Posted 4/27/2015 1:19 AM (GMT -6)
Testing123- thank you!!
The doc who discharged Paul with a bowel perforation told me to relax. I did. So did the one who said his heart was fine on his second hospital discharge. I did then too...
I was told nothing was on his recent scans showing the huge hernia....that there were no changes in his lungs, that nothing is in his neck and throat but by god there it is clear as day...
Should I go on?
I listened to them all before despite my gut saying something is very wrong and he nearly died. I won't do that again- this time I am going with my gut all the way baby.
Its so easy for you to say but if you were in the same boat you would be watching like a hawk. There is no doubt he would be long dead if not for my diligence up to this point. You have no idea what we have been up against starting from the very beginning. I have never ever encountered anything like this in all my life. You realize I had to ask three docs before one would even refer him to an oncologist?
We literally have to ask for things and plead at times..... Even now- Outside doc made recommendations that were ignored, his scans show stuff in his neck and throat that recommend a better look, and they ignored that too. The huge incisional hernia wasn't even mentioned, nor are the lymph nodes. The doc decided the lung nodules reappearing were always there, despite at least half dozen scans showing otherwise. Nobody would listen about hernia until the good surgeon returned- and it is bad, and I am sure getting worse. But surgery is major... not advised. No treatment until dental surgery we can't afford and Paul won't have until he can have replacements made- his pride and vanity isn't dulled.... He is very conscious of how much he has changed already. Oh how I could go on and on and on.
We had his cardiac doc slip and say they really wouldn't do much of anything regardless since he only had about 2 years at best to live late last summer. Probably has more to do with denials and delays than anything.
Will I relax? Sure I will and I do, did most of weekend actually. Do we have docs we trust? Some, not all- but are limited by a narrow network with regard to choices. Am I going to arm myself with every bit of information possible and leave no stone unturned? You bet your you know what I am. Am I going to voice my gut feelings from here on out? I have been and will continue, even if it has seemed to fall on deaf ears.
In the meantime I lay here writing this, looking for something that will help Paul as he lays here once again in the most unnatural contorted sleeping positions that can't possibly be comfortable awake, nevermind asleep. They say this is a sign of the end of life being near in hospice books as the last months of life approach and this worries me to no end. I just want him to be able to enjoy every day, to be able to go to California to see his nieces he hasn't seen in years (and some he never met yet!).
I want to be able to say I did everything I could while he was still here and I don't feel that given the above and all the catastrophes in his care so far that I feel responsible for by acquiescing, that I can't honestly say that now. I want him to have the best treatment there is.....
This can't be all there is, I just don't believe it.....