Colon cancer metastasized to lungs: Husband severely depressed

Posted by lah @lah, Jul 1 6:53pm

hi all. Haven’t been here for a while, although have been thinking about coming back. My husband was diagnosed with colon cancer 6 1/2 years ago. His cancer metastasized to both of his lungs 3 years into this nightmare. He has been on every treatment program for colon cancer, all the chemos, and immunotherapy. He is on a chemo with an immunotherapy treatment right now. Dr did the test and found out he has the wild kras gene.
I’m not sure I am saying all this correctly. Because I feel like I’ve been in a whirlwind totally helpless. He had a PET scan yesterday dr told us the treatment plan is working. still ! He will have 6 more treatments then another PET scan. If it is good they will do a lung biopsy and take out the biggest one. My question is any other caregivers dealing with the patient being severely depressed? It’s getting worse. Sometimes He’s like jekyll and hyde! Is this normal side effects?

Liked by fiesty76

Hi @lah, I added your discussion to the Caregivers group as well. I believe there are other caregivers here who are all too familiar with the emotional side of advanced cancer – for both of you.

Lah, you describe the situation as feeling like a whirlwind and that you feel totally helpless. Can you tell me a bit more about those 2 things? Has it been the treatments, tests, and in and out of the hospital that has been a whirlwind? Or has it been the results and decisions you've had to make? Or all of the above?

How does your husband feel about continuing treatment?

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@colleenyoung

Hi @lah, I added your discussion to the Caregivers group as well. I believe there are other caregivers here who are all too familiar with the emotional side of advanced cancer – for both of you.

Lah, you describe the situation as feeling like a whirlwind and that you feel totally helpless. Can you tell me a bit more about those 2 things? Has it been the treatments, tests, and in and out of the hospital that has been a whirlwind? Or has it been the results and decisions you've had to make? Or all of the above?

How does your husband feel about continuing treatment?

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Thank you for your response .
The whirlwind feeling is of life flying by and I know life will never be the same as it was pre cancer. Probably just feeling sorry for myself. Plus the fact I didn't get any sleep for 3 days. My little brother died of a massive heart attack. The covid didn't help …just feels like things are piling up!
To make it worse my husband told me he is not an invalid and I dont need to remind him of appts and tests etc.. He will let me know if he needs my help. That hurt. I'm a person who wants to take care of ppl so I feel helpless. He doesn't want me asking how he is feeling. He doesn't breathe hard when talking to someone.but he walks around the house breathing hard and talking about his feet and hands hurting so bad. His mouth and then yet sometimes he will just reach out hold my hand. It is all confusing to me. I don't know what to say or do cause it is never correct.

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Sorry I meant mouth sores. He will never give up fighting cancer. Will not stop treatment.

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@lah

Thank you for your response .
The whirlwind feeling is of life flying by and I know life will never be the same as it was pre cancer. Probably just feeling sorry for myself. Plus the fact I didn't get any sleep for 3 days. My little brother died of a massive heart attack. The covid didn't help …just feels like things are piling up!
To make it worse my husband told me he is not an invalid and I dont need to remind him of appts and tests etc.. He will let me know if he needs my help. That hurt. I'm a person who wants to take care of ppl so I feel helpless. He doesn't want me asking how he is feeling. He doesn't breathe hard when talking to someone.but he walks around the house breathing hard and talking about his feet and hands hurting so bad. His mouth and then yet sometimes he will just reach out hold my hand. It is all confusing to me. I don't know what to say or do cause it is never correct.

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@lah, My sincerest condolences on the death of your little brother. COVID has complicated every aspect of our lives and none more so than those of being unable to grieve in the usually accepted manner and with rituals so many of us have depended upon until now.

I am so sorry you are going through these very turbulent, unsettling times due to your husband's changeable behavior during this battle you are both daily confronting and trying to deal with as a result of his cancer.

I recently lost my dearest friend of decades and am still reeling from the shock and reality of her death. During the months leading up to her final days, I was often frustrated and even resentful by the behaviors of both her guy and my friend. They were passive when I encouraged them to be much more proactive about her immediate health decisions, their changing of legal documents like wills, durable power of attorney, and living will, etc. Her protracted illness and their ages and mild mannered natures all contributed to almost unendurable family difficulties toward the end of her life.

Long a primary family caregiver, I can identify especially with your feelings of helplessness, confusion and distress in wanting to help but being rebuffed as you deal with your husband's sometimes unpredictable behavior.

My inability to be physically present or to have my friends act sooner on some issues that could have spared later grief has been incredibly hard for a "doer" who cares so much about their welfare.

Maybe it might help in some small way if you can tell yourself as I did myself many, many times that some of this hurtful behavior or inability to take action is all a part of the daily nightmare being experienced by these dearest ones meeting the new everyday challenges and changes in their lives.

Being a very sensitive person, it is harder for me than many not to take things too personally. Maybe reminding yourself that your husband is striking out at the person who he knows loves him best will help because we only strike out at those we feel closest to and safest with?

Our situations are far different but I want you to know that I am thinking of you and your beloved during this most stressful of times in your lives.

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@lah

Thank you for your response .
The whirlwind feeling is of life flying by and I know life will never be the same as it was pre cancer. Probably just feeling sorry for myself. Plus the fact I didn't get any sleep for 3 days. My little brother died of a massive heart attack. The covid didn't help …just feels like things are piling up!
To make it worse my husband told me he is not an invalid and I dont need to remind him of appts and tests etc.. He will let me know if he needs my help. That hurt. I'm a person who wants to take care of ppl so I feel helpless. He doesn't want me asking how he is feeling. He doesn't breathe hard when talking to someone.but he walks around the house breathing hard and talking about his feet and hands hurting so bad. His mouth and then yet sometimes he will just reach out hold my hand. It is all confusing to me. I don't know what to say or do cause it is never correct.

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@lah, you have had and still have a lot going on. I understand your whirlwind feeling better now. Lack of sleep really affects everything.

When my father had end-stage colon cancer, he, too, said some similar comments to me. When he first told me he didn't want my help, he was quite cruel about it. It hurt, a lot. I was grateful for a later conversation when he was hurting less himself (possibly both physically and mentally), he took more time to explain that my type of help wasn't helpful and why. He didn't want information. He didn't want to know about potential side effects. He didn't want to be a patient. These are the things I clung to: research, information and prevention of unwanted side effects. For him, he knew he had limited time and he wanted to spend it living, not hearing about what might happen. He'd deal with it as it came. Writing this I see his point of view so much more clearly. But at the time I felt helpless and hurt that I couldn't do more. After he shared with me, I turned my focus of help to my mom. I supported her while she enjoyed life with him as much as was possible. This gave her an outlet to talk about her fears and ask for information as she needed it even if he didn't. This arrangement worked well for us. They spent some of the most meaningful moments of their marriage in those final months. For that I'm grateful.

Lah, I'm not sure if my story helps. I wonder if your husband would like to be more partners and less patient and caregiver. His charade of everything is okay with others might be the one thing he feels he can control. His reaching out to hold your hand says volumes. If you're like me, you want to fill the silences with questions "How are you?" "Can I get you anything?" "Do you feet hurt?" etc. Perhaps he just wants you to be with him. Don't be afraid to talk about all manner of things besides the disease. Talk about things that bring you both joy. What do you think?

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@colleenyoung

@lah, you have had and still have a lot going on. I understand your whirlwind feeling better now. Lack of sleep really affects everything.

When my father had end-stage colon cancer, he, too, said some similar comments to me. When he first told me he didn't want my help, he was quite cruel about it. It hurt, a lot. I was grateful for a later conversation when he was hurting less himself (possibly both physically and mentally), he took more time to explain that my type of help wasn't helpful and why. He didn't want information. He didn't want to know about potential side effects. He didn't want to be a patient. These are the things I clung to: research, information and prevention of unwanted side effects. For him, he knew he had limited time and he wanted to spend it living, not hearing about what might happen. He'd deal with it as it came. Writing this I see his point of view so much more clearly. But at the time I felt helpless and hurt that I couldn't do more. After he shared with me, I turned my focus of help to my mom. I supported her while she enjoyed life with him as much as was possible. This gave her an outlet to talk about her fears and ask for information as she needed it even if he didn't. This arrangement worked well for us. They spent some of the most meaningful moments of their marriage in those final months. For that I'm grateful.

Lah, I'm not sure if my story helps. I wonder if your husband would like to be more partners and less patient and caregiver. His charade of everything is okay with others might be the one thing he feels he can control. His reaching out to hold your hand says volumes. If you're like me, you want to fill the silences with questions "How are you?" "Can I get you anything?" "Do you feet hurt?" etc. Perhaps he just wants you to be with him. Don't be afraid to talk about all manner of things besides the disease. Talk about things that bring you both joy. What do you think?

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Exactly!!! You said it exactly right!. I will keep this to reread because I'm sure I will need to.
Thank you and God bless you. You were my angel today.

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@lah

Exactly!!! You said it exactly right!. I will keep this to reread because I'm sure I will need to.
Thank you and God bless you. You were my angel today.

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🙂

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@colleenyoung

@lah, you have had and still have a lot going on. I understand your whirlwind feeling better now. Lack of sleep really affects everything.

When my father had end-stage colon cancer, he, too, said some similar comments to me. When he first told me he didn't want my help, he was quite cruel about it. It hurt, a lot. I was grateful for a later conversation when he was hurting less himself (possibly both physically and mentally), he took more time to explain that my type of help wasn't helpful and why. He didn't want information. He didn't want to know about potential side effects. He didn't want to be a patient. These are the things I clung to: research, information and prevention of unwanted side effects. For him, he knew he had limited time and he wanted to spend it living, not hearing about what might happen. He'd deal with it as it came. Writing this I see his point of view so much more clearly. But at the time I felt helpless and hurt that I couldn't do more. After he shared with me, I turned my focus of help to my mom. I supported her while she enjoyed life with him as much as was possible. This gave her an outlet to talk about her fears and ask for information as she needed it even if he didn't. This arrangement worked well for us. They spent some of the most meaningful moments of their marriage in those final months. For that I'm grateful.

Lah, I'm not sure if my story helps. I wonder if your husband would like to be more partners and less patient and caregiver. His charade of everything is okay with others might be the one thing he feels he can control. His reaching out to hold your hand says volumes. If you're like me, you want to fill the silences with questions "How are you?" "Can I get you anything?" "Do you feet hurt?" etc. Perhaps he just wants you to be with him. Don't be afraid to talk about all manner of things besides the disease. Talk about things that bring you both joy. What do you think?

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@colleenyoung, What a touching and meaningful response to @lah you shared with her and all of us. How good, although regrettably personally hurtful, it was to hear from his perspective what he wanted, didn't want, and needed as he confronted the continual changes in his illness. You've provided insights we can all benefit from. Thank you.

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@fiesty76

@lah, My sincerest condolences on the death of your little brother. COVID has complicated every aspect of our lives and none more so than those of being unable to grieve in the usually accepted manner and with rituals so many of us have depended upon until now.

I am so sorry you are going through these very turbulent, unsettling times due to your husband's changeable behavior during this battle you are both daily confronting and trying to deal with as a result of his cancer.

I recently lost my dearest friend of decades and am still reeling from the shock and reality of her death. During the months leading up to her final days, I was often frustrated and even resentful by the behaviors of both her guy and my friend. They were passive when I encouraged them to be much more proactive about her immediate health decisions, their changing of legal documents like wills, durable power of attorney, and living will, etc. Her protracted illness and their ages and mild mannered natures all contributed to almost unendurable family difficulties toward the end of her life.

Long a primary family caregiver, I can identify especially with your feelings of helplessness, confusion and distress in wanting to help but being rebuffed as you deal with your husband's sometimes unpredictable behavior.

My inability to be physically present or to have my friends act sooner on some issues that could have spared later grief has been incredibly hard for a "doer" who cares so much about their welfare.

Maybe it might help in some small way if you can tell yourself as I did myself many, many times that some of this hurtful behavior or inability to take action is all a part of the daily nightmare being experienced by these dearest ones meeting the new everyday challenges and changes in their lives.

Being a very sensitive person, it is harder for me than many not to take things too personally. Maybe reminding yourself that your husband is striking out at the person who he knows loves him best will help because we only strike out at those we feel closest to and safest with?

Our situations are far different but I want you to know that I am thinking of you and your beloved during this most stressful of times in your lives.

Jump to this post

Right!!. I just want things to be as easy as possible for him. I am the same, I want to be prepared prepared googling. everything, asking questions finding out side effects. Etc. I think in my mind it makes it easier for him. But he doesn't want to know
He's not the same man.
That makes it hard.
I just want to run away sometimes. I feel awful even saying that. I can't even imagine what it would be like on his end.
Prayers and hugs

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Beautifully expressed

Liked by lah, fiesty76

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@byrnesie

Beautifully expressed

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update. I have started moving on to projects to do. To keep myself busy. My boss told me I will now permanently work from home. So my new project is to set up a nice office space in a spare bedroom. Its going to be more in my eyes. It will be a retreat for myself. Am I running away tho?
He didn't like the colors I picked out- I said nothing just continued. I am going to refinish my moms old desk also. Knowing whatever I decide to do to it he will find something wrong with it. It's a horrible life never ever being complimented on anything I do.
Then I feel selfish.
In September he will have another scan. Sometime in October he will have a lung biopsy. That is going to help a lot knowing for sure if the lesions are scars or if the cancer is still there trapped inside.
I tell myself so many people have it so much worse. But it is getting harder to be positive after 7 years of this. I'm exhausted, but my doctor prescribed thanks to xanax at bedtime i am able to & sleep at least.

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I have been touched by the struggles you and your husband have gone through and are continuing to go through. I've been impressed with the comments and suggestions to you from others. I've been caring for my wife at home who was diagnosed with Alzheimer's Disease in 2012. Our situation is much less challenging than yours but still some of the things that have helped me may, perhaps with some modification, help you.

Last week I felt overwhelmed with all the things going on in my life. My attention was scattered and I was having trouble concentrating and focusing. When I discussed it with my counsellor he suggested that maybe I needed to prioritize all my activities. He said "You've got a lot of things on your plate right now and you need to take some things off your plate." I decided to postpone indefinitely shopping for a later model car. I chose to stop doing some other things in my routine and to postpone some low priority activities. This has helped me feel much less harassed and besieged. I'm better able to focus on what is really important to me and my wife.

I know you are well aware of this but it might be good to be reminded again. High on your priority list should be taking good care of yourself, physically, mentally, and otherwise. That is something important you can do for yourself and also for your husband.

My thoughts are with you. Take care.

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@lah

update. I have started moving on to projects to do. To keep myself busy. My boss told me I will now permanently work from home. So my new project is to set up a nice office space in a spare bedroom. Its going to be more in my eyes. It will be a retreat for myself. Am I running away tho?
He didn't like the colors I picked out- I said nothing just continued. I am going to refinish my moms old desk also. Knowing whatever I decide to do to it he will find something wrong with it. It's a horrible life never ever being complimented on anything I do.
Then I feel selfish.
In September he will have another scan. Sometime in October he will have a lung biopsy. That is going to help a lot knowing for sure if the lesions are scars or if the cancer is still there trapped inside.
I tell myself so many people have it so much worse. But it is getting harder to be positive after 7 years of this. I'm exhausted, but my doctor prescribed thanks to xanax at bedtime i am able to & sleep at least.

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I am so sorry about your wife. Alzheimers is a cruel disease.
I think it is great you can keep her at home. Although that means a lot less time for you to recoup and refresh. Do you have someone to come in and stay with her so you can get out for a while?
Thank you for your response, I think you have it worse and it brought me back to reality. My mom died of alzheimers a couple years ago. It was devastating to watch. I've got to stop the selfish complaining and feeling sorry for myself.
As i understand it colon cancer with metastatic lung cancer generally live 5 years or less after diagnosis. Does anyone know if that is correct? He's starting on year 7 now, and although things are different and will never be the same, he is still here and capable of taking care of himself.
Sometimes i have to step back and find things to be grateful for.
THERE IS ALWAYS SOMETHING TO BE THANKFUL FOR. Everyone have a nice day !

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We have an in-home caregiver from 9 to noon twice a week. She gives Judy a shampoo and shower and is a good companion with her and does some light house cleaning. My daughter's employer is 220 miles away but because of COVID is telecommuting and is living with us! She is disciplined with her work from nine to five but is a big help at other times to free me up for some things for myself. Before COVID, I also enjoyed a monthly lunch with our men's-only caregivers support group and also our next door neighbor came over once a week to visit with Judy for a couple of hours.

Judy's gait is getting very unsteady and we are having difficulty walking her from one place to another. We have a wheelchair that sometimes is needed but even then it is difficult for one person to help her transfer to a chair, the toilet, to and from bed, etc. There is a big danger of falling and injuring her and possible us. We're making arrangements for her to be admitted to a memory care facility within the next few weeks. We've toured it and have friends who recommended it based on their own family experience.

I encourage you to not blame yourself for your natural human feelings that you experience from time to time. Our moderator at our support group has told us "Don't blame yourself if you examine some of the things you've done and are sorry for some things. We know one thing for sure, you did your best at the time!" We need to be kind to ourselves, cut ourselves some slack. Be as kind to yourself as you would a good friend in the same circumstances.

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I joined here last year. My husband was diagnosed with colon cancer and had 12 inches removed on feb 14 in 2014. He had 5fu and I dont remember but think something else along with it. Then was off chemo for 1 1/2 years when a CT scan showed cancer in his lungs. 40 small lesions (dont know what to call them) scattered through both lungs. Back on chemo. He was put on chemo and in the last 4 years has had every chemo and immunotherapies available for colon cancer.. He had CT scans about every 3 months and PET Scans as often as allowed by insurance company. After he had his last scan a couple weeks ago, dr called and said he would like him to see the cyberknife dr. We saw her yesterday
Long story short he has more uptake in lesions and a hot spot (new) in a lymph node. The dr said she can do the procedure but first he needs a CT scan and see a pulominist for him to add some gold leads (?)next to the biggest ones she is going to treat. She told us that she cannot cure the cancer but she can help by getting rid of the 3 biggest ones, but he will need to go on chemo again. This will give him a break from chemo. They will do cyberknife. He has a great attitude, and is a very strong man. I try my best to support him, but while he fights (as selfish as this sounds) i miss the people we were and now I know that will never come back. I feel guilty for even thinking it. My family lives out of state and with Covid I cannot visit them. I wrote in an earlier post that everything I did was wrong to him. Anything I say, or do. He is (very obviously) trying hard not to do that.
I'll stop now- this is too long. I could write forever. I pray for all in this journey. It is not an easy one.

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