So went for the results of my scan....(what will they say? will it be good news/bad?, how will I feel this time?), the tumour in the lung has grown (small amount - but great in terms of my ability to breath!!), and somehow they say that the disease is STABLE!!! ( that does not make sense if they say it has grown), and in the next breath discuss the possibility of me going on final treatment Yondelis (trabectulin chemo); so they seem to confuse me as to whether it is stable if it is growing!!! So the oncologist at Leicester is changing jobs and seems rather disinterested in patients and there problems. When we discussed the breathing issues - well there is nothing further that I can do / you may end up with another problem next month (so what if I do!!! It is all about obtaining a `quality`of life !!). I want to have minimum pain / breathlessness and to try to live with this cancer "So please help me!!". Thankfully my GP and Macmillan Nurse are great and support my views on `Living with CANCER`. So the Morphine has been subscribed....apparently good for breathlessness! and the lactose for constipation (oh such joy!!): and I am medicated and going forward,even managed wine with friends tonight (late night had by all!!! - thanks!!).
Have moved forward with the help of the local hospice and GP team - might not be able to talk much to you kind people as I do not want to upset/burden anyone. We all have problems and I have those day to day as well as the C word - so do not feel as though it is difficult to talk about your problems or happiness as I want to share me life with people.
Love to you all
Kathryn X
Well stable is good , very good, but as you say why start Yondelis now when you are not progressive? I worry if your Leicester doctors are losing the plot, my doctor, David Peake in Birmingham is very good, you could still be treated in Leicester I think but see him for the big decisions.
ReplyDeleteNEVER worry about talking to the hospice nurses that is what they are there for and they are brilliant at it.
Anyway for both of us its onward and upward, living a fantastic life with cancer!
Jean x