
What impact on friends. We have so many friends on our onestopmesothelioma web and blog pages and many more on our motorhome camping friends.
What impact does the travel and schedule have.
The questions came and I tried to respond as honest as I could. There was a point in this that I had to stop. I was breaking up. She asked me if I wanted to stop as she could see I was upset. She understood it was an emotional subject. But I quickly composed and we continued. What sort if any support did I as a carer receive. I said I don’t seek support and I don’t receive any professional support. I said I am not in the realm of waving a placard stating my heart is bleeding for mavis. At most there are approx 4 close neighbours who are aware of our immediate situation. Family support is confined to our son and Mavis 2 brothers. All very close. We have never been a couple in and out neighbours for cups of tea. we have been a rather private family.
Things have changed with mavis global network all her followers are aware because it’s a very large network of like-minded and professionals whom are also affected .
There were so many more questions but at this point in time I am shattered and my brain has shut down I am tired after a long day.
For us today it was a 12 hour day. We left at 10 to 6 this morning and it was 10 past 6 tonight when we opened the door to a very happy to see us Louis.
