Re: it's Jane's life - it is our life

[Guest guest]

Dear Sue,

I took the same attitude as your father, when I was diagnosed back in 2002, and I meant to stick to eat, only my GP supported me with my ideas, some of the consultants I saw did lose their tolerance with me being so stubborn, but I had my own believes.

As time went by and they saw I was not going to change my ways they adapted to me and treated me mildly, until I manage to get all my prognostic markers done at Bourmouth and knew how my CLL was going to be, I had said I would never take fluradabine, but in the end I took fluradabine Lite, my prognostic markers are bad and I only got partial remissions, the choice, in my mind was palliative treatment and I even had a long conversation about what happens at the end when everything fails with Terry Hamblin, we went from one thing to the next and covered it all. No many doctors are open enough to talk about such things, I felt better knowing.

I think my NHS consultant as I had to go back to her, did not want to let me go, and had changed her attitude and treated me knowing I was very stubborn, so her psychology worked and I agreed to see the London professor, of course she well knew that if I saw him I would like him and would change my mind.

So here I am now 6 years after diagnosed doing something I thought only the young do.

Sue I am glad you are respecting your father's views, my son came with me to see my lady consultant and he asked me if I wanted him to come inside with me, I said I did not mind but did not want to have to argue with two people instead of one if he was persuaded. His reply was, that would never happen and whatever I decided he would respect and support and that is the way both my children have supported me.

When we talked about the SCT my daughter said that it was my decision, but if there was anything that would bring some hope an open window, she felt that should be explored.

The support of one's friends and family is so important to keep us going.

Sorry I have gone on. I will be away for a week with treatment every day next week.

have a good weekend

regards

Chonette