Guest guest Posted January 18, 2003 Report Share Posted January 18, 2003 , I hope also that this is just a misdiagnosis, but if not, it is very correctable. Please, do NOT let what that Dr. said discourage you. It is a very emotional rollercoaster in the beginning. We did not know until our son was born that he had clubfoot. We have two local orthopedic surgeons. The first one we saw told us we were " lucky to have him " because where he did his internship he worked with clubfoot. He told us he would put our son in casts for one year and then we would see how many surgeries he would need. When he manipulated his foot, screamed, and that Dr. never looked at anything but his foot. We saw the second Dr. when he was one week old. (He wasn't in casts yet because the 1st Dr. said he didn't begin casting until 2 weeks of age ((I now wonder if this was due to his busy scedule or his need to do some research)). In the meantime we had been searching the internet and had found out about Ponseti and had applied to a Shriner's Hospital. The 2nd Dr. told us we needed to cast him that day that we were not doing our child any favors. I told him I wish I had known before he was born about his CF so I could have been prepared and had all my research done. He said, " What do you mean known before? " And I said that they would have found it by ultrasond. And he proceeded to tell me that you cannot find out by ultrasound. I disagreed with him because of what I had read on the net. But he stood his ground saying there was no way to know. He was at the time carrying at least 50 cases of CF. He did not cast him that day. It concerned me that he didn't even know you could find out by ultrasound. So as I said don't let what one Dr. says influence your decision greatly. He told us that would be in casts for 6 months and then multiple surgeries on both feet. His feet were classified as moderate to severe. We live in Madisonville, KY (about 2 hours from you). We see Dr. Dobbs in St. Louis, MO. I cannot say enough wonderful things about him. He is at Shriner's Hospital and also has his own office. was casted from 2 1/2 weeks old, until he went into the DBB at 10 weeks old. He is now part-time in the DBB (12-14 hrs/day) and doing great. Walking, no, running all over the place! He NEVER cries with Dr. Dobbs. And if I do see babies that cry, you also see Dr. Dobbs picking them up " making his peace with them " . It does seem so very overwhelming in the beginning, but just be glad you are able to gather all this information now. Search the net for all the clubfoot pages you can find and read peoples stories and look at the pictures. That was a great help for me. Good Luck to you and if I can be of any assistance, please don't hesitate to contact me. I could even talk with your wife by phone if that would be helpful. Pam and (8-12-01) > Hello everyone! I've been reading this message board for the last > week or so. I thought it was time to introduce myself and our story. > > My wife is currently 34 weeks pregnant. We are expecting a boy! At > the 20 week ultrasound, we were notified that bilateral clubfeet were > suspected. We have had several other ultrasounds since that time and > each has confirmed the diagnosis, although my wife and I have a > hard time seeing it in the ultrasound ourselves. We can see the > bones of the feet and they look " normal " . > > While we continue to pray that this is a misdiagnosis, I am trying to > get prepared and informed for immediate treatment following birth. I > sent an email to Dr. Ponseti, which was answered by his secretary as > he was on vacation. We live in Tennessee (lin) and have found > no local doctors practicing the Ponseti method. We were directed to > Drs. Busch and sey in Atlanta. I emailed Dr. Busch and was > referred to the Vanderbilt Pediatric Orthopedic group. We met with > Dr. Mencio last week to discuss his philosophy on treatment. I am > very thankful for that consultation, as he mentions that surgery is > required for 80-90% of his patients. He begins treatment with serial > casting, below the knee for 3 months. Surgery follows at 6 months. > This was very disheartening because he added that he didn't believe > in the Ponseti technique, which placed a grain of doubt in our > minds. This is especially upsetting as we have great respect for > those doctors. I am sure that he is a great doctor, but I would > prefer to give non-surgical treatment a chance. > > All of the information that I have seen indicate that the Ponseti > method has a very high success rate, without surgery and other > complications. I am leaning toward this treatment because I have > seen very little negative comments, and rarely a negative outcome. > If for some reason surgery should be necessary, our child would still > be under 6-8 months old and I would know that I gave him the best > shot at treatment without surgery. > > We are located halfway between Louiville KY and Atlanta. If anyone > knows of doctors, other than Busch and sey, in these locations, > please let me know. We are searching for options. Of course, our > first line of defense is praying that the ultrasound is wrong. We > are leaning toward Drs. Busch/sey as they were so helpful via > email. However, we have family in Louisville that could be helpful. > > I would appreciate any assistance that might help us find alternative > doctors, and affirm our decision to use the Ponseti method. > > Regards, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi Jane and welcome to the group. Sorry you have to be here but I will say it's one of the greatest places to be where you actually are connected with people either dealing with this disease or providing care to someone who is first hand. What you will find is the many things we all have in common and the alternatives that are out there. Please keep us posted on your " mum " and with more details, we will be able to provide better suggestions. As to your question about your own well being....get a colonoscopy AS SOON AS POSSIBLE. My husband's father died of this awful disease when he was 57 years old with a tumor the size of a grapefruit in his right colon. At the time, they estimated that it had been growing well over 5 years. In turn, my husband was diagnosed with about a 5 year old tumor, right side, when he was 51! He had been testing since age 43 but only with sigmonoscopies that DO NOT show the whole colon. If his insurance had okay'd a colonscopy when he first started screening, I wouldn't be posting on this board today. Our son, who is 27, is having his first colonscopy in the next month or two. With both parents having this disease, it is extremely important for you to start screening early. Fondly, Monika > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi Jane and welcome to the group. Sorry you have to be here but I will say it's one of the greatest places to be where you actually are connected with people either dealing with this disease or providing care to someone who is first hand. What you will find is the many things we all have in common and the alternatives that are out there. Please keep us posted on your " mum " and with more details, we will be able to provide better suggestions. As to your question about your own well being....get a colonoscopy AS SOON AS POSSIBLE. My husband's father died of this awful disease when he was 57 years old with a tumor the size of a grapefruit in his right colon. At the time, they estimated that it had been growing well over 5 years. In turn, my husband was diagnosed with about a 5 year old tumor, right side, when he was 51! He had been testing since age 43 but only with sigmonoscopies that DO NOT show the whole colon. If his insurance had okay'd a colonscopy when he first started screening, I wouldn't be posting on this board today. Our son, who is 27, is having his first colonscopy in the next month or two. With both parents having this disease, it is extremely important for you to start screening early. Fondly, Monika > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi Jane and welcome to the group. Sorry you have to be here but I will say it's one of the greatest places to be where you actually are connected with people either dealing with this disease or providing care to someone who is first hand. What you will find is the many things we all have in common and the alternatives that are out there. Please keep us posted on your " mum " and with more details, we will be able to provide better suggestions. As to your question about your own well being....get a colonoscopy AS SOON AS POSSIBLE. My husband's father died of this awful disease when he was 57 years old with a tumor the size of a grapefruit in his right colon. At the time, they estimated that it had been growing well over 5 years. In turn, my husband was diagnosed with about a 5 year old tumor, right side, when he was 51! He had been testing since age 43 but only with sigmonoscopies that DO NOT show the whole colon. If his insurance had okay'd a colonscopy when he first started screening, I wouldn't be posting on this board today. Our son, who is 27, is having his first colonscopy in the next month or two. With both parents having this disease, it is extremely important for you to start screening early. Fondly, Monika > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane Hi Jane, I hate you have to be here with our group, but we all welcome you.I agree with Monika please come back and post after surgery and you know more. It is very important that you and all your siblings have a colonoscopy as soon as possible.Good Luck and I will pray for your mom. Hugs jana > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane Hi Jane, I hate you have to be here with our group, but we all welcome you.I agree with Monika please come back and post after surgery and you know more. It is very important that you and all your siblings have a colonoscopy as soon as possible.Good Luck and I will pray for your mom. Hugs jana > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane Hi Jane, I hate you have to be here with our group, but we all welcome you.I agree with Monika please come back and post after surgery and you know more. It is very important that you and all your siblings have a colonoscopy as soon as possible.Good Luck and I will pray for your mom. Hugs jana > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Dear Jane--go ahead and jump in--we need a good dose of UK straightforwardness. Hope your mom's surgery takes care of disease, or gets it where it can be controlled. If you need more info on colostomy/ileostomy besides what your dad has acquired all these years, check out http://www.uoa.org/discussion_main.htm --it's the best. As for possible genetic link read recent posts here for updated info on testing. Best results to you all-- Katy > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Dear Jane--go ahead and jump in--we need a good dose of UK straightforwardness. Hope your mom's surgery takes care of disease, or gets it where it can be controlled. If you need more info on colostomy/ileostomy besides what your dad has acquired all these years, check out http://www.uoa.org/discussion_main.htm --it's the best. As for possible genetic link read recent posts here for updated info on testing. Best results to you all-- Katy > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Dear Jane--go ahead and jump in--we need a good dose of UK straightforwardness. Hope your mom's surgery takes care of disease, or gets it where it can be controlled. If you need more info on colostomy/ileostomy besides what your dad has acquired all these years, check out http://www.uoa.org/discussion_main.htm --it's the best. As for possible genetic link read recent posts here for updated info on testing. Best results to you all-- Katy > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Jane, Run, don't walk to the nearest phone and make a appointment for a colonoscopy. Do not settle for a sigmoidoscopy. Our Oncologist and Gastro doctor said when one parent has colon cancer the kids should start right away. Of course my kids are 40 and 43. My Son did just that and he was clean and the Gastro recommended every three years from now on. My daughter who has two children and is 43 still refuses to have one. Her father had begged, pleaded and she will NOT get one. You can avoid this disease if you get yourself tested. Joyce > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Jane, Run, don't walk to the nearest phone and make a appointment for a colonoscopy. Do not settle for a sigmoidoscopy. Our Oncologist and Gastro doctor said when one parent has colon cancer the kids should start right away. Of course my kids are 40 and 43. My Son did just that and he was clean and the Gastro recommended every three years from now on. My daughter who has two children and is 43 still refuses to have one. Her father had begged, pleaded and she will NOT get one. You can avoid this disease if you get yourself tested. Joyce > Hello there, > > Just had a quick browse through the messages and you all seem a > fairly positive bunch. I guess the reason why I'm here is the same > as most of the rest of you - it's not the kind of group you just hang > around in. My Mum has just (today) been diagnosed with having Colon > cancer, little more is known at the moment. She's got a full body > scan tomorrow, and then a meeting with her surgeon on Friday before > (probably) surgery on Tuesday next week. The little we know (I > wasn't at the hospital with her, my Father was - I'm 250 miles away) > is that they're going to remove a section of her colon, but she won't > need a colostomy in the long term (short term wasn't mentioned). As > you can imagine, I've got a whole heap of questions that I won't be > able to get answers to for quite a while. We don't know how > agressive the cancer is, treatments plans or anything yet - just that > it's there. > > On a totally selfish note, what do I need to know from my perspective > (I'm 31) to work out the risk to my own health - just to put you in > the picture, my Father also had colon cancer 21 years ago and had a > section of his colon removed. He's still going strong, and has > adapted to life with a colostomy very well (well, after 21 years > you'd hope so!). > > Jane > UK > > PS Hope I haven't broken any group etiquette but thought I'd pretty > much jump in with both feet :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi all, this is Marsanne, yahoo ID canoetrip_2000, also posts as Firefly. I am at my mother's computer and have signed her up with a Yahoo account, so SHE is Granmom3, not me! She has Stage 4 Colon Cancer, with liver mets, and if I share too much information she will get mad at me. She is an introvert. Good thing this is pseudonym. If you want her real name, email me and I will blackmail her to keep it private. <G> After a year of successful treatment with chemo, she just found out that there is a new tumor in her liver, and she agreed that this group would be a good place for her. The doctor is starting her on Avastin next week. Mom is an outstanding woman. She and Dad raised 5 kids on an air traffic controller's salary. She hung wall paper to get me through college. Dad just passed away a couple of months ago, but he was really old and an invalid in a nursing home and ready to go. Mom is still rockin and sockin at the age of 71. This is an amazing, wonderful woman and we are all just crazy about her. We will do ANYTHING to keep her going! She has 3 beautiful grandchildren and wants to see them grow up. I live 250 miles away, and am trying to find a job in this city so I can move here and be near her and spend as much time with her as possible and harass her and probably send her to an early grave! No, really, I want to take care of her. (She hates me.) OK, please welcome my mother to this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Welcome, granmom3. You are in the right place. Please feel free to jump in any time with your questions, comments and concerns. You sound like you have a wonderful daughter so you already have one piece of the recovery puzzle in place - strong family support! Looking forward to hearing from you soon - Peggy granmom3 wrote: > Hi all, this is Marsanne, yahoo ID canoetrip_2000, also posts as > Firefly. I am at my mother's computer and have signed her up with a > Yahoo account, so SHE is Granmom3, not me! She has Stage 4 Colon > Cancer, with liver mets, and if I share too much information she > will get mad at me. She is an introvert. Good thing this is > pseudonym. If you want her real name, email me and I will blackmail > her to keep it private. <G> > > After a year of successful treatment with chemo, she just found out > that there is a new tumor in her liver, and she agreed that this > group would be a good place for her. The doctor is starting her on > Avastin next week. Mom is an outstanding woman. She and Dad raised 5 > kids on an air traffic controller's salary. She hung wall paper to > get me through college. Dad just passed away a couple of months ago, > but he was really old and an invalid in a nursing home and ready to > go. Mom is still rockin and sockin at the age of 71. This is an > amazing, wonderful woman and we are all just crazy about her. We > will do ANYTHING to keep her going! She has 3 beautiful > grandchildren and wants to see them grow up. > > I live 250 miles away, and am trying to find a job in this city so I > can move here and be near her and spend as much time with her as > possible and harass her and probably send her to an early grave! No, > really, I want to take care of her. (She hates me.) > OK, please welcome my mother to this group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Welcome, granmom3. You are in the right place. Please feel free to jump in any time with your questions, comments and concerns. You sound like you have a wonderful daughter so you already have one piece of the recovery puzzle in place - strong family support! Looking forward to hearing from you soon - Peggy granmom3 wrote: > Hi all, this is Marsanne, yahoo ID canoetrip_2000, also posts as > Firefly. I am at my mother's computer and have signed her up with a > Yahoo account, so SHE is Granmom3, not me! She has Stage 4 Colon > Cancer, with liver mets, and if I share too much information she > will get mad at me. She is an introvert. Good thing this is > pseudonym. If you want her real name, email me and I will blackmail > her to keep it private. <G> > > After a year of successful treatment with chemo, she just found out > that there is a new tumor in her liver, and she agreed that this > group would be a good place for her. The doctor is starting her on > Avastin next week. Mom is an outstanding woman. She and Dad raised 5 > kids on an air traffic controller's salary. She hung wall paper to > get me through college. Dad just passed away a couple of months ago, > but he was really old and an invalid in a nursing home and ready to > go. Mom is still rockin and sockin at the age of 71. This is an > amazing, wonderful woman and we are all just crazy about her. We > will do ANYTHING to keep her going! She has 3 beautiful > grandchildren and wants to see them grow up. > > I live 250 miles away, and am trying to find a job in this city so I > can move here and be near her and spend as much time with her as > possible and harass her and probably send her to an early grave! No, > really, I want to take care of her. (She hates me.) > OK, please welcome my mother to this group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Welcome, granmom3. You are in the right place. Please feel free to jump in any time with your questions, comments and concerns. You sound like you have a wonderful daughter so you already have one piece of the recovery puzzle in place - strong family support! Looking forward to hearing from you soon - Peggy granmom3 wrote: > Hi all, this is Marsanne, yahoo ID canoetrip_2000, also posts as > Firefly. I am at my mother's computer and have signed her up with a > Yahoo account, so SHE is Granmom3, not me! She has Stage 4 Colon > Cancer, with liver mets, and if I share too much information she > will get mad at me. She is an introvert. Good thing this is > pseudonym. If you want her real name, email me and I will blackmail > her to keep it private. <G> > > After a year of successful treatment with chemo, she just found out > that there is a new tumor in her liver, and she agreed that this > group would be a good place for her. The doctor is starting her on > Avastin next week. Mom is an outstanding woman. She and Dad raised 5 > kids on an air traffic controller's salary. She hung wall paper to > get me through college. Dad just passed away a couple of months ago, > but he was really old and an invalid in a nursing home and ready to > go. Mom is still rockin and sockin at the age of 71. This is an > amazing, wonderful woman and we are all just crazy about her. We > will do ANYTHING to keep her going! She has 3 beautiful > grandchildren and wants to see them grow up. > > I live 250 miles away, and am trying to find a job in this city so I > can move here and be near her and spend as much time with her as > possible and harass her and probably send her to an early grave! No, > really, I want to take care of her. (She hates me.) > OK, please welcome my mother to this group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 hi , welcome! Just keep reading, you will find lots of pearls on here. I've been hanging around for a couple of months and there is nothing quite like having so many people that truly understand what you have to live with. I completely understand your fear of being like her with children. I have raised and countless others as I own childcare center. I have, and do, have to work on keeping my temper in check and not overreacting to situations with kids, but then again anyone that has ever dealt with them has to admit that comes with the territory. From what I gather we have to deal with the effects of being raised by a person with BPD, but that doesn't make us one. if anything we tend to be hypersensitive to being the best we can be with our kids. My kids have awesome self esteem because that is something my nada took from me. Get it? Again, welcome. look forward to getting to know you and having the benefit of your experiences and revelations. > > Hello everybody, > > My name is . I am new to the list. I am 39 years old. For several decades I knew something was wrong with my mother - but I always thought it was her substance abuse problem that was the main issue. Several times over the years I dabbled in the idea that she might be a Borderline, but it was too unbelievable or for whatever reason it didn't stick. My dad died last week and I went to a therapy session this morning to process it. Part of that processing was discussing my mother (as it always has been the case) and my therapist clearly labeled her as a Borderline and I very clearly heard it. I am reading what I can about about it and just joined this group. I feel like a bomb of revelation has been dropped before me - my mother is a Borderline. She will never change and I need to stop fighting for what I will never have and never have had from her. Wow - I feel a sense of freedom and comprehension now that there is a name for what she has and and an explanation for who and what she is. I would LOVE to hear from others of you out there, adult children of Borderline mothers who have gone on to make happy, healthy lives for themselves. I have a wonderful husband and a wonderful life. I have been emotionally blocking myself from starting a family because I don't want to be like my mother - and I think I'm one step closer to understanding so much. This is my firs time doing an online support group, so it would be great to hear some pearls of wisdom from some of you. Thank you - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 hi , welcome! Just keep reading, you will find lots of pearls on here. I've been hanging around for a couple of months and there is nothing quite like having so many people that truly understand what you have to live with. I completely understand your fear of being like her with children. I have raised and countless others as I own childcare center. I have, and do, have to work on keeping my temper in check and not overreacting to situations with kids, but then again anyone that has ever dealt with them has to admit that comes with the territory. From what I gather we have to deal with the effects of being raised by a person with BPD, but that doesn't make us one. if anything we tend to be hypersensitive to being the best we can be with our kids. My kids have awesome self esteem because that is something my nada took from me. Get it? Again, welcome. look forward to getting to know you and having the benefit of your experiences and revelations. > > Hello everybody, > > My name is . I am new to the list. I am 39 years old. For several decades I knew something was wrong with my mother - but I always thought it was her substance abuse problem that was the main issue. Several times over the years I dabbled in the idea that she might be a Borderline, but it was too unbelievable or for whatever reason it didn't stick. My dad died last week and I went to a therapy session this morning to process it. Part of that processing was discussing my mother (as it always has been the case) and my therapist clearly labeled her as a Borderline and I very clearly heard it. I am reading what I can about about it and just joined this group. I feel like a bomb of revelation has been dropped before me - my mother is a Borderline. She will never change and I need to stop fighting for what I will never have and never have had from her. Wow - I feel a sense of freedom and comprehension now that there is a name for what she has and and an explanation for who and what she is. I would LOVE to hear from others of you out there, adult children of Borderline mothers who have gone on to make happy, healthy lives for themselves. I have a wonderful husband and a wonderful life. I have been emotionally blocking myself from starting a family because I don't want to be like my mother - and I think I'm one step closer to understanding so much. This is my firs time doing an online support group, so it would be great to hear some pearls of wisdom from some of you. Thank you - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 hi , welcome! Just keep reading, you will find lots of pearls on here. I've been hanging around for a couple of months and there is nothing quite like having so many people that truly understand what you have to live with. I completely understand your fear of being like her with children. I have raised and countless others as I own childcare center. I have, and do, have to work on keeping my temper in check and not overreacting to situations with kids, but then again anyone that has ever dealt with them has to admit that comes with the territory. From what I gather we have to deal with the effects of being raised by a person with BPD, but that doesn't make us one. if anything we tend to be hypersensitive to being the best we can be with our kids. My kids have awesome self esteem because that is something my nada took from me. Get it? Again, welcome. look forward to getting to know you and having the benefit of your experiences and revelations. > > Hello everybody, > > My name is . I am new to the list. I am 39 years old. For several decades I knew something was wrong with my mother - but I always thought it was her substance abuse problem that was the main issue. Several times over the years I dabbled in the idea that she might be a Borderline, but it was too unbelievable or for whatever reason it didn't stick. My dad died last week and I went to a therapy session this morning to process it. Part of that processing was discussing my mother (as it always has been the case) and my therapist clearly labeled her as a Borderline and I very clearly heard it. I am reading what I can about about it and just joined this group. I feel like a bomb of revelation has been dropped before me - my mother is a Borderline. She will never change and I need to stop fighting for what I will never have and never have had from her. Wow - I feel a sense of freedom and comprehension now that there is a name for what she has and and an explanation for who and what she is. I would LOVE to hear from others of you out there, adult children of Borderline mothers who have gone on to make happy, healthy lives for themselves. I have a wonderful husband and a wonderful life. I have been emotionally blocking myself from starting a family because I don't want to be like my mother - and I think I'm one step closer to understanding so much. This is my firs time doing an online support group, so it would be great to hear some pearls of wisdom from some of you. Thank you - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 hi , welcome! Just keep reading, you will find lots of pearls on here. I've been hanging around for a couple of months and there is nothing quite like having so many people that truly understand what you have to live with. I completely understand your fear of being like her with children. I have raised and countless others as I own childcare center. I have, and do, have to work on keeping my temper in check and not overreacting to situations with kids, but then again anyone that has ever dealt with them has to admit that comes with the territory. From what I gather we have to deal with the effects of being raised by a person with BPD, but that doesn't make us one. if anything we tend to be hypersensitive to being the best we can be with our kids. My kids have awesome self esteem because that is something my nada took from me. Get it? Again, welcome. look forward to getting to know you and having the benefit of your experiences and revelations. > > Hello everybody, > > My name is . I am new to the list. I am 39 years old. For several decades I knew something was wrong with my mother - but I always thought it was her substance abuse problem that was the main issue. Several times over the years I dabbled in the idea that she might be a Borderline, but it was too unbelievable or for whatever reason it didn't stick. My dad died last week and I went to a therapy session this morning to process it. Part of that processing was discussing my mother (as it always has been the case) and my therapist clearly labeled her as a Borderline and I very clearly heard it. I am reading what I can about about it and just joined this group. I feel like a bomb of revelation has been dropped before me - my mother is a Borderline. She will never change and I need to stop fighting for what I will never have and never have had from her. Wow - I feel a sense of freedom and comprehension now that there is a name for what she has and and an explanation for who and what she is. I would LOVE to hear from others of you out there, adult children of Borderline mothers who have gone on to make happy, healthy lives for themselves. I have a wonderful husband and a wonderful life. I have been emotionally blocking myself from starting a family because I don't want to be like my mother - and I think I'm one step closer to understanding so much. This is my firs time doing an online support group, so it would be great to hear some pearls of wisdom from some of you. Thank you - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 hi , welcome! Just keep reading, you will find lots of pearls on here. I've been hanging around for a couple of months and there is nothing quite like having so many people that truly understand what you have to live with. I completely understand your fear of being like her with children. I have raised and countless others as I own childcare center. I have, and do, have to work on keeping my temper in check and not overreacting to situations with kids, but then again anyone that has ever dealt with them has to admit that comes with the territory. From what I gather we have to deal with the effects of being raised by a person with BPD, but that doesn't make us one. if anything we tend to be hypersensitive to being the best we can be with our kids. My kids have awesome self esteem because that is something my nada took from me. Get it? Again, welcome. look forward to getting to know you and having the benefit of your experiences and revelations. > > Hello everybody, > > My name is . I am new to the list. I am 39 years old. For several decades I knew something was wrong with my mother - but I always thought it was her substance abuse problem that was the main issue. Several times over the years I dabbled in the idea that she might be a Borderline, but it was too unbelievable or for whatever reason it didn't stick. My dad died last week and I went to a therapy session this morning to process it. Part of that processing was discussing my mother (as it always has been the case) and my therapist clearly labeled her as a Borderline and I very clearly heard it. I am reading what I can about about it and just joined this group. I feel like a bomb of revelation has been dropped before me - my mother is a Borderline. She will never change and I need to stop fighting for what I will never have and never have had from her. Wow - I feel a sense of freedom and comprehension now that there is a name for what she has and and an explanation for who and what she is. I would LOVE to hear from others of you out there, adult children of Borderline mothers who have gone on to make happy, healthy lives for themselves. I have a wonderful husband and a wonderful life. I have been emotionally blocking myself from starting a family because I don't want to be like my mother - and I think I'm one step closer to understanding so much. This is my firs time doing an online support group, so it would be great to hear some pearls of wisdom from some of you. Thank you - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 hi , welcome! Just keep reading, you will find lots of pearls on here. I've been hanging around for a couple of months and there is nothing quite like having so many people that truly understand what you have to live with. I completely understand your fear of being like her with children. I have raised and countless others as I own childcare center. I have, and do, have to work on keeping my temper in check and not overreacting to situations with kids, but then again anyone that has ever dealt with them has to admit that comes with the territory. From what I gather we have to deal with the effects of being raised by a person with BPD, but that doesn't make us one. if anything we tend to be hypersensitive to being the best we can be with our kids. My kids have awesome self esteem because that is something my nada took from me. Get it? Again, welcome. look forward to getting to know you and having the benefit of your experiences and revelations. > > Hello everybody, > > My name is . I am new to the list. I am 39 years old. For several decades I knew something was wrong with my mother - but I always thought it was her substance abuse problem that was the main issue. Several times over the years I dabbled in the idea that she might be a Borderline, but it was too unbelievable or for whatever reason it didn't stick. My dad died last week and I went to a therapy session this morning to process it. Part of that processing was discussing my mother (as it always has been the case) and my therapist clearly labeled her as a Borderline and I very clearly heard it. I am reading what I can about about it and just joined this group. I feel like a bomb of revelation has been dropped before me - my mother is a Borderline. She will never change and I need to stop fighting for what I will never have and never have had from her. Wow - I feel a sense of freedom and comprehension now that there is a name for what she has and and an explanation for who and what she is. I would LOVE to hear from others of you out there, adult children of Borderline mothers who have gone on to make happy, healthy lives for themselves. I have a wonderful husband and a wonderful life. I have been emotionally blocking myself from starting a family because I don't want to be like my mother - and I think I'm one step closer to understanding so much. This is my firs time doing an online support group, so it would be great to hear some pearls of wisdom from some of you. Thank you - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 I'm sorry you are going through this. Nurses have to document when they give meds so if she had to wait three hours there will be record of it. I doubt seriously a nurse gave her a drug that was not prescribed for her because I can't see a nurse putting her liscense on the line for something like that. She might have a bunch of meds prescribed 'as needed' or prn and that might be one of them. If you have power of attorney you should be able to access her records to see if these things are really being done. She sounds difficult and I am so sorry that is going on. > > Hello, all. > > This is my first post. My name is Dave. I live in the Philadelphia area, and > I'm 37. I have a wonderful wife who unfortunately has secondary-progressive > Multiple Sclerosis (no kids), a 33-year-old sister who lost her only child > (a 2 1/2-year-old boy) to Leukemia a couple years ago), a 68-year-old father > who is a master at emotional manipulation (and the one I perceive as more > responsible for causing his marriage to end over 15 years ago), and a > 64-year-old mother who is exceptionally anxious, has Crohn's Disease, and > was diagnosed with terminal cancer two Septembers ago. She also has BPD. > > Life is difficult. The most unsettling thing now in my life is after having > moved nada into a wonderful in-patient hospice a month ago, she wants out. > She believes they're not providing her compassionate comfort. She's overly > sensitive to noises and scents. She believes that the medicines she takes > (sometimes) make her worse. She believes the nurses and others there are > mean to her. She's fixated on a memory of a few weeks ago that she had to > wait three hours for a medication (this probably didn't even happen). > Because of that, recently she " tongued " some meds a few times in order to > stash them for later in the event that the nurse would " ignore " her again. > Understandably, the hospice is now crushing the meds and dissolving them in > water. This makes her more angry. Muddling this situation further is a > well-meaning nurse who trusted my mom enough to give her the pills normally. > Yesterday morning she even gave my mom Reglan (my mom had asked for this > because she knows her roommate also gets this med) even though it isn't even > prescribed for her! I imagine my mom was doing her usual, crafty > begging/manipulating. She's angry that the staff have tightened up and will > not give her any more Reglan. > > And today, it appears she's going to leave the hospice. > > I usually do most of the silly things my mom asks me. But I do draw the > line. Last week my mom was infuriated with me when I had a talk with her, > letting her know that I trusted the staff, saw no evidence of what she was > charging them with, and suggested she'd be better off letting go of her > negative feelings as best she can. She informed me that she could no longer > trust me and asked me to leave. Two days later we made up when I called her > and said I'd like for us to get along. But today, after she realized I > wouldn't play her game, she got angry at me again. I told her flat out that > she shouldn't do this because she has nowhere to go. She was counting on me > to take her side, go to pick her up, and take her God-knows-where. > > Is there anybody else on this list that has experience with a nada or fada > who also has a terminal illness? To say this is a challenge is the > understatement of the year... > > Thanks for listening. > > > _______________________ > Regards, > > Dave > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 I'm sorry you are going through this. Nurses have to document when they give meds so if she had to wait three hours there will be record of it. I doubt seriously a nurse gave her a drug that was not prescribed for her because I can't see a nurse putting her liscense on the line for something like that. She might have a bunch of meds prescribed 'as needed' or prn and that might be one of them. If you have power of attorney you should be able to access her records to see if these things are really being done. She sounds difficult and I am so sorry that is going on. > > Hello, all. > > This is my first post. My name is Dave. I live in the Philadelphia area, and > I'm 37. I have a wonderful wife who unfortunately has secondary-progressive > Multiple Sclerosis (no kids), a 33-year-old sister who lost her only child > (a 2 1/2-year-old boy) to Leukemia a couple years ago), a 68-year-old father > who is a master at emotional manipulation (and the one I perceive as more > responsible for causing his marriage to end over 15 years ago), and a > 64-year-old mother who is exceptionally anxious, has Crohn's Disease, and > was diagnosed with terminal cancer two Septembers ago. She also has BPD. > > Life is difficult. The most unsettling thing now in my life is after having > moved nada into a wonderful in-patient hospice a month ago, she wants out. > She believes they're not providing her compassionate comfort. She's overly > sensitive to noises and scents. She believes that the medicines she takes > (sometimes) make her worse. She believes the nurses and others there are > mean to her. She's fixated on a memory of a few weeks ago that she had to > wait three hours for a medication (this probably didn't even happen). > Because of that, recently she " tongued " some meds a few times in order to > stash them for later in the event that the nurse would " ignore " her again. > Understandably, the hospice is now crushing the meds and dissolving them in > water. This makes her more angry. Muddling this situation further is a > well-meaning nurse who trusted my mom enough to give her the pills normally. > Yesterday morning she even gave my mom Reglan (my mom had asked for this > because she knows her roommate also gets this med) even though it isn't even > prescribed for her! I imagine my mom was doing her usual, crafty > begging/manipulating. She's angry that the staff have tightened up and will > not give her any more Reglan. > > And today, it appears she's going to leave the hospice. > > I usually do most of the silly things my mom asks me. But I do draw the > line. Last week my mom was infuriated with me when I had a talk with her, > letting her know that I trusted the staff, saw no evidence of what she was > charging them with, and suggested she'd be better off letting go of her > negative feelings as best she can. She informed me that she could no longer > trust me and asked me to leave. Two days later we made up when I called her > and said I'd like for us to get along. But today, after she realized I > wouldn't play her game, she got angry at me again. I told her flat out that > she shouldn't do this because she has nowhere to go. She was counting on me > to take her side, go to pick her up, and take her God-knows-where. > > Is there anybody else on this list that has experience with a nada or fada > who also has a terminal illness? To say this is a challenge is the > understatement of the year... > > Thanks for listening. > > > _______________________ > Regards, > > Dave > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2010 Report Share Posted July 22, 2010 I'm sorry you are going through this. Nurses have to document when they give meds so if she had to wait three hours there will be record of it. I doubt seriously a nurse gave her a drug that was not prescribed for her because I can't see a nurse putting her liscense on the line for something like that. She might have a bunch of meds prescribed 'as needed' or prn and that might be one of them. If you have power of attorney you should be able to access her records to see if these things are really being done. She sounds difficult and I am so sorry that is going on. > > Hello, all. > > This is my first post. My name is Dave. I live in the Philadelphia area, and > I'm 37. I have a wonderful wife who unfortunately has secondary-progressive > Multiple Sclerosis (no kids), a 33-year-old sister who lost her only child > (a 2 1/2-year-old boy) to Leukemia a couple years ago), a 68-year-old father > who is a master at emotional manipulation (and the one I perceive as more > responsible for causing his marriage to end over 15 years ago), and a > 64-year-old mother who is exceptionally anxious, has Crohn's Disease, and > was diagnosed with terminal cancer two Septembers ago. She also has BPD. > > Life is difficult. The most unsettling thing now in my life is after having > moved nada into a wonderful in-patient hospice a month ago, she wants out. > She believes they're not providing her compassionate comfort. She's overly > sensitive to noises and scents. She believes that the medicines she takes > (sometimes) make her worse. She believes the nurses and others there are > mean to her. She's fixated on a memory of a few weeks ago that she had to > wait three hours for a medication (this probably didn't even happen). > Because of that, recently she " tongued " some meds a few times in order to > stash them for later in the event that the nurse would " ignore " her again. > Understandably, the hospice is now crushing the meds and dissolving them in > water. This makes her more angry. Muddling this situation further is a > well-meaning nurse who trusted my mom enough to give her the pills normally. > Yesterday morning she even gave my mom Reglan (my mom had asked for this > because she knows her roommate also gets this med) even though it isn't even > prescribed for her! I imagine my mom was doing her usual, crafty > begging/manipulating. She's angry that the staff have tightened up and will > not give her any more Reglan. > > And today, it appears she's going to leave the hospice. > > I usually do most of the silly things my mom asks me. But I do draw the > line. Last week my mom was infuriated with me when I had a talk with her, > letting her know that I trusted the staff, saw no evidence of what she was > charging them with, and suggested she'd be better off letting go of her > negative feelings as best she can. She informed me that she could no longer > trust me and asked me to leave. Two days later we made up when I called her > and said I'd like for us to get along. But today, after she realized I > wouldn't play her game, she got angry at me again. I told her flat out that > she shouldn't do this because she has nowhere to go. She was counting on me > to take her side, go to pick her up, and take her God-knows-where. > > Is there anybody else on this list that has experience with a nada or fada > who also has a terminal illness? To say this is a challenge is the > understatement of the year... > > Thanks for listening. > > > _______________________ > Regards, > > Dave > Quote Link to comment Share on other sites More sharing options...
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