Need Quick advice

JackieA

Don't know what to do. Kind of in limbo. My husband has not been feeling well for about 2 or 3 weeks. He is started to sleep more. It goes and comes. He is sweating profusely at night, chest pain, pain in arm, hurts to cough- not a solid cough, along with more aches and pains. Diagnose Breast Cancer with mets to all bones.

Need advice on how to handle this. I want to call the dr. But he keeps telling me no, he is alright. However he is not up in the evening when I get home. He is in bed all day. He takes the meds before our dr visit, so he is always in a good mood. On Halaven and was doing okay for about 5 months, but now he is declining seemingly daily. I want to call the dr...he gets mad when I ask how he is doing.

If there is any advice, please help.

ddpekks

Wish I knew
Jackie, I wish I knew what to tell you, but I don't. I will tell you what I would do. If I felt like he was in preventable, unbearable pain, I would try to talk to the dr myself. I would seek his advise and relay that to my husband. If he got mad about it, so be it. If he chose not to do anything with the information, then I would know that I did what I could. To do nothing would drive me crazy.

As for the dr's visits, I treat my husband with a great deal of respect and I'm mindful of his feelings. I will keep quiet till I see that he is leaving something important out. Then I ask or describe whatever that is. I leave no stone unturned by the end of each visit. One time, I knew it was embarrassing my husband because I asked a very personal question, but when the dr started explaining it and giving solutions, he was thrilled that I asked. He even went so far as to apologize for that "dirty look" he gave me.

He keeps telling you he is alright, maybe he is. However, if you honestly do not think so and think there is something that can be done about it, then you may want to make that phone call.


Somebody tell this girl what to do.................
(((((((hugs)))))))
Deb

jimwins

I agree with Deb
I agreee with Deb.

Aches and pains and especially fevers can't just be "shrugged off"
when you're undergoing cancer treatment. It's best to be safe
than sorry here. I was hospitalized twice for a couple days during
my treatments due to fever over 101.5. Turns out it was nothing
serious but the nurses totally convinced me it was the right thing to do.

You can get all kinds of nasty things when your blood counts are low.
One nurse asked me "Would you rather spend a couple days here getting
IV antibiotics and be monitored or possibly end up in ICU for 2-3 weeks".
That sold me .

Not meaning to scare you and it could be nothing.

I hope everything is okay.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011
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Ginny_B

Sometimes the patient
Sometimes the patient doesn't want to make decisions or cause a fuss. It's hard for me to sit still and hear her tell the docs she's fine when at home she's in a bad way.

In your case, I would do whatever my gut tells me to do. I have been right every time I listen to my gut and those times when I didn't, I should have.

Hugs to you.

Noellesmom

call him on it, Jackie
What you are describing could be cardiac symptoms, Jackie. Every last one of them. Might not be related to the breast cancer. Could be a blood clot.

When my husband was being treated for throat cancer, he would try to tell the doctor that everything was fine, but I would pull my list of my pocket and start reeling off the issues he was having. And, of course, he would say he was going to bring those up but I knew better and so did the doctor.

Make an appointment, take him to the doctor, and get to the bottom of what is going on. Being a caregiver to our spouse means sometimes we have to be the parent to them, too: it would not bother you if your child got angry because you told their doctor about an important symptom. You have to be the same way about your husband. It is for his own good.

I know this is so hard. I am sorry y'all are going through this.

JackieA

Noellesmom said:

call him on it, Jackie
What you are describing could be cardiac symptoms, Jackie. Every last one of them. Might not be related to the breast cancer. Could be a blood clot.

When my husband was being treated for throat cancer, he would try to tell the doctor that everything was fine, but I would pull my list of my pocket and start reeling off the issues he was having. And, of course, he would say he was going to bring those up but I knew better and so did the doctor.

Make an appointment, take him to the doctor, and get to the bottom of what is going on. Being a caregiver to our spouse means sometimes we have to be the parent to them, too: it would not bother you if your child got angry because you told their doctor about an important symptom. You have to be the same way about your husband. It is for his own good.

I know this is so hard. I am sorry y'all are going through this.

when I got home
When I got home he was in the bed. I decided that I would tell his dr myself, because my husband will not tell them the truth. He will act like nothing is happening. I will check his bllod pressure in a minute. He says he is okay, but my gut tells me he is not. I can see it. His eyes are kind of bulging with dark circles. Everyday this week he has been in the bed. He tells me he is too tired to fix his plate. Well, my heart takes me back to May when he was so sick. He stayed in the hospital a week. I would rather know the truth than to guess. Thank you guys so much. I will let you know what's going on.

jimwins

JackieA said:

when I got home
When I got home he was in the bed. I decided that I would tell his dr myself, because my husband will not tell them the truth. He will act like nothing is happening. I will check his bllod pressure in a minute. He says he is okay, but my gut tells me he is not. I can see it. His eyes are kind of bulging with dark circles. Everyday this week he has been in the bed. He tells me he is too tired to fix his plate. Well, my heart takes me back to May when he was so sick. He stayed in the hospital a week. I would rather know the truth than to guess. Thank you guys so much. I will let you know what's going on.

Good luck
Good luck, Jackie. You're in my thoughts.
Keep us updated.

Hugs,

Jim

JackieA

jimwins said:

Good luck
Good luck, Jackie. You're in my thoughts.
Keep us updated.

Hugs,

Jim

I guess I did the wrong thing
Well I called the dr., talked him going and it turned into a big fight. He made it look like I was crazy. Everything I told the dr, he minimized it and acted like nothing was going on. He has lost 10 pounds in a week. We are going for a pet/ ct next week. He is mad at me for telling people who check on him that he is not feeling well. So now he is trying so hard to make me out of a lie to everyone that calls and checks on him. I am frustrated. I know he is scared--He told me. Anyway, any more advice?

ddpekks

JackieA said:

I guess I did the wrong thing
Well I called the dr., talked him going and it turned into a big fight. He made it look like I was crazy. Everything I told the dr, he minimized it and acted like nothing was going on. He has lost 10 pounds in a week. We are going for a pet/ ct next week. He is mad at me for telling people who check on him that he is not feeling well. So now he is trying so hard to make me out of a lie to everyone that calls and checks on him. I am frustrated. I know he is scared--He told me. Anyway, any more advice?

Don't fight with him.....
Life is too short. You did the right thing. You are being pro-active in his care, whether he wants you to or not. Don't argue with him. Agree with him and comfort him and try to calm some of his fears......but continue on your journey to help him. Losing 10 lbs in a week is "something" that needs to be addressed.

Don't worry about what you look like in front of him and his dr. Let him tell the dr whatever he wants to. The dr will see through it because he's trained to see it. Continue delivering the facts and the dr will sort through it all.

You are doing the best you can, so take a deep breath and trudge on. We are here for you.

Deb

jimwins

JackieA said:

I guess I did the wrong thing
Well I called the dr., talked him going and it turned into a big fight. He made it look like I was crazy. Everything I told the dr, he minimized it and acted like nothing was going on. He has lost 10 pounds in a week. We are going for a pet/ ct next week. He is mad at me for telling people who check on him that he is not feeling well. So now he is trying so hard to make me out of a lie to everyone that calls and checks on him. I am frustrated. I know he is scared--He told me. Anyway, any more advice?

If your husband is isolating
If your husband is isolating himself and his true feelings from you,
perhaps he can open up to someone else? That is no offense toward you.
Sometimes it's easier to talk to others or strangers in the same boat
as you see we do here frequently.

Maybe he's stuck in the process of coping and could use some help.
Counseling might be an option as well. You are doing the right thing
and the best you can to care for your husband.

When you're dealing with this, it's easy to lash out and be nasty with
those who are close to you. I've done it. Please don't take that
personally - blame it on the cancer.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011

JackieA

jimwins said:

If your husband is isolating
If your husband is isolating himself and his true feelings from you,
perhaps he can open up to someone else? That is no offense toward you.
Sometimes it's easier to talk to others or strangers in the same boat
as you see we do here frequently.

Maybe he's stuck in the process of coping and could use some help.
Counseling might be an option as well. You are doing the right thing
and the best you can to care for your husband.

When you're dealing with this, it's easy to lash out and be nasty with
those who are close to you. I've done it. Please don't take that
personally - blame it on the cancer.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011

The Saga continued today
Today when I got home it was part 2. There has been a decline in my husband's health in the past few weeks. I see him getting weaker. He sleeps more. I told him today about how he minimizes the symptoms and that he knew that he was weak all along. I am so frustrated. I have never been on this level of frustration. I feel like he is angry--so angry toward me. Having lost my mother in January...I watched her decline same way. I am trying to be proactive. Frustration is the only word I can think of right now. I want to scream. I was my mother's punching bag in her last few months. As I reflect, I realize my mother did me the same way. I have to be careful, I guess and not cause him to be frustrated like my mom. She said I acted like she was a child by talking for her. When she was in the hospital I tried to be her advocate, but she often felt like a child. I knew the questions to ask, I had been going through this first hand with my husband, but I also knew her situation...did the researched and believed myself to be well versed in her colon cancer etc. I feel the same way with my husband. I think my husband has a strong case of denial. He would rather not they even ask him any questions, just juice him up, and let him go. What my mind tells me is that this is just a pattern of behavior with my husband because when he was diagnosed the first time, he ignored all of his symptoms. He had a lump, his nipple crusted over, and inverted before he would admit that something was something was wrong. The second time his bone in his chest popped, ribs hurt, lost over 60 pounds at that time, before he would admit that something was wrong, and then he blamed it on a tournament he was in. So I really do understand things now.

Noellesmom

JackieA said:

The Saga continued today
Today when I got home it was part 2. There has been a decline in my husband's health in the past few weeks. I see him getting weaker. He sleeps more. I told him today about how he minimizes the symptoms and that he knew that he was weak all along. I am so frustrated. I have never been on this level of frustration. I feel like he is angry--so angry toward me. Having lost my mother in January...I watched her decline same way. I am trying to be proactive. Frustration is the only word I can think of right now. I want to scream. I was my mother's punching bag in her last few months. As I reflect, I realize my mother did me the same way. I have to be careful, I guess and not cause him to be frustrated like my mom. She said I acted like she was a child by talking for her. When she was in the hospital I tried to be her advocate, but she often felt like a child. I knew the questions to ask, I had been going through this first hand with my husband, but I also knew her situation...did the researched and believed myself to be well versed in her colon cancer etc. I feel the same way with my husband. I think my husband has a strong case of denial. He would rather not they even ask him any questions, just juice him up, and let him go. What my mind tells me is that this is just a pattern of behavior with my husband because when he was diagnosed the first time, he ignored all of his symptoms. He had a lump, his nipple crusted over, and inverted before he would admit that something was something was wrong. The second time his bone in his chest popped, ribs hurt, lost over 60 pounds at that time, before he would admit that something was wrong, and then he blamed it on a tournament he was in. So I really do understand things now.

not an easy place
Your husband has put you in a difficult spot, Jackie, and I'm sorry for that. I agree with you that things don't sound good.

Sometimes, as hard as it is, we have to admit that the patient calls the shots, no matter how much we want to step up for them.

If this is how he truly wants things to go, there's nothing you can do to change his mind - it has to come from inside of him. Maybe this has always been his personality and it is just doubly hard for you to watch now, especially just having lost your mom.

Lots of hugs, Jackie. Come back and let us know how things are going.

JackieA

Noellesmom said:

not an easy place
Your husband has put you in a difficult spot, Jackie, and I'm sorry for that. I agree with you that things don't sound good.

Sometimes, as hard as it is, we have to admit that the patient calls the shots, no matter how much we want to step up for them.

If this is how he truly wants things to go, there's nothing you can do to change his mind - it has to come from inside of him. Maybe this has always been his personality and it is just doubly hard for you to watch now, especially just having lost your mom.

Lots of hugs, Jackie. Come back and let us know how things are going.

Noellesmom
I know I get frustrated, but I am good. Since Thursday, he has declined tremendously. He has not come out of the bed. He has not eaten. My baby has not had a bowel movement in 2 or 3 weeks. He has just been in the bed. He has a pain in his side. i don't know what to do. We have a pet and CT scan Tuesday so keep us in prayer. My guts tell me that his cancer is spreading. He is on halaven...he did good for a while now, I don't know.

LeeandShirley

JackieA said:

Noellesmom
I know I get frustrated, but I am good. Since Thursday, he has declined tremendously. He has not come out of the bed. He has not eaten. My baby has not had a bowel movement in 2 or 3 weeks. He has just been in the bed. He has a pain in his side. i don't know what to do. We have a pet and CT scan Tuesday so keep us in prayer. My guts tell me that his cancer is spreading. He is on halaven...he did good for a while now, I don't know.

Advice
Not an easy row to hoe, Jackie, but you need to step back, relax and wait for the tests to answer your questions. He may be declining, but you need to let him handle it his way. And you need to take care of yourself. If your gut IS right and his cancer is spreading, there's little you can do about that fact. All you can do is be his best friend for the time you have left with him. He does sound "sick" or he may just be depressed. Let the doctors do their thing and you just be his loving wife. Stop trying to control whats happening because we are not really in control of anything when it comes to cancer. Sorry if I sound like I'm preaching, but I'm just trying to help you relax and learn to go with the flow of "your husband's" illness, without getting yourself all stressed out. Sending loving thoughts and prayers for the best outcome of the tests.
Shirley

Noellesmom

JackieA said:

Noellesmom
I know I get frustrated, but I am good. Since Thursday, he has declined tremendously. He has not come out of the bed. He has not eaten. My baby has not had a bowel movement in 2 or 3 weeks. He has just been in the bed. He has a pain in his side. i don't know what to do. We have a pet and CT scan Tuesday so keep us in prayer. My guts tell me that his cancer is spreading. He is on halaven...he did good for a while now, I don't know.

prayers
The not eating part - is he consuming liquids? Dehydration is not going to help any of the things that are going on.

No bowel movement - dependent on the cause for this, it may be as simple as getting a shot.

I know you have the tests Tuesday but his doctors really need a heads up on how you think he is doing come Monday morning. He may need to be hospitalized at least to get some iv fluids going.

Hugs, Jackie. Let us know how things are going.

Barbara53

LeeandShirley said:

Advice
Not an easy row to hoe, Jackie, but you need to step back, relax and wait for the tests to answer your questions. He may be declining, but you need to let him handle it his way. And you need to take care of yourself. If your gut IS right and his cancer is spreading, there's little you can do about that fact. All you can do is be his best friend for the time you have left with him. He does sound "sick" or he may just be depressed. Let the doctors do their thing and you just be his loving wife. Stop trying to control whats happening because we are not really in control of anything when it comes to cancer. Sorry if I sound like I'm preaching, but I'm just trying to help you relax and learn to go with the flow of "your husband's" illness, without getting yourself all stressed out. Sending loving thoughts and prayers for the best outcome of the tests.
Shirley

you said it girl
Shirley, I have been on these boards a long time as my mother's caregiver, and yours is some of the wisest advice I have ever read in any thread, anywhere, anytime. Thank you.

JackieA

Noellesmom said:

prayers
The not eating part - is he consuming liquids? Dehydration is not going to help any of the things that are going on.

No bowel movement - dependent on the cause for this, it may be as simple as getting a shot.

I know you have the tests Tuesday but his doctors really need a heads up on how you think he is doing come Monday morning. He may need to be hospitalized at least to get some iv fluids going.

Hugs, Jackie. Let us know how things are going.

ok
Had a bm today. Yea! but still in bed. Well, it is very obvious that I am not in control. One hand I get advice to take control, then, I hear stop trying to control. Well, I do know who is in control, so I will trust Him. Will let you know status later. Thanks for prayers, everyone, and have a good one. I appreciate all advice.