Not sure what I will end up titling this post. Not even sure if I am looking for answers, responses or encouragement, or to just get my feelings out in a place where I am pretty sure someone will understand even if I can't find the right words to express them.
As a caregiver I find myself in this place of helplessness and fear and yet at times I feel determined and hopeful as I read the stories you all share here.
Its been a rough week. DH has three more radiation treatments to go. They had to stop the xeloda because he was getting too sick and losing weight to fast. On the one hand I am glad he doesn't have the nausea to deal with but at the same time I am afraid of going without that extra treatment.
He has been having a lot of pain from the radiation...not just the razor blade bm's but terrible bloating, rectal spasms, hip and back pain. Even the narcotics aren't helping much. As his wife I just want to help and there is little I can do.
Then there is the fear that sets in as we near surgery, follow up scans, etc.
The tumor is low so we have now been referred to another surgeon in hopes of avoiding a permanent ostomy. While I have come to understand an ostomy is not the end of the world, emotionally, DH just isn't able to go there yet...it worries me, as does the flip side of possible complications of a reversal down the line. I pray that we are in good hands.
And of course the fear that I dare not entertain often...what if treatment doesn't work..we are fortunate to be currently dealing with stage 2 and I am so thankful because I know it could be a lot more difficult. But the unknown haunts me at times.
Few, if any people in my "real" life would really get any of this so I really don't talk about it much but I just feel like I need to get it out today. Its difficult to keep it all bottled up in my head.
I really hope and pray post radiation healing is quick and we get a few weeks of semi-normal to recoup and recharge before the next big battle we need to face with surgery. We both want to give our children a little bit of "normal" summer if we can and spend some quality time with them.
thanks for reading if you got this far.
My thoughts and prayers are with you all as well...I don't know where I would be without this place to come and hear from others who understand and are in the trenches or have been there themselves.