CancerCompass message board discussion started by Myfriendhope on 8/2/2007 http://www.cancercompass.com/message-board/message/all,14955,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello. Anyone that can give advice/insite, PLEASE DO!!!! My dear friend   (52) was Dx with small cell lung in Jan. She is a live wire. Her husband, who has no family, etc is besides himself. She has been through everything, now mets to lung, brain, etc. Chemo stopped. She started hallucinating & turned a funny walnut color 10 days ago, was hospitalized. Drove the RN's NUTS with her antics. But they were wonderful; despite having to put her in straight jacket (which she figured out how to get out of), many escape attempts (they put baby bracelet on her). She did not sleep or eat for 6 days. A GREAT Hospice pain doc took over & said she was on to many meds & reduced them. She finally became lucid & was discharged (yesterday). Here's the problem: husband has come to terms with it all and is a prince and knows that there is not much time left. Hospice came today for "the talk"- will stop in to check every week. Also brought meds & O2 tanks. My friend sounds great - 1st day home. In fact, she feels so good that she is talking about going on all of these trips, like everything is fine and the years to come. Her husband can barely hold back the tears because he knows. Is this behavior "normal"? They are my best friends & I am there every step of the way (& know how to use the computer). He is afraid to travel but dosen't know what to say or do. What happens next; what can we expect as far as cognitive progression? He is a mess. Thank you for your responses-this site is wonderful. Myfriendhope Thu, 02 Aug 2007 00:00:00 GMT First of all, I wish you luck with your friends.  The next few weeks will be tough for you all.  I can't speak to the cognitive progression of your friend exactly, but I can let you know how my dad progressed.  He had lung cancer that mets to the liver and brain.  He did not experience the problems with the medicine that you all have had, so I can only imagine how scary and confusing that must have been.  In the last couple of weeks as the cancer had moved into the brain, he would seem more confused and had trouble connecting thoughts.  He confused names, would lose his train of thought, etc.  That was about it.  However, in the very last days (within 2-3 of him passing) he seemed to "be in another place and time".  He was sleeping mostly but would talk to people that weren't there and talk about activities that he hadn't done since he was a kid.  A booklet that hospice gave us describes this as bridging the gap between the living world and the other side.  However, it sounds as though your friend is not at  this stage yet.  When my dad was lucid and alert, he stated that he was ok with dying .  He knew that he could not win his battle and made peace with it.  With your friend talking  of future plans, it is my guess that she has not made peace with being in the end stages.  She is not ready to go. I would recommend asking  hospice about talking with a counselor for you, your friend's husband, and her.  They should be able to provide guidance and help with this most difficult time.    God bless you all.  Eric.    Enich38 Sun, 05 Aug 2007 00:00:00 GMT  On 8/5/2007 Enich38 wrote:First of all, I wish you luck with your friends.  The next few weeks will be tough for you all.  I can't speak to the cognitive progression of your friend exactly, but I can let you know how my dad progressed.  He had lung cancer that mets to the liver and brain.  He did not experience the problems with the medicine that you all have had, so I can only imagine how scary and confusing that must have been.  In the last couple of weeks as the cancer had moved into the brain, he would seem more confused and had trouble connecting thoughts.  He confused names, would lose his train of thought, etc.  That was about it.  However, in the very last days (within 2-3 of him passing) he seemed to "be in another place and time".  He was sleeping mostly but would talk to people that weren't there and talk about activities that he hadn't done since he was a kid.  A booklet that hospice gave us describes this as bridging the gap between the living world and the other side.  However, it sounds as though your friend is not at  this stage yet.  When my dad was lucid and alert, he stated that he was ok with dying .  He knew that he could not win his battle and made peace with it.  With your friend talking  of future plans, it is my guess that she has not made peace with being in the end stages.  She is not ready to go. I would recommend asking  hospice about talking with a counselor for you, your friend's husband, and her.  They should be able to provide guidance and help with this most difficult time.    God bless you all.  Eric.   Hi Eric,Thank you for your kind words and the advise. I will talk to the Hospice people.  Goid Bless you!Prudence Myfriendhope Mon, 06 Aug 2007 00:00:00 GMT Hello,I feel your pain.  I would let them plan for the future, when she is ready, she will deal with the cancer and the end.  Let her and husband dream a trip.  It will let them feel together, and give her a dream - this will help her during the cross over - a dream is a dream.  As long as she is happy, and planning, her husband will be happy, and remember her smile when she was planning a trip.I did this with my Sister, and do not regret a minute of our planning stage..Good luck, and smile when you can, it helps the pain.. reama Thu, 09 Aug 2007 00:00:00 GMT We are in the seventh month of hospice end/time care for my mother.  When they first came on board, Mom was so thin, frail and weak that they estimated that we had about a month left.  They also gave us a book and sheets of paper outlining all sorts of signs and symptoms to chart her progression.Everything they gave us turned out to be wrong, and basically excaberated the roller coaster ride we were already on.  We went through a long, arduous grieving process while she seemed to decline.  She presented with many of the symptoms they warned us to expect.  There were four distinct occasions where myself and several of the caregivers felt that death was imminent.Yet today Mom has stabilized, is doing "well" (although she continues to stay bed-bound and remain frail and thin), she's eating more now and has shown marked improvement in a number of areas.  None of which hospice had predicted.  Just as we went through the whole cliff-hanging grieving process while we weathered every sign and awaited the end that seemed so near, now we have to re-align our thinking to plan for a possible long haul.  Every end-time sign of "significance" has come and gone, and while I understand the need to know what to expect - (I was there - believe me!), I can also tell you from this other side that sometimes knowing what to expect can make things more torturous.  You can't really prepare, and if signs come and go like they have with my Mom, it will only increase your level of distress.  Things that seem significant may turn out to mean nothing - that is a lesson we have certainly learned, and I would encourage you to throw out any hospice checklists or books you may have, and learn to take it one day, one hurdle at a time.It's taken seven long months to reach this conclusion, but we are alot more well-adjusted and at peace for it.  I'm praying the same for all of you as well.Ken      On 8/2/2007 Myfriendhope wrote:Hello. Anyone that can give advice/insite, PLEASE DO!!!! My dear friend   (52) was Dx with small cell lung in Jan. She is a live wire. Her husband, who has no family, etc is besides himself. She has been through everything, now mets to lung, brain, etc. Chemo stopped. She started hallucinating & turned a funny walnut color 10 days ago, was hospitalized. Drove the RN's NUTS with her antics. But they were wonderful; despite having to put her in straight jacket (which she figured out how to get out of), many escape attempts (they put baby bracelet on her). She did not sleep or eat for 6 days. A GREAT Hospice pain doc took over & said she was on to many meds & reduced them. She finally became lucid & was discharged (yesterday). Here's the problem: husband has come to terms with it all and is a prince and knows that there is not much time left. Hospice came today for "the talk"- will stop in to check every week. Also brought meds & O2 tanks. My friend sounds great - 1st day home. In fact, she feels so good that she is talking about going on all of these trips, like everything is fine and the years to come. Her husband can barely hold back the tears because he knows. Is this behavior "normal"? They are my best friends & I am there every step of the way (& know how to use the computer). He is afraid to travel but dosen't know what to say or do. What happens next; what can we expect as far as cognitive progression? He is a mess. Thank you for your responses-this site is wonderful.  cancercompass7 Mon, 13 Aug 2007 00:00:00 GMT