Yeah it's Sal,I really need your input, please!
I am So Sad,and I think of our Chantal......I wish I had her graceful ways! I think of our Lee..........and Chemo Eric Too....
Signing off....
Your Sal
Comments
-
Loretta said it all
You go, Loretta! You took the words out of my mouth.
Sal - from our recent medical experience, we found the nurses to be more in tune with the patient than the docs were. Tell your husband, he may be a doc and have the knowledge, but as a nurse, you understand the human side of things. Book knowledge is not all that's required here.
Don't change what you're doing because of him. Continue to gain information, get a solid understanding, ask your questions - your husband will follow you. He may grouse a bit. Just tune that out as best you can!
With much love and hugs,
Terry0 -
I hear you!
Oh Sal –
I hear and feel your pain and frustration. My husband was very much the same way. I feel like I’ve “owned” his cancer far more than he has. It seems, at times, that he just floats along in oblivion. But in some ways I think his denial has what’s kept him going for 25 months after being diagnosed at stage 4. His philosophy is that the doctor, the nurse or I will tell him what he needs to know, when he needs to know it. In the end, I think it’s about control. He can’t control the cancer’s hold on his body but he can control the hold that cancer has on his mind. Denial is his way of doing so. In the same way, I can’t control Chad’s denial but I can control my response to his denial.
And I’ve dealt with his cancer in my own way. I do the research, I read a number of EC lists, I’ve worked with the media on awareness. Before his appointments, I tell him the things what I have questions about. He can ask the questions if he chooses but if he doesn’t, he knows I’m going to ask them. He can be mad all he wants – I’m passed the point of caring.
Has your husband authorized you as a person the medical team can talk to about his condition? If not, try to get him to do so. This will enable you to call or email his doctor and ask those questions if you aren’t able to during the appointments. Does your husband have a patient care coordinator at the clinic? They, too, can be an incredible resource for you.
I pray, in time, you and your husband will find a way to navigate this difficult path – perhaps in different ways, but together as a strong team.
Mary
Caregiver to Chad
Diagnosed in October 2009 at stage 4a0 -
some men just deal with cancer differentlymruble said:I hear you!
Oh Sal –
I hear and feel your pain and frustration. My husband was very much the same way. I feel like I’ve “owned” his cancer far more than he has. It seems, at times, that he just floats along in oblivion. But in some ways I think his denial has what’s kept him going for 25 months after being diagnosed at stage 4. His philosophy is that the doctor, the nurse or I will tell him what he needs to know, when he needs to know it. In the end, I think it’s about control. He can’t control the cancer’s hold on his body but he can control the hold that cancer has on his mind. Denial is his way of doing so. In the same way, I can’t control Chad’s denial but I can control my response to his denial.
And I’ve dealt with his cancer in my own way. I do the research, I read a number of EC lists, I’ve worked with the media on awareness. Before his appointments, I tell him the things what I have questions about. He can ask the questions if he chooses but if he doesn’t, he knows I’m going to ask them. He can be mad all he wants – I’m passed the point of caring.
Has your husband authorized you as a person the medical team can talk to about his condition? If not, try to get him to do so. This will enable you to call or email his doctor and ask those questions if you aren’t able to during the appointments. Does your husband have a patient care coordinator at the clinic? They, too, can be an incredible resource for you.
I pray, in time, you and your husband will find a way to navigate this difficult path – perhaps in different ways, but together as a strong team.
Mary
Caregiver to Chad
Diagnosed in October 2009 at stage 4a
Dear Sal,
What Loretta and Mary have said is so wise. You need to be on the team with the drs understanding that your hubby's coping is major denial. My hubby understood my cancer after I had to keep explaining it to him and it still took a month for him to be able to deal with it and even say the words that I had cancer. So many men and we have seen more than one on this board react in anger and lash out at the closest person to them, the wife. I would just like to add one more suggestion to Mary's about getting the permission to be on the list of people who can discuss his case with the drs and it is this ask for a written summary of their findings ask the drs to make it clear in this paper what his staging is and what treatment is recommended. I was stage III with 1 bad node and then one bad one found during surgery, there was never a between stages told to me. I did go from originally being thought to be in situ (very early) to Stage II to Stage III after the EUS. Maybe you need to tell the drs to make their statements very clear when speaking to your husband. Many people shut their minds off when they hear disturbing news. I saw my Mom do that when the dr said my Dad had about 6 more weeks. Later she could not remember what the dr said. So be angry and vent but realize that anger many times is extreme fear coming out. Wishing you better times, take care,
Donna700 -
We will listen...Donna70 said:some men just deal with cancer differently
Dear Sal,
What Loretta and Mary have said is so wise. You need to be on the team with the drs understanding that your hubby's coping is major denial. My hubby understood my cancer after I had to keep explaining it to him and it still took a month for him to be able to deal with it and even say the words that I had cancer. So many men and we have seen more than one on this board react in anger and lash out at the closest person to them, the wife. I would just like to add one more suggestion to Mary's about getting the permission to be on the list of people who can discuss his case with the drs and it is this ask for a written summary of their findings ask the drs to make it clear in this paper what his staging is and what treatment is recommended. I was stage III with 1 bad node and then one bad one found during surgery, there was never a between stages told to me. I did go from originally being thought to be in situ (very early) to Stage II to Stage III after the EUS. Maybe you need to tell the drs to make their statements very clear when speaking to your husband. Many people shut their minds off when they hear disturbing news. I saw my Mom do that when the dr said my Dad had about 6 more weeks. Later she could not remember what the dr said. So be angry and vent but realize that anger many times is extreme fear coming out. Wishing you better times, take care,
Donna70
I am so sorry that you are dealing with those frustrations. I agree, do whatever you need to do to get the information. And move forward.
I agree with what Donna said, emotions can mask fears and other emotions. Vent to us, breathe and keep pushing on the best you can.
Beth0 -
Well... maybe I am the Dummyunknown said:This comment has been removed by the Moderator
During his radiation yesterday, he stated to his Radiation Onco, I do not want the surgey! Doc, said after you finish up these treatments we can monitor your body, if the cancer pops up again, we will treat with more Chemo/radiation.
From what I read this cancer can become resistant to chemo... he will soon be a stage 4.
I will post every now and again. Perhaps, this experience (post) can help other EC victims...WHAT NOT TO DO...This is a real nasty disease one should take every effort to save their life...ask questions.. be proactive. I will post updates in the hopes that if any other ec victim Stage III is living in denial, they can read about this experience the outcome, and the reality of this disease.
So now what.. I watch my husband slowly die,... as the cancer will come back and probably in force. I will keep you guys updated.
Sal0 -
Hi Terry!TerryV said:Loretta said it all
You go, Loretta! You took the words out of my mouth.
Sal - from our recent medical experience, we found the nurses to be more in tune with the patient than the docs were. Tell your husband, he may be a doc and have the knowledge, but as a nurse, you understand the human side of things. Book knowledge is not all that's required here.
Don't change what you're doing because of him. Continue to gain information, get a solid understanding, ask your questions - your husband will follow you. He may grouse a bit. Just tune that out as best you can!
With much love and hugs,
Terry
Terry, I am going to make my self sick if I keep trying to fight a battle that is not mine to fight. All I can do is provide info...advocate... to what a deaf ear. Sounds mean...I know.
I am very angry at this point.
Sal0 -
Thank you for your kindness and understandingmruble said:I hear you!
Oh Sal –
I hear and feel your pain and frustration. My husband was very much the same way. I feel like I’ve “owned” his cancer far more than he has. It seems, at times, that he just floats along in oblivion. But in some ways I think his denial has what’s kept him going for 25 months after being diagnosed at stage 4. His philosophy is that the doctor, the nurse or I will tell him what he needs to know, when he needs to know it. In the end, I think it’s about control. He can’t control the cancer’s hold on his body but he can control the hold that cancer has on his mind. Denial is his way of doing so. In the same way, I can’t control Chad’s denial but I can control my response to his denial.
And I’ve dealt with his cancer in my own way. I do the research, I read a number of EC lists, I’ve worked with the media on awareness. Before his appointments, I tell him the things what I have questions about. He can ask the questions if he chooses but if he doesn’t, he knows I’m going to ask them. He can be mad all he wants – I’m passed the point of caring.
Has your husband authorized you as a person the medical team can talk to about his condition? If not, try to get him to do so. This will enable you to call or email his doctor and ask those questions if you aren’t able to during the appointments. Does your husband have a patient care coordinator at the clinic? They, too, can be an incredible resource for you.
I pray, in time, you and your husband will find a way to navigate this difficult path – perhaps in different ways, but together as a strong team.
Mary
Caregiver to Chad
Diagnosed in October 2009 at stage 4a
Yes he does have a patient coordinator, the nurses are loyal to drs recomendations. We have spoken with regards as my authorization regarding his medical care in the event he becomes incapacitated (mentally not having the capacity to make decisions.) wow.. we might already be there:).
Sal0 -
Donna..Donna70 said:some men just deal with cancer differently
Dear Sal,
What Loretta and Mary have said is so wise. You need to be on the team with the drs understanding that your hubby's coping is major denial. My hubby understood my cancer after I had to keep explaining it to him and it still took a month for him to be able to deal with it and even say the words that I had cancer. So many men and we have seen more than one on this board react in anger and lash out at the closest person to them, the wife. I would just like to add one more suggestion to Mary's about getting the permission to be on the list of people who can discuss his case with the drs and it is this ask for a written summary of their findings ask the drs to make it clear in this paper what his staging is and what treatment is recommended. I was stage III with 1 bad node and then one bad one found during surgery, there was never a between stages told to me. I did go from originally being thought to be in situ (very early) to Stage II to Stage III after the EUS. Maybe you need to tell the drs to make their statements very clear when speaking to your husband. Many people shut their minds off when they hear disturbing news. I saw my Mom do that when the dr said my Dad had about 6 more weeks. Later she could not remember what the dr said. So be angry and vent but realize that anger many times is extreme fear coming out. Wishing you better times, take care,
Donna70
Thank you for your compassion. I was there when Doc said stage III T3N10.
I asked him how can they treat you with out knowing what stage you are? I plan to attend his postchemo/rad PET consultation. I plan to ask them what is the standard of Care (again) for EC. Is this THEIR standard of care. WHAT IS THEIR RECOMMENDATIONS. Does their treatment recommendations concur with other facilities that specailize in EC cancer? What outcome are they expecting? Many many more questions.
I have records of every test and their findings. This information is in hudbands briefcase that he takes with him every day to treatment.
He also has had very minimal side affects of his treatment, the doctors are flabbergasted. I think this nurtures is denail in someway
Donna, I am so glad that you are doing well. I thank you for your response.
So times I feel so alone.
Sal0 -
You said it right, DonnaDonna70 said:some men just deal with cancer differently
Dear Sal,
What Loretta and Mary have said is so wise. You need to be on the team with the drs understanding that your hubby's coping is major denial. My hubby understood my cancer after I had to keep explaining it to him and it still took a month for him to be able to deal with it and even say the words that I had cancer. So many men and we have seen more than one on this board react in anger and lash out at the closest person to them, the wife. I would just like to add one more suggestion to Mary's about getting the permission to be on the list of people who can discuss his case with the drs and it is this ask for a written summary of their findings ask the drs to make it clear in this paper what his staging is and what treatment is recommended. I was stage III with 1 bad node and then one bad one found during surgery, there was never a between stages told to me. I did go from originally being thought to be in situ (very early) to Stage II to Stage III after the EUS. Maybe you need to tell the drs to make their statements very clear when speaking to your husband. Many people shut their minds off when they hear disturbing news. I saw my Mom do that when the dr said my Dad had about 6 more weeks. Later she could not remember what the dr said. So be angry and vent but realize that anger many times is extreme fear coming out. Wishing you better times, take care,
Donna70
Some people handle it differently. My. Other half was stage 2b before and after the surgery. Now he is in "complete remission". He, however is completely convinced that he is dying and has chosen to fill his days with alcohol. He buys a case at a time...the Busch brothers.......you know.....Busch lite and Busch regular). If he wakes up in the morning and there is less than 12 in the fridge then he has to make a run to the liquor store. It is very sad. I am grieving because I have lost my beat friend of forty years bot to cancer, but to alcoholism. I too am very angry and frustrated and helpless. I must just sit and watch him destroy himself. Most days it is more than I can handle. If anyone has any words of wisdom, I am all ears.0 -
Oh Sal....Wife of patient 50378 said:Well... maybe I am the Dummy
During his radiation yesterday, he stated to his Radiation Onco, I do not want the surgey! Doc, said after you finish up these treatments we can monitor your body, if the cancer pops up again, we will treat with more Chemo/radiation.
From what I read this cancer can become resistant to chemo... he will soon be a stage 4.
I will post every now and again. Perhaps, this experience (post) can help other EC victims...WHAT NOT TO DO...This is a real nasty disease one should take every effort to save their life...ask questions.. be proactive. I will post updates in the hopes that if any other ec victim Stage III is living in denial, they can read about this experience the outcome, and the reality of this disease.
So now what.. I watch my husband slowly die,... as the cancer will come back and probably in force. I will keep you guys updated.
Sal
I am so sorry for the pain you must be going through knowing that your husband has options but is making the choice not to pursue.
My husband is sitting beside me and I told him of your husband's choice. He said, "You know, I considered not having the surgery. I didn't want it either. But, it's just too scary not to have surgery. Making the choice not to have surgery when it's an option is just silly."
I hope your husband chooses to become fully informed about this beast that he is facing and makes his his decisions based on knowledge. Not on emotion or feelings. I do hope he reconsiders his choice.....
Best to you, Sal! Please let us know how we can help *you*
Terry0 -
I understand your painmlbrooks852 said:You said it right, Donna
Some people handle it differently. My. Other half was stage 2b before and after the surgery. Now he is in "complete remission". He, however is completely convinced that he is dying and has chosen to fill his days with alcohol. He buys a case at a time...the Busch brothers.......you know.....Busch lite and Busch regular). If he wakes up in the morning and there is less than 12 in the fridge then he has to make a run to the liquor store. It is very sad. I am grieving because I have lost my beat friend of forty years bot to cancer, but to alcoholism. I too am very angry and frustrated and helpless. I must just sit and watch him destroy himself. Most days it is more than I can handle. If anyone has any words of wisdom, I am all ears.
mlbrooks,
I am so sorry that you are dealing with not only EC but also alcoholism. My husband was diagnosed with stage 2b EC and he has a fighting attitude and is not a drinker at all. But, my mother has been an alcoholic since I was 10 years old, it has been very challenging for me over the years. She has had many years of being a functioning alcoholic, but unfortunately after my husbands diagnosis she began to drink very heavily. All during treatments she was in and out of the hospital going through multiple withdrawals. There were days that I would be with Jeff at chemo and then go to the ER to pick her up and take her home because she didn't have enough money for a cab. As sad as this sounds, and I am sure this make me sound like a terrible daughter. I told her I could no longer deal with her disease and Jeff's at the same time, and that Jeff was my world and I chose him. I have spoke about four words to her since Jeff's surgery. We do not plan on spending the holidays together. I do not share this story to make anyone feel sorry for me, I have been the adult child of an alcoholic for many years, I just wanted to let you know that I get what it feels like to have an alcoholic in the family. They can be demonstratively manipulative and leave you feeling like the bad person. Please know that you are a good person, that you have showed your husband love and compassion and it is ok to be dissapointed in him. I hope for both of you that he will seek help with his addiction. Maybe he should speak with a counselor, he could be self medicating survivor guilt. I am hear to listen if you need that.
Niki0 -
Hello SalWife of patient 50378 said:Thank you for your kindness and understanding
Yes he does have a patient coordinator, the nurses are loyal to drs recomendations. We have spoken with regards as my authorization regarding his medical care in the event he becomes incapacitated (mentally not having the capacity to make decisions.) wow.. we might already be there:).
Sal
Hi Sal,
I'm a carer too and it is so very difficult at times. At first I didn't know what to do, but now I feel that i'm handling it a little better.
Your husband sounds dreadfully afraid to me and how sad to be in that position when it is usually him that makes decisions about other peoples lives. If he is on the inside of medical knowledge then his fears must be very much greater than most of ours as he already knows what's coming. Please try not to judge him Sal. Try walking a mile in his mocassins and see how scared you would become. He is going to have to face it sooner or later and if you can find it in your heart to put your arms around him and be gentle, it would make life a bit easier for you wouldn't it. Rant all you want on here if it helps and we will all understand where you are coming from and try to help if we can.
He will see the folly of behaving the way he is behaving, but just at the moment, he is finding it difficult to accept the diagnosis and finding his strength in denial.
I know we carer's need the patience of a saint. But I also know that he is afraid Sal.
Cuddle him even more and hope he soon can cope a bit better.
Prayers and hugs,
Marci X0 -
Hello SalWife of patient 50378 said:Thank you for your kindness and understanding
Yes he does have a patient coordinator, the nurses are loyal to drs recomendations. We have spoken with regards as my authorization regarding his medical care in the event he becomes incapacitated (mentally not having the capacity to make decisions.) wow.. we might already be there:).
Sal
Hi Sal,
I'm a carer too and it is so very difficult at times. At first I didn't know what to do, but now I feel that i'm handling it a little better.
Your husband sounds dreadfully afraid to me and how sad to be in that position when it is usually him that makes decisions about other peoples lives. If he is on the inside of medical knowledge then his fears must be very much greater than most of ours as he already knows what's coming. Please try not to judge him Sal. Try walking a mile in his mocassins and see how scared you would become. He is going to have to face it sooner or later and if you can find it in your heart to put your arms around him and be gentle, it would make life a bit easier for you wouldn't it. Rant all you want on here if it helps and we will all understand where you are coming from and try to help if we can.
He will see the folly of behaving the way he is behaving, but just at the moment, he is finding it difficult to accept the diagnosis and finding his strength in denial.
I know we carer's need the patience of a saint. But I also know that he is afraid Sal.
Cuddle him even more and hope he soon can cope a bit better.
Prayers and hugs,
Marci X0 -
This comment has been removed by the Moderatormlbrooks852 said:You said it right, Donna
Some people handle it differently. My. Other half was stage 2b before and after the surgery. Now he is in "complete remission". He, however is completely convinced that he is dying and has chosen to fill his days with alcohol. He buys a case at a time...the Busch brothers.......you know.....Busch lite and Busch regular). If he wakes up in the morning and there is less than 12 in the fridge then he has to make a run to the liquor store. It is very sad. I am grieving because I have lost my beat friend of forty years bot to cancer, but to alcoholism. I too am very angry and frustrated and helpless. I must just sit and watch him destroy himself. Most days it is more than I can handle. If anyone has any words of wisdom, I am all ears.0 -
Funny you should mention Florifa. We are in Gulf Shoresunknown said:This comment has been removed by the Moderator
For the weekend. Came down here thinking we could get away from our cousins the Busch twins. They followed right behind us. Thank you, Loretta and Nikki for your words of encouragement. It is nice to know I'm not completely alone in the battle. I have completely given up hope that our circumstances will change, I am just working to find ways to cope with it. I am a full time nurse and I am finding that I have less patience dealing with Dale than my patients at work. That is very sad for us. Sorry Sal for horning in on your thread. I just felt your frustration, just in a different way'0 -
Marci, I appreciate you words of wisdommardigras said:Hello Sal
Hi Sal,
I'm a carer too and it is so very difficult at times. At first I didn't know what to do, but now I feel that i'm handling it a little better.
Your husband sounds dreadfully afraid to me and how sad to be in that position when it is usually him that makes decisions about other peoples lives. If he is on the inside of medical knowledge then his fears must be very much greater than most of ours as he already knows what's coming. Please try not to judge him Sal. Try walking a mile in his mocassins and see how scared you would become. He is going to have to face it sooner or later and if you can find it in your heart to put your arms around him and be gentle, it would make life a bit easier for you wouldn't it. Rant all you want on here if it helps and we will all understand where you are coming from and try to help if we can.
He will see the folly of behaving the way he is behaving, but just at the moment, he is finding it difficult to accept the diagnosis and finding his strength in denial.
I know we carer's need the patience of a saint. But I also know that he is afraid Sal.
Cuddle him even more and hope he soon can cope a bit better.
Prayers and hugs,
Marci X
Maybe it is the fear. I just find myself so fustrated, he usually takes an issue or problem head on. His behavior is so out of character. He is not ignorant as some posters have stated.
My only outlet is here on this board. My emotions are all over the place. Because I am scared.
Our home is a peaceful one, I do not engage even.. if he becomes crabby, he has enough to deal with. I keep my emotional rants and raves here, I do not have any other outlet.
I still try to make him laugh...and yes I hold his hand...he has become very quiet as of lately. I cannot imagine my life without him.
I have taken your thoughts to heart Marci. Thank you for provding me a new perspective.
Sal0 -
husbands denial
My husband was diagnosed with Stage IIB(T2N1M0) last April following a rountine screening because of long term use of Proton Pump inhibiters. He too took what he wanted from the discussions with the doctor. Following the EU he went around telling everyone that it was stage one (1 node.) I didn"t have the heart to tell him the truth. It buoyed him up so much to believe it was Stage 1. Docs seem to have gone along at that point too. Oncologist told him standard of care was Chemo, radiation, Surgery for his stage of cancer, he only bought into the chemo radiation portion of treatment, then we would see about surgery. He refuses to get on any support sites or take advantage of support groups he"s been offered. He just doesn"t seem to want the information. (For me information is POWER) I on the other hand have read everything, searched the internet, and sometimes just about had the pants scared off of me! So in some ways maybe his is the better way.
Thank the lord he has completed chemo, radiation, and surgery. The surgeon had to get a little tough and back me up, because he made noises like he might forgo the surgery. Surgeon told him, that is fine, but you will be back to me with the same issue. I might not be able to do as much then, especially if you develope mets. This is your best bet of remaining cancer free. Following surgery, the pathology report took a week. When doc read him results (NO CANCER) he said, Why did I have to have the surgery then?
Now he is recovering from surgery. Still has feeding tube (2 1/2 mos. postsurg). Hoping in next few weeks that he can increase intake to about 1200 to 1500 calories so that we can d/c j-tube. My heart goes out to you. Know you are not alone.0 -
Suezue,suezque1214 said:husbands denial
My husband was diagnosed with Stage IIB(T2N1M0) last April following a rountine screening because of long term use of Proton Pump inhibiters. He too took what he wanted from the discussions with the doctor. Following the EU he went around telling everyone that it was stage one (1 node.) I didn"t have the heart to tell him the truth. It buoyed him up so much to believe it was Stage 1. Docs seem to have gone along at that point too. Oncologist told him standard of care was Chemo, radiation, Surgery for his stage of cancer, he only bought into the chemo radiation portion of treatment, then we would see about surgery. He refuses to get on any support sites or take advantage of support groups he"s been offered. He just doesn"t seem to want the information. (For me information is POWER) I on the other hand have read everything, searched the internet, and sometimes just about had the pants scared off of me! So in some ways maybe his is the better way.
Thank the lord he has completed chemo, radiation, and surgery. The surgeon had to get a little tough and back me up, because he made noises like he might forgo the surgery. Surgeon told him, that is fine, but you will be back to me with the same issue. I might not be able to do as much then, especially if you develope mets. This is your best bet of remaining cancer free. Following surgery, the pathology report took a week. When doc read him results (NO CANCER) he said, Why did I have to have the surgery then?
Now he is recovering from surgery. Still has feeding tube (2 1/2 mos. postsurg). Hoping in next few weeks that he can increase intake to about 1200 to 1500 calories so that we can d/c j-tube. My heart goes out to you. Know you are not alone.
Yes, I am experiencing the same thing. I wondered if the Dr. are just going along with husband (his denial) until Rad/chemo is over? My husband will not join a support site either, it is his choice, I respect that. He disscusses his cancer treatments, his weight gain (he has gained over ten pounds since starting treatment)and difficulty swallowing every day. I just listen and show compassion. He does not like to touch on any topics other than Rad/chemo. only the now.
It sounds like your husband is doing well, Where did he have his surgery ? and What type of surgery.....if you do not mind me asking?
Suezue, thanks for chiming in! I appreciate your willingness to share your experience.
Sal0
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