It has been over a month since my mom left the hospital with only " days or few weeks left" to live. It certainly has not been easy but we have been blessed with her presence still here with us.
I was reading the other day in this forum how little we all know about those last weeks of life and how difficult is to find people that you can relate in this phase since you don't want to discourage any one who is still on treatment. But If you would like to follow, I will try to share with you as my time and energy permit. Perhaps I can help someone who is struggling walking a similar path. I must say thou that many of her symptoms are unlikely to happen to many of you since the most affected part is not her liver but her brain.
This last site has been the most challenging for our houspice nurses to deal with. They say that since it effects are so unpredictable and any part of the body can be affected it is difficult to foresee what will be next.
My mom is not walking since WBRT and has lost her ability to communicate since then. She has had something called aphasia palalia where she gets stuck on a word and repeats is over and over for about 8 minutes straight. She gets very agitated and tired. She gets anxious and desperate. We do too! The fact that she is not able to communicate diminishes our ability to give her the best care. We don't know where her pain is, is she is uncomfortable on the bed, if she needs to use the restroom, or wants to drink. We are in the guessing game most of the day when she moans. This breaks my heart into pieces!
Another difficult thing has been to find the right balance between her pain meds and her ability to be lucid and try to communicate at a certain level. Or the right balance between the pain meds and the horrible constipation they cause. she went constipated for about 5 days and it was awful! We are now in max doses of laxatives after we figured what was the right amount of laxativeS and medication for her.
Besides the medication and all the daily care bathing, changing sheets, making shakes and moving her around her bed and the bathroom, there is the emotional Side. Fist I'm glad she is home and not in the hospital. We have been able to spent time with family and friends without restriction. She feels comfortable most of the time and all
this is a blessing from God. Our friends have brought us dinner every day for the last month! There are so many good people around. I can't complain, I just wished this will make me feel this process is easier. Sometimes I feel I'm ready to let her go, some other times I think I'm not. Like today... But I miss her so much already..
Mom 62 dx IV - 10/13 multiple liver mets
Folfox + Avastin 12 cycles 06/14- tumors dead/ shrinkage!
5fu+ Avastin 2 rounds 08/14 - 09/14 - one single tumor growth
10/14 HAI pump- Tumors Shrinking
03/15 brain surgery 1 met SRS
11/15 brain scan clear after 2nd SRS. Liver mets shirnking
02/16 5 new brain mets. Liver growth