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.............
Children are more resilient than we often give them credit for. They will learn that mom has good days and bad days. They will grow in empathy and emotional maturity. I know that is not much comfort, though. Have you thought of writing them a little letter each day for them to read at bedtime? It's something that would not take as much energy as housework does, but it is a way of connecting with them on a very personal level. It would be for their eyes only, and something they could look forward to no matter what your energy level had been for the day.
ReplyDeleteI hope you find your way to a new role as you go through treatment. Wishing you the very best outcome. Your outlook and positivity is inspiring, not just for us who see you from a distance but especially for your family and your children. Hugs
Thanks Jenny! The daily little letters are such a great idea! Its like me sharing my inner thoughts with my kids on a daily basis. Thanks for the suggestion!
ReplyDeleteI hope it helps :)
DeleteI wish I could offer something helpful. I like what Jenny O posted. I think your children understand what is happening with their mom. Try to stay positive as it is good for the mind and soul. I know how difficult that can be when someone is having health issues. Cyber hug from me.
ReplyDelete