Does these side effects sound familiar to any one???please..

our story
Mom quit treatment in August because there was such a slim chance that it would help, and after two chemo regimens in two years she had had enough. Now we have hospice and her 24 hour morphine is 120-160 mg, depending on the day. She uses a walker but we watch her all the time anyway. Primary ovarian cancer with mets to lungs and bones, and it looks like every lymph node in her right leg is thoroughly invaded, very painful.

By hospice standards, any pain/discomfort level above a 5 (on a scale of one to 10) is unacceptable. Our daily goal is a 3-4, which we hit during several intervals during the day. Mom has increasing confusion and decreasing bowel control, which our hospice nurse thinks is due to metastatic activity in the brain.

I know this sounds bad, but Mom is pretty accepting of everything, has lots of visitors, and comes and goes out of her blue moods. I think you could do much better in terms of pain management if not through hospice, through a palliative care doc if you can find one.

Good luck, hon. It's a nightmare.

Been there, done that....
Jackie,

Starting in September my husband started staying in bed moreso. I use to take down the times he was up. Some days he would be up for a total of 5 hours and others only 1/2 hour during a 24 hour period. He was eating very little in the beginning of October, mainly oatmeal in the morning and 2 glucerna shakes for dinner. In the middle of October while in bed he got up (before I could get in there) to go to the bathroom and fell. I wasn't fast enough to catch him. I got him propped back up on the bed (we have a waterbed) and grabbed the urinal. As stubborned as he is he wanted to hold it and dropped it. Ended up all over the floor and he was still going. Noticed that he also had wet the bed and it needed to be changed. He had no strength to stand and was in tremendous pain. I ended up calling the hospice nurse for help getting him into the living room on a queen size blow up mattress. He refused a hospital bed. Once he was in the living room, he stopped eating (this was October 18th). He did still drink water through a straw but was having a hard time doing so. He was on 3 ml of liquid morphine every two hours and 10 mg (crushed up because he couldn't swallow pills anymore) of methadone every eight hours. Since that day I slept on the couch next to him. His last days he couldn't drink through a straw anymore, too weak, so I gave him his liquid through the morphine syringe. My husband never took chemo, only had radiation and that ended in June. I would have to move him when he would have to go pee. Never had a bowel movement. Actually last one was the beginning of October. A few days before he passed he was in need of a catheter because he lost control of his bladder and it was hard on me and him being in so much pain, to keep changing the sheets. The night before he passed he finally agreed to a hospital bed and wasn't in it much more than 15 hours.

Sorry to be so blunt but this was my experience. Cancer is a terrible thing and to watch a loved one go through what they do is very heartbreaking. I miss my husband terribly and I wish that this evil Cancer just didn't exist!!!!

I pray for you and your husband. You are right God is in control. I agree with Tina, time to get hospice in there if you don't already. My husband was on hospice since May and they were a big help!

~Kelly
wife of Mark Scoville RIP 11/14/11 NSCLC with mets

This is tough because you
This is tough because you dont want to over medicate either because then its like they are not even them anymore. My mother had a Palliative care doctor and a hospice team. My mother wanted to be as pain free as possible with awareness....what good is it to be pain free if you dont even know who you are? Palliative care doctors can do a great job managing a happy medium. God bless and good luck!