I have written before so some of you may already be familiar with this...
My Grandma, 78, hx of mod - servere COPD, CHF, IDDM has been recently dx with a lung tumor and SVCS. She agreed to radiation but is refusing chemo. She has been a DNR for years, much more concerned about quality vs quantity and is "ready to go" (her words) - we support her totally. She says she can take or leave the radiation... it doesn't bother her and it did help with the symptoms and she understands that she can quit at any time (she only has 5 tx left).
Her oncologist is pretty upset that she does not want the chemo (she tried it and it wiped her out and she vomited for days afterwards) and keeps bringing it up. Grandma is still with it, but doesn't like him and has trouble speaking her mind when talking with him... he thinks she is giving up. At the same time he has told us that absolute best case scenario is that she would have a yr left, that there is no way to cure her and that the effects of the radiation will only have an effect on the tumor for about 3-4 months after tx's are finished. Chemo would only maybe buy another couple of months.
I have been talking to a friend at work who is a MSN and works in the chemo clinic. He mentioned getting her into hospice now instead of later, for the sake of pt advocacy and also so that they have a chance to really do their stuff instead of coming in at the end trying to catch up. Giving us a chance to build a relationship with the people who are going to help us through this phase and also get to really know grandma. He also mention that she should not have her PICC line removed (unless DVT or infection) as she is really going to have issues with air hunger and possibly pain (though not yet) - and that IV morphine is the way to go. The oncologist wanted the line out... said when she gets ready (worse) they can put a mediport in.
She had an apointment with her pulmonologist today.... Grandma has been seeing her for years and knows Grandma's feelings, and we were hoping that she would help advocate for us. I was unable to attend this appt, told mom not to let them pull the line. The Dr told mom about the risks and not understanding the whole complex picture Grandma let them pull the line. She states that Grandma is a long way off from needing hospice and that they will really control your life with limits and is against us going that route. (We totally thought she would be in our corner)
I am really starting to get emotional about all this as I do not want my Grandma to suffer. I remember working on the oncology floor my first year out of school - absolutely LOVED it and if I wasn't moving to Africa I would most likely be working in hospice. But I know that value and the blessing of having the whole family in agreement over end of life issues and I don't want it to get messed up now with medical bureaucracy....
While grandma is holding her own - she is getting weaker and her short term memory is starting to go, and she really isn't paying that much attention to what anyone is telling her - especially the Dr's. I have a feeling that becuase she doesn't want to fight death that she most likely will go sooner more than later. (She really missed Grandpa and can't wait to see him).
Anyway... I tried to edit this as much as I could, if you have any questions that would help fill in the gaps I would be happy to answer them and any advice or insight would be much appreciated -
Thanks
Lori
BTW - my clinical instructor while I worked on oncology suggested we read "Final Gifts" - I ended up buying the book years ago - it is very dog-eared and worn form all the times I have lendt it out - my Mom is now reading it and is really appreciating what it has to say.
