I'm continuing to go to Boston for the cancer trial drug first week of Dec. The last cycle in Nov resulted in a 'no change' situation - there were no increase in number or size of cancer tumours but also no reduction in number or size either. It could be taken as an encouraging sign that things are not worse. Or it could be interpreted that the trial drug had stopped working.
The Boston trial only eliminates a participant if the cancer has progressed 2 months in a row - if the cancer tumours have grown in number or sizes. So that seems a while to wait for someone who's not sick enough to lie in bed all day, nor well enough to be able to even change a bedsheet by herself without having a breathing issue.
My mind is coherent enough to be super bored right now but my body is not well enough to resume 95% of what I used to do before my cancer diagnosis. It's a really frustrating place to be for a person who used to be very busy and like being useful. I don't know what my new role should be. I also cannot count on myself each day to be consistent - same energy/health level to deal with the kids or housework. Some days when the kids come home from school, I had the energy to deal with them. Some days I dread the sound of them coming home. How is this inconsistency good for the children? I also don't want them to have a heavy emotional reliant on me in case the cancer takes a turn for the worse quickly and unexpectedly.
I just want to be the old mom again. I can't right now. I don't know what my role is right now. I don't know what to do.............