CancerCompass message board discussion started by Carin4LittleSis on 10/9/2007 http://www.cancercompass.com/message-board/message/all,16910,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My little sister who is 24, a recent college grad and unmarried, has been diagnosed with Stage 4 Small Cell Endometrial Cancer. She was diagnosed Jan of this year. I'll spare ya all the details of the past treatments and such (I'm sure you know much of the drill) but our mom has been a problem since day 1. She doesn't want to talk about cancer. She doesn't want my sister to talk about cancer. She leaves the room when it is discussed. BUT she insists on making all the decisions about my sister's care without knowing all the info. She has placed every ounce of her trust in one doctor and does whatever this doctor says even if it the only reason for it is for the convenience of the doctor and even if it makes life harder for my sister. I can't tell you how angry and upset I am that my mom runs rougshod over my sister's wishes. My sis is too weak and vulnerable to stand up for herself and if I try to do it for her mom just throws the "she's not your daughter" stuff in my face. Sis does not want mom to be upset or anyone to fight so she goes along with whatever mom wants even if she just  got through telling me privately its not at all what she wants.  The doctor has missed cancer that was present. She insists on everything being done at her hospital, an hour's drive away, eventhough such things could be done more conveniently here at our local hospital. Never has the doctor uttered the words "we'll do whatever is best and most convenient for the patient". They do what is most convenient and easiest for THEM. No consideration for what would make my sis more comfortable or happier. But mom insists that this doc is going to save her "baby" and  if Doc says jump mom says "Out which window?" Anyone here have any ideas or insight into how to help mom allow my sis to take more control of her care? Any ideas on how to get my mom to see that she may not be the most objective person to be making decisions for her grown daughter, given especially that she refuses to discuss cancer or my sis's case or the details of what is going on? I have reached my level of frustration and frankly if I didn't love my sister so much I'd say screw it and never talk to my mom again. Her behavior in this has utterly disappointed me. Carin4LittleSis Tue, 09 Oct 2007 00:00:00 GMT "Anyone here have any ideas or insight into how to help mom allow my sis to take more control of her care? Any ideas on how to get my mom to see that she may not be the most objective person to be making decisions for her grown daughter, given especially that she refuses to discuss cancer or my sis's case or the details of what is going on? I have reached my level of frustration and frankly if I didn't love my sister so much I'd say screw it and never talk to my mom again. Her behavior in this has utterly disappointed me." Your little sister is your Mom's baby and there is a bond between a mother and her child that no other bond can equal. Your mom is experiencing a pain no mother would want to experience, that is: seeing a child she loves very much battling with a disease that can kill. Her not listening to you when your sis' cancer is discussed may be a way of shielding herself, but apparently she knows your sister's case well because she is the one who gets to talk to the doc when she brings her to the hospital. I would listen to her and understand what she is and is not saying. Ask questions and allow her to express what is really in her heart and make her feel that she is loved, understood and accepted. Perhaps, if she does not sense any antagonism - she will listen to other opinions. Life is too short to quarrel with the person who loves us. Remember: "A soft answer turns away wrath" and " A merry heart does good like a medicine."     xyzabc Tue, 09 Oct 2007 00:00:00 GMT My mom does not listen to what the doctor has to say. I have been to the doc with my sister too. I ask the rough questions. I do the research. Mom misses half of what the doctor says. She tunes it out. When I arranged a second opinion for my sister before her hysterectomy (per my sister's request) my mom was so angry with me for arranging a second opinion (angry for a second opinion?) that she accused me of not caring if my sister lived. When we went to the second opinion (because my sister actually said she wanted to go) mom left half way through the appointment because she couldn't handle what the doctor was saying. She left my sister to deal with what this doctor was saying (I was of course there with her) because SHE couldn't handle it. But my sister had to listen to it. I have children. I know this is painful for my mom. But she doesn't want to know anything about my sister's cancer and relies completely on ONE doctor's opinion and plan of care and refuses to seek other opinions, and refuses to let anyone else help in the decision making process. Her attitude is "Do whatever the doc wants, just don't bother me with the details." That is NOT good care. I have been through this cancer thing before. My father in law was diagnosed just a month before my sister was diagnosed, with a glioblastoma. My husband's family got 5 different opinions throughout my FIL's care. He subsequently passed 6 months after diagnosis. I am not new to this process. The doctor that my FIL saw, incidentally in the same office as my sister is receiving care, was ALL FOR other opinions and doing whatever would make my FIL more comforable. The focus was the patient. It isn't in my sister's case. They actually fought us on getting a second opinion. And since they fouhgt it, my mom fought it.  Yes peace in the family is a good thing. And I have had to back off and bite my tongue MANY times. But today was the last straw. Liz was in the local hospital being treated for severe back pain that turned out to be matastasis of the spine. They were working to get her comfortable with oral meds and get her home and then she could follow up by appointment with her oncologist. That is what my sister wanted.. When her oncologist was informed of the new cancer she insisted my sis be transferred to her hospital, an hour away, to see their radiologist. OK, fine. except my sister HATES that hospital and wants to travel as little as possible due to her back pain. She expressed she wanted to stay close to home and wanted to eliminate as much as possible the car trips because they cause her so much pain. There is a very good hospital here and a pain center and cancer center here, 5-10 minutes from her house. The only reason she is seeing the doc 1 hour away is she is a GYN oncologist and the ones here are general oncologists. My sis could get everything done here and the docs here could consult with her GYN oncologist and she could go down for ocassional appt for check-ups. But her doc refuses to agree to that and my mom does whatever the doc says and my sis won't fight it. So yes, I can just sit back and hold up the peace sign and say nothing. I have been dealing with this for the last 9 months. So very little has been done with the best interest of my sister at heart. I have kept quiet quite a lot in the name of peace, but I have had my fill and I needed to vent. Carin4LittleSis Tue, 09 Oct 2007 00:00:00 GMT WOW!!! I think "a soft answer" is not effective in your mom's case. Maybe a third person can help? A family friend perhaps?I'm sorry about your sister's cancer Carlin. I am sorry that you also have to deal with a difficult mom on top of this. Now, I am a little angry at your mom.   xyzabc Tue, 09 Oct 2007 00:00:00 GMT Print out your last two posts and give them to your mother and tell her this is how I feel.  Tell her you don't want to fight about it but you feel like she's in some denial and the best thing is not being done for your sister and HER wishes are not being met. That's the only thing I can think of.  I'm sure she thinks she's doing what's best.  It's to bad your sister won't take control of her care. Good LUck! Snowmom60 Tue, 09 Oct 2007 00:00:00 GMT it sounds like your discussions should be with your sister, not your mom.  Your sister is an adult and is responsible for her own care.  She needs to wake up and get in the game.  Its up to her to stand up to your mom, not you.  If she allows others to dictate her care then there really isnt much you can do.  Dont let your sister ruin your relationship with your mom. Oncrx Tue, 09 Oct 2007 00:00:00 GMT Your sister is not a minor and the doctor should not be consulting with your mom without a written release from your sister.  Try to empower your sister to take control.  This could be a matter of life and death.  Has your sister always deferred to your mom, or is this the first time?  In any case, everyone needs an advocate, especially when they are sick and vulnerable.  She needs to be evaluated by a cancer specialist at a good cancer hospital.  This must be terrbile for you to witness this.  I'm sure that your mother is very frightened and that is why she wants to take contro.  But this may not be in your sister's best interest.  Is there anyone else that you can get involved.  Someone who your mom will listen to?  It sounds imperative that you try.  However, the ultimate decisions and control lie with your sister, not you or your mother.I wish you strength and courage.Donna Withgrace Tue, 09 Oct 2007 00:00:00 GMT I have been going through a very similar situation and the only thing that has helped is getting through to my mother (Which took seven months of hard work) is when she realized how we all really felt. The truth can be harsh but sometimes is the only way. If anyone knows a better solution, please do tell. Hope everything is ok and your sister is doing as well as possible.Take care and God bless.  xyz123 Thu, 14 Feb 2008 00:00:00 GMT Honey your mother is in denial in a big way.  Is there another family member who can take over your sister's care. That is what she needs but after all our sister will make her decisions. Can you talk with her and ask her if she wants a second opinion, a closer doc et. You must have a family conference and take charge.  Surgery is the best cure for this, if it has not spread, in fact it is the #1 cure. As a past oncology nurse we removed the uterus and that was it, patients lived 20-30 years and died natural deaths.  Sounds like your sister is getting chemo or something as she is not too filled with enerygy.  Do the best you can and take away the power your mother has. As the posts here say sometimes you have to be harsh to be kind....Life is not easy is it...Good luck. mmsOn 10/9/2007 Carin4LittleSis wrote:My little sister who is 24, a recent college grad and unmarried, has been diagnosed with Stage 4 Small Cell Endometrial Cancer. She was diagnosed Jan of this year. I'll spare ya all the details of the past treatments and such (I'm sure you know much of the drill) but our mom has been a problem since day 1. She doesn't want to talk about cancer. She doesn't want my sister to talk about cancer. She leaves the room when it is discussed. BUT she insists on making all the decisions about my sister's care without knowing all the info. She has placed every ounce of her trust in one doctor and does whatever this doctor says even if it the only reason for it is for the convenience of the doctor and even if it makes life harder for my sister. I can't tell you how angry and upset I am that my mom runs rougshod over my sister's wishes. My sis is too weak and vulnerable to stand up for herself and if I try to do it for her mom just throws the "she's not your daughter" stuff in my face. Sis does not want mom to be upset or anyone to fight so she goes along with whatever mom wants even if she just  got through telling me privately its not at all what she wants.  The doctor has missed cancer that was present. She insists on everything being done at her hospital, an hour's drive away, eventhough such things could be done more conveniently here at our local hospital. Never has the doctor uttered the words "we'll do whatever is best and most convenient for the patient". They do what is most convenient and easiest for THEM. No consideration for what would make my sis more comfortable or happier. But mom insists that this doc is going to save her "baby" and  if Doc says jump mom says "Out which window?" Anyone here have any ideas or insight into how to help mom allow my sis to take more control of her care? Any ideas on how to get my mom to see that she may not be the most objective person to be making decisions for her grown daughter, given especially that she refuses to discuss cancer or my sis's case or the details of what is going on? I have reached my level of frustration and frankly if I didn't love my sister so much I'd say screw it and never talk to my mom again. Her behavior in this has utterly disappointed me.   mmsurvivor Thu, 14 Feb 2008 00:00:00 GMT  On 10/9/2007 Oncrx wrote:it sounds like your discussions should be with your sister, not your mom.  Your sister is an adult and is responsible for her own care.  She needs to wake up and get in the game.  Its up to her to stand up to your mom, not you.  If she allows others to dictate her care then there really isnt much you can do.  Dont let your sister ruin your relationship with your mom.I think it's important to remember that her sister is also extremely sick and weak at this point. She is doing battle with cancer-she should not have to battle her mom or anyone else. If she feels anything like my dad then she can barely lift her head, much less "get in the game." GeorgesGirl Thu, 14 Feb 2008 00:00:00 GMT