Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 , First,let me send a hug your way cuz you surely need it. You have a right to feel frustrated,I often feel this way when my husband's family acts like he just has a minor ailment that will cure itself in a few days.quite frankly, there are times when I'd like to shake them, but it wouldn't do any good. What I really do recommend is talking with a social worker at the hospital or center where your mom is being treated.Ask for a family consultation.The soc. worker will set it up and moderate the meeting to give all of your family members and the docs(onc,GP,surgeon)a chance to sit down together and discuss what's on your minds. You can do this with or without your mom present.You really need to have all the docs caring for her to be in the same ballpark or they'll be working against each other and that won't help anyone!! Also,remember: " as long as there is breath, there is hope " . While your mom's long-term prognosis may not be great,she is still with you.Make the most of every moment you have together.The phrase I tell my children is:to make sure the memories we're making are the ones we want to keep " .If you read thru some of the archives on this site you will find many real life stories of inspiration,people who've beat the odds and done far better than anyone ever expected.Don't let anyone take away your hope!Miracles do happen every day! Hugs & prayers, > First, I'd like to say thank you to the people who responded to my > questions in my " don't know what to expect " post. I really > appreciate the information you provided, and the support you've > given me. > > I have another problem with my mom's diagnosis/prognosis > (stage 4 CC, w/ mets to ovary, liver, diaphragm, peritoneal > carcinomatosis and ascites—colon resection 1/14, no further > treatment yet because of post-op complications including > pulmonary embolism and wound dehissence that required > second surgery) and the information she's NOT getting. > > She has not been told by any doctor that her illness is terminal > and that any treatment is not intended to be curative, but rather > palliative. The surgeon told my dad, sister and me this, but then > he never told Mom. He never even had a conversation with her > about what he did in surgery! > > Then, the onc on Friday tells her he plans to treat her > " agressively " with 5FU/LV/oxaliplatin, but he doesn't tell her what > he does or does not expect to accomplish with the treatment. > She asked him, " So you think you can help me? " and he replied, > " I wouldn't be suggesting this if I didn't think I could help you. " I > witnessed this interchange, totally speechless. Based on the > information provided to me and the other family members by the > surgeon (and further discussions I've had individually with our > family GP) I would say this interchange with the onc was patently > misleading. > > My question is this: doesn't a patient have a RIGHT to know ALL > the information about her diagnosis/prognosis, before deciding > on the course of treatment? Isn't that at the very heart of what > " informed consent " means?! My mom has not asked to have > information withheld from her. Quite the contrary; she made me > promise NOT to withhold information from her. But my dad > doesn't think she should be told anything because it would > make her " lose the will to live " and just make her depressed. > (The naked truth is HE can't deal with any of this and would > rather pretend it isn't happening.) I would initiate a frank > discussion with Mom on my own, but isn't this something a > doctor should do, not her child? I'm between a rock and a hard > place. > > My mom (who turned 68 while in the hospital) was otherwise > pretty healthy but is now very, very debilitated. She has grown > weaker rather than stronger since discharge from the hospital > on 2/7. Now she can no longer sit up, even to eat a meal at the > table. She sits in a recliner all day, sleeping a lot. She is > extremely exhausted from even the most minor physical exertion > (like walking to the bathroom and back--with assistance, > because she can't do it alone.) Her appetite is waning. She has > abdominal cramps, which are growing worse each day. They > started about a week ago. She thinks it's " gas, " but it's probably > from the unresectable tumors dispersed throughout her > abdomen. Periodic bouts of nausea, which subsides. (Though > Sat-urday she did vomit for the first time post-hospital.) > > Our GP told me this morning he thinks " chemo will likely hasten > her demise rather than prolong her life. " He thinks she is too > weak to even consider 5FU/LV oxaliplatin treatments. He told me > it would be appropriate to call hospice now. That idea freaked my > dad and sister out. (Let's pretend all's well. Let's not " give up. " ) > > I don't know what to do. I feel the need to be honest with my > mom (I promised her that, after all.) And I think it's in her best > interests to have information before making decisions like what > chemo regimen to use. I also think that we should get all the > professional help we can to help keep her pain free and > comfortable. But because the doctors aren't talking to her > honestly (which my father may have had a hand in, come to think > of it) it sets me up to be the " bad guy " by telling her what she has > the right and a need to know. > > Anybody else have similar experiences? Any advice? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 Wow, that's a heavy load. Have you and your family considered hospice. Does she have abdominal cavity cancer? First,no reason not to be pain free. Second,does she have a living will, is our dad her health surrogate? You have to consider these points first. Yes I think you are right about owing her the truth,and your dad is fooling no one if that is his objective,it's proably very hard for him at this stage. God bless you all,don't wait to long,hugs and prayers Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 Wow, that's a heavy load. Have you and your family considered hospice. Does she have abdominal cavity cancer? First,no reason not to be pain free. Second,does she have a living will, is our dad her health surrogate? You have to consider these points first. Yes I think you are right about owing her the truth,and your dad is fooling no one if that is his objective,it's proably very hard for him at this stage. God bless you all,don't wait to long,hugs and prayers Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 > I have another problem with my mom's diagnosis/prognosis > (stage 4 CC, w/ mets to ovary, liver, diaphragm, peritoneal > carcinomatosis and ascites—colon resection 1/14, no further > treatment yet because of post-op complications including > pulmonary embolism and wound dehissence that required > second surgery) and the information she's NOT getting. > > She has not been told by any doctor that her illness is terminal > and that any treatment is not intended to be curative, but rather > palliative. The surgeon told my dad, sister and me this, but then > he never told Mom. He never even had a conversation with her > about what he did in surgery! > I'll offer my opinion on this, for what it's worth. My family had a similar experience when my mom was in the hospital. Some doctors would come in and start talking to the group of us and leave her out of the conversation. We fought this not so subtly by saying " well, I don't know. What do you think, mom? " I think the doctors do that because the family ultimately will have medical power of attorney at some point if a loved one becomes mentally incapacitated. Also, the family members are more coherent and ask better questions; therefore, they will dominate a conversation. I don't agree with leaving the patient out of the loop at all. It's their body, their life and they will ultimately pay the price or win the prize from the decisions made. My mom elected to get hospice without treatment. I had to respect that no matter how much I wanted to change her mind. She had seen many sick people before and knew what she was up against. If my mom was receiving this kind of treatment, I'd tell the doctors to spill it or I'd spill it for them and make them look like a jackass. If they didn't level with her, I'd go straight to her and tell her the doctors weren't levelling with her and put them on the spot. I'm sure they have a reason for doing this but I think honesty is better. That way, nobody has any additional guilt to deal with if the decisions made backfire. Again, this is my opinion. I'm not in your shoes so I don't know the full story and I'm reacting with my experience in mind. I do hope things will work out for the best. It's a very trying time when a loved one is in the hospital and having problems. It's very hard to have hope when everything looks bleak but things can change quickly. Learn all you can and spread the knowledge around so you and your family can know your options. Miracles happen, Cliff H. (aka, the other Cliff) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 - It is pretty usual to talk with the oncology nurse about problems rather than the doc, but I am horribly upset for you that it took a day for anyone to return your call, and that did not include a request for her to come in so that he could see what she looked like for himself and give her some fluids. As I mentioned in my e-mail and others have commented also, dehydration can be very serious and happen quickly. Dehydration can make the contents of the intestine get so dry that a partial obstruction becomes worse. It can also make cramping worse. I would be inclined to take her to the ER, but be prepared that some ER docs when they hear what the underlying problem is, unlike the medical oncologists, seem to think there is nothing to be done. When I have gone in I have let my oncologist know so that he can talk to them. I am not certain if this would work in your situation though. My prayers that your mom get some relief. Kris > > > > Quote Link to comment Share on other sites More sharing options...
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