belle

Thank you Marion and Patty. At this time, she has stents, not tubes. When they were put in we had hoped that she would have more time and that the internal draining would enable her to return to her group home… Unfortunately, that never came to be and now she is basically sleeping and vomitting in 15 minute intervals. What is so frustrating is that the hospice drs. feel that sedation is the way to go but she has had such terrible reactions to everything tried (including Lorazepam, ativan…) The dr really doesn’t want to put her on phenobarbitol because that will just put her in a deep deep sleep and it’s a last ditch measure. So for now we plod on taking turns caring for my poor sister. (Good thing that we are a large family with many of us rotating to help out.) Thank you again to all of you friends, Belle

Thank you to all of you who responded to my plaintive cry. Brenda, the reason that they are continuing to hydrate her is simply because that’s what they were doing until now. Making another decision to stop hydration is another very big step (which is under consideration) but we’ll see. The palliative care team will do whatever the patient and family wants which is a real comfort. I have only the best to say about our experience with the hospice care drs. and nurses. Once again, thank you and i’ll try to keep in touch. Belle

Thank you, Sara for your post. Up until this point, my sister was being cared for by the surgeons and drs. in Sloan Kettering. As I had posted earlier, my sister is a mildly mentally handicapped adult who was living in a group home and held down a job (easy one) until her diagnosis in January. After an unsuccessful resectioning (mets to liver and abdomen), they put drains and then stents in, did one radiation treatment that didn’t do much and that was really it. Because she is mentally handicapped, chemo was not an option. She can communicate and when she is in pain she tells us, but more often than not it’s the dizziness and the terrible vomitting and nausea that plagues her. I took Jeff’s lead and she’s on Xanax now for the anxiety and I’m hoping she’ll be a bit better. Yes, my parents (who are caring for her) are in constant touch with the hospice doctors and caregivers and they plan to care for her at home. (She was give hydration today, so it was a better day.) I hope I’ve answered some questions about her case because now unfortunately it’s more about palliative care than oncology. Thanks to all.

Jeff, thanks for answering. It’s so interesting, because as I’ve told you, my sister is capable of communicating (she had a job till she got sick!!). From time to time, she complains of a pain in her abdomen but that’s really it for actual pain. Is cc associated with severe pain? I’m shocked to read it! If you’d have asked me, I’d have said, thank G-d at least she isn’t in horrible pain. (not that dizziness and vomitting isn’t painful) but not the type of pain associated with different cancers. I will speak to my parents immediately. YOu have definitely added an additional angle to the whole situation. Thanks and I’ll keep you posted.

Jeff, thank you for taking the time to answer my post. She is getting weaker and weaker. I hadn’t seen my sister in 4 weeks and her deterioration was incredible. To answer some of the questions, I should begin with the fact that my sister is a special needs adult who was living in a group home with other highly functional yet mentally retarded adults until January, when she was diagnosed.

It is therefore very difficult to “push” her to eat or go out or do anything, for that matter. She understands that she is sick, but not that it is terminal. She is on antibiotics to keep her stents infection free, as well the line they put in to take blood etc. She does take anti-nausea drugs when she is having an off day. That is the interesting thing. One day she can be so ill and dizzy and weak that she literally can’t pick her head off the pillow. Other days are somewhat better and she’ll go out a bit.

My parents (who are not so young either) are caring for her and we as siblings (large family) are helping by rotating and doing what we can. We just wish we knew…so what’s next. Thank you again for your listening eyes, Belle.