my mother-in-law
Comments
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Hi, I am a survivor of stage
Hi, I am a survivor of stage three EC.Your in-laws need someone with them when they talk to the drs. notes need to be taken . You will be getting response from people that can give you better advice than I. Surgery is not usually done if it's stage four, so this sounds good. It's confusing to me the way the chemo was given. Maybe it would help to educate yourself on esophageal cancer and what to expect.I'm sure they did biopsy's of lymph nodes to see if there is cancer there. Was part of esophagus and stomach removed?It seems there is so much lack of knowledge. the care she receives now is as important as before surgery. Read all the post you will be receiving and learn, learn, learn. Your in-laws need someone to take charge.
Know that we all care and please continue letting us know what is going on,
Sandra0 -
thanks for your replysandy1943 said:Hi, I am a survivor of stage
Hi, I am a survivor of stage three EC.Your in-laws need someone with them when they talk to the drs. notes need to be taken . You will be getting response from people that can give you better advice than I. Surgery is not usually done if it's stage four, so this sounds good. It's confusing to me the way the chemo was given. Maybe it would help to educate yourself on esophageal cancer and what to expect.I'm sure they did biopsy's of lymph nodes to see if there is cancer there. Was part of esophagus and stomach removed?It seems there is so much lack of knowledge. the care she receives now is as important as before surgery. Read all the post you will be receiving and learn, learn, learn. Your in-laws need someone to take charge.
Know that we all care and please continue letting us know what is going on,
Sandra
thanks for your reply sandra. in the abscence of any concrete first hand information, i have indeed read everything i can possibly find on EC. my mother-in-law seems to not fit into any pigeon hole. she is a very heavy smoker since her teenage years. i dont know who could take charge. they have 5 adult children including my husband but they are 2 extremely domineering characters although kindly. as it stands she is 13 hours after her operation. it is dawn hear and we have had no bad news during the night. would the thoracic surgeon not be able to see if the lymph nodes were cancerous? she had lost about 3 stone recently she is less than 100lbs. the original plan with the chemo was that she would get 3 double oses of chemo over a 9 week period. she got one dose with one steroid injection. her reaction to this was so extreme they appeared to abandon that plan. thank you again for your kind reply. BTW we are in ireland, my mother-in-law in dublin and we in Tipperary where it is raining and a little cold early in the morning.0 -
staggered by your kindnessunknown said:This comment has been removed by the Moderator
dear sir
let me say firstly that i am staggered by your kindness in replying to me at such length and with such sympathy to a total stranger. you know of course you are doing what Jesus would do, reaching out to total strangers with no expectation of thanks or reward. God Bless you and your family mr marshall. i am very keen to reply to your points. what i shall do is print out your wonderfull post and type up my reply in a "Word" document and copy and paste it as a post. i intend to do this tomorrow as right now it is bedtime here in tipperary. hopefully you will log in tomorrow to find my reply. thank you again so much, both of you. she has come through her 1st day since surgery quite unscathed. she had some arrhythmia this afternoon but medication appeared to have sorted it out. her blood pressure was low enough to cause concern but that too appears to have righted itself. i continue to be the only family member who seems to think that there are still many hurdles to overcome, but then im the only one who appears to have done any research. or maybe im the only one who will raise my head above the parapet, so to speak. please look out for my more detailed reply tomorrow. again, i cant thank you enough. my name is cecilia.0 -
1partial reply to Mr Marshallunknown said:This comment has been removed by the Moderator
1. "my mother in law had her oesophagus removed today. shes only 64.she was diagnosed on 6 july this year."
Question: What was the name of operation which your Mother-in-law had?
Heres where w e have our first culture clash. working class irish people do not ask professors questions like that. They thank the proessor for his hard work and doff their hats. Thats if they actually get to speak to the professor after the op. My father in law paddy v was lucky enough to speak to one of professors team,actually thats not altogether true. I gather all was explained at the pre-op meeting last Saturday, but as always the details when explained to extended family were glossed over and family did not press for more . that is the pattern established in this family regarding this illness, and i as adaughter-in-law, am not about to stick
my neck out. Even irish people who have private healthinsurance, and my parents –in-law do not, are very reluctant to question the consultant. He or she is always given their proper title either mr,ms or professor. Its an irish thing.from what i can make out sheila had the full blown chest open ivor lewis method. Why will remain a mystery unless 1 of her 5 adult children decide to break ranks and actually ask.
Where was your mother given the diagnosis on July 6, 2010?
Around the middle of july she eventually went to her doctor complaing of not being able to swallow bread. He immediately referred her to the hospital were they did an endoscopy a barium swallow and took a biopsy. Sheila told her daughter quite casually. Neither of them associated the word biopsy with cancer i know this is hard for u to believe but it is true. The first i knew sheila had any trouble with her digestive sytem was when this daughter, linda, mentioned to me, also quite casually, that her mother had an infection in her stomach and that she was having a biopsy. Of course a red flag immediately went up in my head but i did not think it my place to use the word cancer. I figured they would no soon enough one way or another. Almost 3 weeks later sheila rang here to speak to my husband dave. This would be unusual as she will normally be quite happy to chat to whoever answers the phone. She anounced that she had a blockage and that she would be having some treatment. She blurted out that 2 weeks previous she had been recalled tothe hospital to get the results of the biopsy and had been told by what i have susequently learned was an oncolgist that she had ec and that she should get her affairs in order as she may only have 3=4 months to live. She and paddy then sat on this nugget of news for 2 weeks. 2 weeks. They told noone. Imagine. They then had their first meeting with professor broe who appears to have been far more positive. But to this day neither have ever used the word cancer or tumour, not to mention oesophagus. This is what i am up against. Thans once again for listening to me i will try to post more tomorrow. Today is day 2 post op. They are still unhappy with her too low blood pressure, blood counts too low and erratic heart rate. Otherwise satisfactory. Given a blood transfusion this evening. Has an eipdural. Still very groggy. We are going to visit her tomorrow. God bless.0 -
Sounds like my familymrsbyrne said:1partial reply to Mr Marshall
1. "my mother in law had her oesophagus removed today. shes only 64.she was diagnosed on 6 july this year."
Question: What was the name of operation which your Mother-in-law had?
Heres where w e have our first culture clash. working class irish people do not ask professors questions like that. They thank the proessor for his hard work and doff their hats. Thats if they actually get to speak to the professor after the op. My father in law paddy v was lucky enough to speak to one of professors team,actually thats not altogether true. I gather all was explained at the pre-op meeting last Saturday, but as always the details when explained to extended family were glossed over and family did not press for more . that is the pattern established in this family regarding this illness, and i as adaughter-in-law, am not about to stick
my neck out. Even irish people who have private healthinsurance, and my parents –in-law do not, are very reluctant to question the consultant. He or she is always given their proper title either mr,ms or professor. Its an irish thing.from what i can make out sheila had the full blown chest open ivor lewis method. Why will remain a mystery unless 1 of her 5 adult children decide to break ranks and actually ask.
Where was your mother given the diagnosis on July 6, 2010?
Around the middle of july she eventually went to her doctor complaing of not being able to swallow bread. He immediately referred her to the hospital were they did an endoscopy a barium swallow and took a biopsy. Sheila told her daughter quite casually. Neither of them associated the word biopsy with cancer i know this is hard for u to believe but it is true. The first i knew sheila had any trouble with her digestive sytem was when this daughter, linda, mentioned to me, also quite casually, that her mother had an infection in her stomach and that she was having a biopsy. Of course a red flag immediately went up in my head but i did not think it my place to use the word cancer. I figured they would no soon enough one way or another. Almost 3 weeks later sheila rang here to speak to my husband dave. This would be unusual as she will normally be quite happy to chat to whoever answers the phone. She anounced that she had a blockage and that she would be having some treatment. She blurted out that 2 weeks previous she had been recalled tothe hospital to get the results of the biopsy and had been told by what i have susequently learned was an oncolgist that she had ec and that she should get her affairs in order as she may only have 3=4 months to live. She and paddy then sat on this nugget of news for 2 weeks. 2 weeks. They told noone. Imagine. They then had their first meeting with professor broe who appears to have been far more positive. But to this day neither have ever used the word cancer or tumour, not to mention oesophagus. This is what i am up against. Thans once again for listening to me i will try to post more tomorrow. Today is day 2 post op. They are still unhappy with her too low blood pressure, blood counts too low and erratic heart rate. Otherwise satisfactory. Given a blood transfusion this evening. Has an eipdural. Still very groggy. We are going to visit her tomorrow. God bless.
Your post about Irish Culture sounds like my family all the way! The Doctor was is and always will be right after all they are DOCTORS . So I know that as a lower Class person in the U.S. we would not dare to ask questions. Of anyone we though were above us. So These things still are around , you do not have to be Irish. A wise teacher told me there is no dumb question that it only becomes dumb if it goes unasked. That you need to ask questions and learn from them. My family still to this day do not like the fact I will question or ask about what is going on . I may not be able to do allot but I do know to ask and expect answers!
I wish you good blessing .
Jennie0 -
This comment has been removed by the Moderatormrsbyrne said:1partial reply to Mr Marshall
1. "my mother in law had her oesophagus removed today. shes only 64.she was diagnosed on 6 july this year."
Question: What was the name of operation which your Mother-in-law had?
Heres where w e have our first culture clash. working class irish people do not ask professors questions like that. They thank the proessor for his hard work and doff their hats. Thats if they actually get to speak to the professor after the op. My father in law paddy v was lucky enough to speak to one of professors team,actually thats not altogether true. I gather all was explained at the pre-op meeting last Saturday, but as always the details when explained to extended family were glossed over and family did not press for more . that is the pattern established in this family regarding this illness, and i as adaughter-in-law, am not about to stick
my neck out. Even irish people who have private healthinsurance, and my parents –in-law do not, are very reluctant to question the consultant. He or she is always given their proper title either mr,ms or professor. Its an irish thing.from what i can make out sheila had the full blown chest open ivor lewis method. Why will remain a mystery unless 1 of her 5 adult children decide to break ranks and actually ask.
Where was your mother given the diagnosis on July 6, 2010?
Around the middle of july she eventually went to her doctor complaing of not being able to swallow bread. He immediately referred her to the hospital were they did an endoscopy a barium swallow and took a biopsy. Sheila told her daughter quite casually. Neither of them associated the word biopsy with cancer i know this is hard for u to believe but it is true. The first i knew sheila had any trouble with her digestive sytem was when this daughter, linda, mentioned to me, also quite casually, that her mother had an infection in her stomach and that she was having a biopsy. Of course a red flag immediately went up in my head but i did not think it my place to use the word cancer. I figured they would no soon enough one way or another. Almost 3 weeks later sheila rang here to speak to my husband dave. This would be unusual as she will normally be quite happy to chat to whoever answers the phone. She anounced that she had a blockage and that she would be having some treatment. She blurted out that 2 weeks previous she had been recalled tothe hospital to get the results of the biopsy and had been told by what i have susequently learned was an oncolgist that she had ec and that she should get her affairs in order as she may only have 3=4 months to live. She and paddy then sat on this nugget of news for 2 weeks. 2 weeks. They told noone. Imagine. They then had their first meeting with professor broe who appears to have been far more positive. But to this day neither have ever used the word cancer or tumour, not to mention oesophagus. This is what i am up against. Thans once again for listening to me i will try to post more tomorrow. Today is day 2 post op. They are still unhappy with her too low blood pressure, blood counts too low and erratic heart rate. Otherwise satisfactory. Given a blood transfusion this evening. Has an eipdural. Still very groggy. We are going to visit her tomorrow. God bless.0 -
William, I had forgottenunknown said:This comment has been removed by the Moderator
William, I had forgotten about my epidural until reading your comment to cecilia. As you know I had the ivor lewis. I had an epidural for pain the first Three days. I was over medicated pn pain meds the second day. I don't know if that is why I was given the epidural.Something to think about. I didn't have any side effects from it. I was up the fourth day after surgery.
Sandra0 -
visiting Sheilaunknown said:This comment has been removed by the Moderator
hi william and sandy!
we went to dublin yesterday to visit sheila on day 3 post her operation. of course we picked the wrong day to go. she had had the epidural taken down that morning in order to get her up to walk. under protest she had walked but was back in bed by the time we arrived and was absolutely shattered. of course when the epidural came down the full force of the pain and discomfort started to hit her like a hurricane for the first time.
she is like a little bird lying in bed, not as big as my 13 year old daughter. she couldnt open her eyes but recognised me when i spoke. i made a small joke and she laughed but immediately told me she was in chronic pain. as if by magic a nurse appeared with a bag of painkiller to add to the numerous lines of drips. she told the nurse she had a terrible pain "all across her back" and the nurse murmered sympathetically. we left and decided to call back later, but ultimately another family member rang us to say that whatever they had given her for the pain had knocked her out cold, and we had to return home without seeing her again. it is a 2 1/2 hour drive. consequently we spoke to paddy and he said that the nurses had spent along time trying to find a comfortable position for her to lie in and she had eventually dropped off. this morning she is going for her swallow test, so we await further details. what a truly dreadfull disease. however, as william pointed out there are so many stage 4 sufferers who would give their right arm to be in sheilas position today. PS the results of the biosy on the lymph nodes will not be available until the midddle of next week! thanks for all your help. god bless.0 -
swallow test went well!mrsbyrne said:visiting Sheila
hi william and sandy!
we went to dublin yesterday to visit sheila on day 3 post her operation. of course we picked the wrong day to go. she had had the epidural taken down that morning in order to get her up to walk. under protest she had walked but was back in bed by the time we arrived and was absolutely shattered. of course when the epidural came down the full force of the pain and discomfort started to hit her like a hurricane for the first time.
she is like a little bird lying in bed, not as big as my 13 year old daughter. she couldnt open her eyes but recognised me when i spoke. i made a small joke and she laughed but immediately told me she was in chronic pain. as if by magic a nurse appeared with a bag of painkiller to add to the numerous lines of drips. she told the nurse she had a terrible pain "all across her back" and the nurse murmered sympathetically. we left and decided to call back later, but ultimately another family member rang us to say that whatever they had given her for the pain had knocked her out cold, and we had to return home without seeing her again. it is a 2 1/2 hour drive. consequently we spoke to paddy and he said that the nurses had spent along time trying to find a comfortable position for her to lie in and she had eventually dropped off. this morning she is going for her swallow test, so we await further details. what a truly dreadfull disease. however, as william pointed out there are so many stage 4 sufferers who would give their right arm to be in sheilas position today. PS the results of the biosy on the lymph nodes will not be available until the midddle of next week! thanks for all your help. god bless.
thanks be to the Sacred Heart of Jesus, sheila's swallow test went well today. Dr Brogan is professor Broe's second in command and he told paddy that if all goes well again tomorrow she may well start on soft solids on Sunday. however he still urges a lot of caution and insists that many things may still go wrong. but for now the family are elated, and who would take that away from them after all these months of despair? not i. all the tubes except the catheter are "out" and she seems to have been in rather less discomfort today, although absolutely shattered again after the swallow testing and some physiotherapy which involved blowing plastic balls through a straw! so a good day for sheila, then. her daughters still dont realise that heir mother will never sit down and eat a big plate of steak and chips and peas again. they still think their mother will resume her previous life. the younger daughter in particular looks forward to "a big christmas dinner with mam eating even more roast potaoes than usual". none of them including my husband have felt able to "Google" oesophageal cancer. maybe their right and im wrong, who knows? im just glad i prayed for Professor Broe all day on Monday im wandering now. hoping all of you have some good news and the blessingsof Our Lord this weekend. regards. cecilia.0 -
It's true your mother-in lawmrsbyrne said:swallow test went well!
thanks be to the Sacred Heart of Jesus, sheila's swallow test went well today. Dr Brogan is professor Broe's second in command and he told paddy that if all goes well again tomorrow she may well start on soft solids on Sunday. however he still urges a lot of caution and insists that many things may still go wrong. but for now the family are elated, and who would take that away from them after all these months of despair? not i. all the tubes except the catheter are "out" and she seems to have been in rather less discomfort today, although absolutely shattered again after the swallow testing and some physiotherapy which involved blowing plastic balls through a straw! so a good day for sheila, then. her daughters still dont realise that heir mother will never sit down and eat a big plate of steak and chips and peas again. they still think their mother will resume her previous life. the younger daughter in particular looks forward to "a big christmas dinner with mam eating even more roast potaoes than usual". none of them including my husband have felt able to "Google" oesophageal cancer. maybe their right and im wrong, who knows? im just glad i prayed for Professor Broe all day on Monday im wandering now. hoping all of you have some good news and the blessingsof Our Lord this weekend. regards. cecilia.
It's true your mother-in law will not ever be able to eat all of a big steak and potatoes, but she will be able to eat some. I had my surgery in May 2008, and can. now eat almost anything in moderation. We went out to celebrate my husbands birthday last night. I ate a few bites of salad , a small peice of bread,a small baked potatoe, and half of a 12 oz steak. That was a lot to eat and I had no discomfort. As time goes on, appetite will return. She'll learn how to eat. Last night all had finished eating way before me: but I've learned to eat slow, chew a lot and wait for my small bites to go down. It has been worth the time to get to this point,because I do enjoy eating again.
It is good they are giving her the neccesary pain meds. She has been thru one of the worst surgeries, but healing will come.
Praying for her and family,
Sandra0 -
This comment has been removed by the Moderatormrsbyrne said:swallow test went well!
thanks be to the Sacred Heart of Jesus, sheila's swallow test went well today. Dr Brogan is professor Broe's second in command and he told paddy that if all goes well again tomorrow she may well start on soft solids on Sunday. however he still urges a lot of caution and insists that many things may still go wrong. but for now the family are elated, and who would take that away from them after all these months of despair? not i. all the tubes except the catheter are "out" and she seems to have been in rather less discomfort today, although absolutely shattered again after the swallow testing and some physiotherapy which involved blowing plastic balls through a straw! so a good day for sheila, then. her daughters still dont realise that heir mother will never sit down and eat a big plate of steak and chips and peas again. they still think their mother will resume her previous life. the younger daughter in particular looks forward to "a big christmas dinner with mam eating even more roast potaoes than usual". none of them including my husband have felt able to "Google" oesophageal cancer. maybe their right and im wrong, who knows? im just glad i prayed for Professor Broe all day on Monday im wandering now. hoping all of you have some good news and the blessingsof Our Lord this weekend. regards. cecilia.0 -
Sheilas Progress (or lack of it)unknown said:This comment has been removed by the Moderator
Hi William Sandi and all the other forumers!
Thank you so much for your continued interest and concern for people so far away, especially when you have all got your own worries and anxieties.
Well, where to start. Last Tuesday (post-op day 8) Sheila was moved out of the high dependency unit. Almost immediately she started to “mither” (harangue, harass, agitate) to go home. At first the medics refused. She had not yet had her staples removed she was still in constant pain and had eaten very little. But she is an adult and by Wednesday night they had given her the green light, much to the dismay of family members, not in the least her husband. Let me explain my parent-in-law home to you. There is no upstairs bathroom. In the bathroom there is no walk in shower. The bath itself is an old style 4 legged affair, difficult to get in and out of at the best of times. There is an electric shower over the bath but you will agree this is all very unsatisfactory. The stairs are steep; there is no heating upstairs. This is not due to lack of finances but a not inconsiderable amount of procrastination on both their parts. So well agree the house is not equipped for a sick person. No problem you might thin, especially when one of Dave’s sisters, Linda worked, in a former life, in a clerical capacity for the occupational therapy department. Well Linda was calling in all the favours she was ever owed and a former colleague was practically walking in the door with a commode, a bath chair some hand rails for the stairs etc. when Sheila found out and well all hell broke loose. “Im not an INVALID, get that stuff out of my house!” and out it went.
Another bone of contention was the suggestion that Sheila avail of her statutory entitlement to 2 weeks FREE” respite care” in a convalescent” home. I'm not sure whether these expressions are familiar to you all in US, but basically Sheila was entitled to go to a sort of half way house for a couple of weeks once she discharged herself from hospital despite what she thinks they are not hospitals or prisons or hospices (perish the thought) but cosy facilities with a discreet nursing presence where patients can come and go as they please, watch TV listen to the radio read a newspaper in the conservatory have visitors etc. This would have given paddy some time to get organised at home. You must be joking. No way. Convalescent homes are for the elderly and infirm. Not Sheila Byrne.
So home she arrived on Thursday morning and Im afraid when I rang to welcome her home she was quite clearly smoking a cigarette all the while complaining of continued exhaustion and constant pain. It’s hard to bite your tongue, isn’t it? She had eaten some tiramisu! And was, not surprisingly in my humble opinion feeling “a bit full”. The following morning she was reported as being “a bit under the weather”. However the public health nurse called as promised (Im sorry I don’t know the equivalent US term) called, changed her dressings had a little chat and she also expressed her concern about the bathroom facilities. She is calling again today and will come every day for 2 weeks. The family are hoping she will persuade Sheila to at lest have the commode.
Two topics are strictly out of bounds when calling for a chat. One is “what did you eat today?” this is met with “oh Im absolutely stuffed!” the other is “did you ever get the result of the biopsy?” this is met by a swift change of subject. However she did manage to tell me that she will have to attend for more chemo AND radiotherapy. The one session of chemo Sheila had almost killed her, so I don’t know how that will go. Well thanks for listening. Once again God Bless us all and look after us and Glory be to His Almighty presence in our lives.
regards
Cecilia0 -
This comment has been removed by the Moderatormrsbyrne said:Sheilas Progress (or lack of it)
Hi William Sandi and all the other forumers!
Thank you so much for your continued interest and concern for people so far away, especially when you have all got your own worries and anxieties.
Well, where to start. Last Tuesday (post-op day 8) Sheila was moved out of the high dependency unit. Almost immediately she started to “mither” (harangue, harass, agitate) to go home. At first the medics refused. She had not yet had her staples removed she was still in constant pain and had eaten very little. But she is an adult and by Wednesday night they had given her the green light, much to the dismay of family members, not in the least her husband. Let me explain my parent-in-law home to you. There is no upstairs bathroom. In the bathroom there is no walk in shower. The bath itself is an old style 4 legged affair, difficult to get in and out of at the best of times. There is an electric shower over the bath but you will agree this is all very unsatisfactory. The stairs are steep; there is no heating upstairs. This is not due to lack of finances but a not inconsiderable amount of procrastination on both their parts. So well agree the house is not equipped for a sick person. No problem you might thin, especially when one of Dave’s sisters, Linda worked, in a former life, in a clerical capacity for the occupational therapy department. Well Linda was calling in all the favours she was ever owed and a former colleague was practically walking in the door with a commode, a bath chair some hand rails for the stairs etc. when Sheila found out and well all hell broke loose. “Im not an INVALID, get that stuff out of my house!” and out it went.
Another bone of contention was the suggestion that Sheila avail of her statutory entitlement to 2 weeks FREE” respite care” in a convalescent” home. I'm not sure whether these expressions are familiar to you all in US, but basically Sheila was entitled to go to a sort of half way house for a couple of weeks once she discharged herself from hospital despite what she thinks they are not hospitals or prisons or hospices (perish the thought) but cosy facilities with a discreet nursing presence where patients can come and go as they please, watch TV listen to the radio read a newspaper in the conservatory have visitors etc. This would have given paddy some time to get organised at home. You must be joking. No way. Convalescent homes are for the elderly and infirm. Not Sheila Byrne.
So home she arrived on Thursday morning and Im afraid when I rang to welcome her home she was quite clearly smoking a cigarette all the while complaining of continued exhaustion and constant pain. It’s hard to bite your tongue, isn’t it? She had eaten some tiramisu! And was, not surprisingly in my humble opinion feeling “a bit full”. The following morning she was reported as being “a bit under the weather”. However the public health nurse called as promised (Im sorry I don’t know the equivalent US term) called, changed her dressings had a little chat and she also expressed her concern about the bathroom facilities. She is calling again today and will come every day for 2 weeks. The family are hoping she will persuade Sheila to at lest have the commode.
Two topics are strictly out of bounds when calling for a chat. One is “what did you eat today?” this is met with “oh Im absolutely stuffed!” the other is “did you ever get the result of the biopsy?” this is met by a swift change of subject. However she did manage to tell me that she will have to attend for more chemo AND radiotherapy. The one session of chemo Sheila had almost killed her, so I don’t know how that will go. Well thanks for listening. Once again God Bless us all and look after us and Glory be to His Almighty presence in our lives.
regards
Cecilia0
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