What to expect?
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Thanks to all of you. So far, our hospice has been wonderful. In particular, his case manager who has already changed her schedule a couple of times to accommodate our issues.
You are all wonderful.
Will keep you posted.I guess I just work with such a great group with our Hospice that I could not imagine anyone having a bad time with it…..I shouldn’t think that way since I know healthcare runs the full gamut for everything. I wish that everyone could have the group that I work with. As with everything in health care ask questions and if you are not comfortable with the answers or how things are going, keep asking questions and looking in different areas. And definitely this is the best place to ask those questions….those that have gone before.
KrisV
I greatly admire Hospice and its staff. It provides invaluable support to the patients and family members and virtually has changed end stage patient care. However; we have witnessed numerous times discrepancies within the Hospice chapter personnel in re: to experience with the end of life issues. Teddy (Lainy’s husband) in particular suffered unnecessarily something, that could and should have been avoided. We, as the foundation members, want to make absolutely sure that each and everyone tended to by Hospice is receiving the most up to date available, medical intervention possible. Therefore, I agree with you kvolland, first and foremost reach out to hospice but, also double-check with those on this board that have first-hand experience.
End of life issues pose a difficult situation for us. We want to shield those newly diagnosed and treated successfully to not be exposed to the darker side of this cancer. However; in order to support each and everyone equally, some things need to be discussed. We owe it to the patient community.
Hugs,
MarionJust want to clarify that the list I send out is almost exactly like the Hospice list but some people feel they want to talk to someone who has been through it. Hospice is terrific but some have said they sugar coat things and just want to know what someone else has walked through. Hospice also has a booklet on what happens at the end. Either way works.
Cristerry -Talk to you hospice nurses too. If they are anything like the wonderful ladies that I work with they are always just a phone call away. If anything changes or you think something just doesn’t seem right, call and have them make a visit. And we are always here too.
KrisvV
Christerry….my heart is with you in this precious time. It might help to discuss the End of Life issues with the Hospice personnel also (once you have received it from Lainy.) Generally, symptoms appear slowly hence, it will allow for immediate patient support.
Stay stong, dear Christerry and know that tons of love is heading your way.
Hugs,
MarionDear Christerry, I so understand what you are going through. I have a list of the 10 signs to look for and while everyone is different Teddy followed them pretty close. If you would like me to send them to you just let me know and I can email them through the Board here. I believe your husband wanted everything stopped and wanted to go home because he knew it was time to go home and prepare. Nobody knows when, as it’s up to the highest authority of all, but I believe there is something in us guiding us to pick our own time. Use this time to talk, talk, talk and yes laugh. Teddy would tell everyone we were on our Honeymoon! Be very strong and let me know if you would like the list. You are not alone through this.
Hello,all.
My husband was diagnosed last July (2012) with intrahepatic cholangiocarcinoma.
After trying to unsuccessfully remove the tumor in the biliary, Chemo gem/cis and then rounds of two other chemos plus 5-fu take home pump for 48 hours.
Radioembolization thru the femoral artery to both sides of the liver. One side in May the other in June.His last chemo was August 8 at which time they decided to stop chemo for awhile. The jaundice returned and on August 21 it was back to interventional radiology where they discovered the tumor was blocking another part of the biliary. So, they put a tube through some other part of the liver and he has an outside drain with a bag. (This is how it all started only at one point he had as many as 3 bags with drains.) He was admitted to the hospital that same day for 3 days. Then, a week at a rehab nursing home for physical therapy as he was not able to walk, dress, or feed himself. He resisted the therapy for a week after which I brought him home. Once I made the decision to bring him home, a weight was lifted so I knew it was the right thing.
We now have hospice coming 3 times a week. The first couple of days were really hard with him having a hard time with his bowels.
He is not eating. He is drinking fresh oj in the morning and he likes soda during the day, although not enough liquids.
He sleeps almost all day. Yesterday he slept all day and all night.
Anyone have any ideas what I should expect?
Thank you for listening. This has been a long, hard journey – mostly for my husband.
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