Metastasized colon cancer: At a loss..what is next?

Posted by lah @lah, Sep 24, 2019

My husband was diagnosed with colon cancer over 5 years ago. It will be 6 years on valentine’s day. About a year later it metastasized to both lungs. There are a lot of small modules in both lungs. He had a lung biopsy done and confirmed it is colon cancer. He has taken all of the chemos and immunotherapy for colon cancer.
He has worked pretty much everyday except for surgeries or chemo days. It has taken me a long time but, I get it now. He works to keep busy and keep his mind off it.
He takes care of all his own needs. So I don’t really feel I deserve the title of caregiver. But yet, here I am feeling lonely, depressed, and sad most of the time. The last 2 weeks I went through a really dark time. I might mention that during these 6 years I lost my mom, dad and in February my youngest brother died suddenly of a massive heart attack.
No matter what I say or do it is wrong. He likes a food one week, so I buy it again and suddenly he doesn’t really like it. Nothing I cook is right. Nothing I say is right. Nothing I do is right in his eyes. I act silly with the grandkids and he shakes his head in disapproval.
I realize he is sick, and not feeling well. I try to remember that he is just taking it out on me cause I’m the closest one to him.
All of my family lives in different states. I work full time, take a yoga class once a week and ride my stationary bike at least 45 minutes 4 days a week. Last summer I broke the tibula and fibula off in my right ankle. Had emergency surgery and still not 100%. I’m 62 so maybe it’s as good as it’s going to get.
Wow seems sort of selfish when I re read this. Mostly about me.
I notice in the past several weeks he seems to be breathing harder. He finally admitted he gets out of breath easy and has heart palpitations.
I want to know what to watch for next. I know everyone is different and there is no set answer. But is this something he can overcome? When I ask the dr he said we always hope to cure.
Wow sorry so long.

I wish I had more advice but I don’t. I will say, you are entitled to your feelings and they are valid. Just because your partner has cancer, doesn’t mean your feelings and needs get out on hold. You’ve gone through a battle right along with him, all while experiencing loss. You don’t sound selfish at all. You sound like a human being who is hurting and scared. Have you thought Of counseling ? It may help you to have someone else validate your feelings. It sounds like you are doing self care, which is great! your husband can schedule an appt with his doctor to figure out what’s going on with the breathing!

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Hello @lah,

I am so happy that you’ve joined Connect! Let me explain…
The plain truth is that in assuming the responsibility of caring for another person, life will be “mostly about you.” It may sound selfish, but YOU are dealing with the reality of leaving behind a life you had, and trying to cope (admirably) with your present situation.
You’ve put your life on hold to care for someone you love – now, you just need to emotionally/mentally adjust to the fact that you are facing some difficult feelings (like resentment, guilt). But you don’t have to do it alone.
And that is why I’m so glad that you’ve reached out to this community – it always helps to connect with someone who understands.

I’d like you to meet @dem2301 @vickys @IndianaScott @harriethodgson1 @rmftucker @susan2018 @jodeej – and so many other members, who’ve shared their experiences and insights as caregivers to loved ones. Here are some discussions, in the Caregiver’s group, that you might find useful:
– Weary of Caregiving https://connect.mayoclinic.org/discussion/weary/
– Long-term caregiving: need a place to vent https://connect.mayoclinic.org/discussion/just-learned-about-this-group/
– Lessons I Learned From Caregiving https://connect.mayoclinic.org/discussion/lessons-i-learned-from-caregiving/
– Caregiving: I’m frustrated and exhausted. https://connect.mayoclinic.org/discussion/frustrated-and-exhausted/
– Handling Ups and Downs in Marriage and other relationships https://connect.mayoclinic.org/discussion/handling-ups-and-downs-in-marriage-and-other-relationships/

I’m also tagging @travelgirl @soul @lynne @brenz @komalkochar @sc1218 and @tressa @suemer @nannytart, who are living with colorectal/colon cancer or caring for someone living with this cancer.

@lah, I really do believe that taking care of oneself is often a group effort – have you considered any professional therapy or counseling? Together with your husband, or otherwise?

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@kanaazpereira

Hello @lah,

I am so happy that you’ve joined Connect! Let me explain…
The plain truth is that in assuming the responsibility of caring for another person, life will be “mostly about you.” It may sound selfish, but YOU are dealing with the reality of leaving behind a life you had, and trying to cope (admirably) with your present situation.
You’ve put your life on hold to care for someone you love – now, you just need to emotionally/mentally adjust to the fact that you are facing some difficult feelings (like resentment, guilt). But you don’t have to do it alone.
And that is why I’m so glad that you’ve reached out to this community – it always helps to connect with someone who understands.

I’d like you to meet @dem2301 @vickys @IndianaScott @harriethodgson1 @rmftucker @susan2018 @jodeej – and so many other members, who’ve shared their experiences and insights as caregivers to loved ones. Here are some discussions, in the Caregiver’s group, that you might find useful:
– Weary of Caregiving https://connect.mayoclinic.org/discussion/weary/
– Long-term caregiving: need a place to vent https://connect.mayoclinic.org/discussion/just-learned-about-this-group/
– Lessons I Learned From Caregiving https://connect.mayoclinic.org/discussion/lessons-i-learned-from-caregiving/
– Caregiving: I’m frustrated and exhausted. https://connect.mayoclinic.org/discussion/frustrated-and-exhausted/
– Handling Ups and Downs in Marriage and other relationships https://connect.mayoclinic.org/discussion/handling-ups-and-downs-in-marriage-and-other-relationships/

I’m also tagging @travelgirl @soul @lynne @brenz @komalkochar @sc1218 and @tressa @suemer @nannytart, who are living with colorectal/colon cancer or caring for someone living with this cancer.

@lah, I really do believe that taking care of oneself is often a group effort – have you considered any professional therapy or counseling? Together with your husband, or otherwise?

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Thank you. I have been reading here at connect foe a couple weeks or so. This morning I just started typing.im glad I did and glad I found all of you.
I have been thinking about getting counseling. All I need to do is make that appointment!
Our lives have all changed because of this disease. It will never be the same again. We WILL emerge from this stronger than before.
God, I hate cancer.

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@lah

Thank you. I have been reading here at connect foe a couple weeks or so. This morning I just started typing.im glad I did and glad I found all of you.
I have been thinking about getting counseling. All I need to do is make that appointment!
Our lives have all changed because of this disease. It will never be the same again. We WILL emerge from this stronger than before.
God, I hate cancer.

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Hello @lah It is nice to e-meet you here on Mayo Connect even if it is due to the tough situation your husband is in.

I'm Scott and my wife suffered from brain cancer for over 14 years.

It was immediately a new and tough path we were on once cancer joined our family. Our lives cannot simply forget that it is with us. Cancer changed everything. Our future became even more unknown that it was before. As they say — the only certainty in life is change. That is doubly true when we are living with a chronic illness. But as I used to say to my wife, none of us are ever guaranteed anything in life, especially the wishes we may have been holding for our future.

The day my wife's neurosurgeon told us it was cancer our lives went off the rails into a direction none of us ever had even thought possible. I'm glad to read your husband's doctor is thinking cure! That is wonderful since from day one my wife's diagnosis included only the plans for palliative care. Curative was impossible. Positive thinking is always a huge plus!

While it is terrific your husband continues to be able to do all that life demands of him, that does not mean you aren't using immense amounts of emotional and psychological energy worrying, watching, analyzing, etc. day and night! For me the demands changed as did the dynamics of our lives. My wife and I were melded into a new and different couple due to those changes. When the one I loved suddenly was far more mortal than I wished, my life's focus changed forever and it became a more constant 'we' rather than 'she and I'.

I hope you are successful in finding a good counselor in your area.

Strength, courage, and peace

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I know you are going through tough time. It is hard to see someone who has been a vibrant being become someone who is constantly disapproving of everything you do. I hope you do follow through with the counselor and try to reach out to friends to help you. Everyone always says, "Let me know if you need something." Just ask them when you need a break or help of some kind. They want to help but don't really know what you need.
My husband was diagnosed with Azheimer's Disease with Vascular dementia about 5 years ago when he was 84 years old. At first it was only a slight memory loss and he was asking me what day it was several times a day. He was able to continue with his regular routine of attending weekly auctions locally and occasionally at a large auction house, play pool at the community center several days a week and attend other activities with me. Then he had a couple blackout episodes while at auctions and since it was summer and hot, we though it was just heat. He would recover unjust a minute or two and then seemed fine. Later we found out he had 4 TIA's (small strokes) which were probably attributed the blackout times. He was making poor judgements and constantly criticizing me for everything. I mentioned this to his Dr that this was happening and she referred him to a Psychologist who suggested he might be depressed. So he was put on Zoloft. This helped some until about 3 years ago when he had lost much of his walking ability and was using a walker and wheelchair. He began hallucinating, was delusional, and accusing me of all kinds of things. His Dr referred him to a Senior Behavioral unit at our local hospital for evaluation and the decision was made that it was time for a Memory Unit.
He has been at the Care Center for 2 years and is now unable to do anything except feed himself. He still thinks he can walk, etc, and has slipped out of his wheel chair and recliner a couple times, so they no longer leave him alone in his wheelchair and are careful that the remote for his recliner in out of his reach. He still knows us, even people he hasn't seen for sometime, but much of the time he is remembering his truck driving days or being home and needing to cut wood for the winter supply or mow the lawn, etc. He is on multiple medications to help with the anxiety and depression as well as slow the memory loss, but it is only a matter of time.
I drive 45 miles one way to visit every other day and try to fill my days with friends, family and church family. Just one day at a time and always hope that the day I visit he will be pleasant and not accuse me of something. It is hard but with my support system and God's help, I will get through this also.
This group is a great place to vent and get excellent advice. Everyone is so accepting. Enjoy every minute with your husband and keep the good memories.

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@lah, Good evening. Whew……let's take three deep breaths to clear our mind and engage our heart. You, my dear, are running smack into challenges every day. It appears that your main challenge is separating the caregiver role from the wife role.

Have you found a support group? Does your medical facility offer meditation groups? I know Mayo has one in the Cancer Center every Wednesday at 6:15 pm. for Caregivers. For me, on location there for 7 weeks of radiation for my life partner ended up being good (not great) time. We stayed at Hope Lodge and got to meet other cancer patients and their caregivers in a very transparent and accepting environment.

My life partner went from denial, "I don't want to know about it" to anger "I did surgery last year and thought this was over" as if not knowing would make the treatment process any more comfortable as well as carrying a guaranteed outcome of "cure". The sharp tongue from a gentle and considerate man….the high expectations from someone who was always helping others, the depression and anxiety disguised as boredom. All of these on any given day…..plus the denial of discomfort, the jocularity when confronted with Cancer reality.

Do you have a therapist or anyone who can help you with coping strategies? Do you get a respite once a week when a friend or relative can come for a few hours? The salvation for me was the activity on Floor #19 in the Gonda Bldg. It was the peregrine falcon project that Mayo fosters.

Once back home, we were able to find Bridge groups for him on two or three days a week. He started reading Bridge manuals again. I put all of his music in 5 defined playlists and put them on his phone so he could listen anytime on his speakers. We labeled the lounge chair in his office, the ICU. When he was most anxious he retired to the ICU where I found that a nap was reviving for both of us.

And finally, set up call schedules. I did this with a family in which the husband was a repeat cancer patient (and still is) married to a pre-admission nurse. She had to drop the nurse role and become just his loving wife. That required some couples therapy and it worked. We talk to them every Sunday.

I am sure there are more ideas floating around to assist you. If you could have anything you wanted, what would the first thing be other than a cure? How can I help you further? May you find some joy in your day tomorrow. Chris

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@lah Your comments just seem real to me. My husband and I are early in the cancer journey, just a month in to a pancreatic cancer diagnosis after life altering surgery. But previous health issues this year have hinted at the coming changes in our lives. All situations are different but there are similarities too. Mainly that life has changed. That the future is unknown but surely includes stress. And you, as do I, have no nearby family and also have other losses in our lives. Before I even knew the diagnosis would be cancer, I requested a referral to a counselor from my physician. I knew I needed a support system. I also asked two women to be my companions on this journey, not close friends or relatives but rather wise women who I felt would be empathetic and emotionally available to me. We don’t live close, but they are available to me online. I don’t communicate with them continuously, just know that I can if need be. I also found a woman through another group who I did not previously know but whose husband is going through similar diagnosis and treatment and we support each other through occasional texts. To be honest I struggle with resentment because some of my husband’s health issues are probably related to health choices he’s made in life but now not only he but I too am suffering the consequences. And I feel that it has often in our lives together fallen to me to be the strong one despite the toll it has taken on me. And then I feel bad and remind myself that no one’s future is guaranteed, my own included. I also wonder if the energy I am expending on his care, physical and mental, will end up hurting my own health. I suspect you understand. Perhaps it can help all caregivers, you and me included, to know that we are not alone.

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@susan2018

@lah Your comments just seem real to me. My husband and I are early in the cancer journey, just a month in to a pancreatic cancer diagnosis after life altering surgery. But previous health issues this year have hinted at the coming changes in our lives. All situations are different but there are similarities too. Mainly that life has changed. That the future is unknown but surely includes stress. And you, as do I, have no nearby family and also have other losses in our lives. Before I even knew the diagnosis would be cancer, I requested a referral to a counselor from my physician. I knew I needed a support system. I also asked two women to be my companions on this journey, not close friends or relatives but rather wise women who I felt would be empathetic and emotionally available to me. We don’t live close, but they are available to me online. I don’t communicate with them continuously, just know that I can if need be. I also found a woman through another group who I did not previously know but whose husband is going through similar diagnosis and treatment and we support each other through occasional texts. To be honest I struggle with resentment because some of my husband’s health issues are probably related to health choices he’s made in life but now not only he but I too am suffering the consequences. And I feel that it has often in our lives together fallen to me to be the strong one despite the toll it has taken on me. And then I feel bad and remind myself that no one’s future is guaranteed, my own included. I also wonder if the energy I am expending on his care, physical and mental, will end up hurting my own health. I suspect you understand. Perhaps it can help all caregivers, you and me included, to know that we are not alone.

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Yes. I DO understand.
I'm at work now, but let's keep in touch. Where do you live ?

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@lah

Yes. I DO understand.
I'm at work now, but let's keep in touch. Where do you live ?

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Western Minnesota

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@susan2018

@lah Your comments just seem real to me. My husband and I are early in the cancer journey, just a month in to a pancreatic cancer diagnosis after life altering surgery. But previous health issues this year have hinted at the coming changes in our lives. All situations are different but there are similarities too. Mainly that life has changed. That the future is unknown but surely includes stress. And you, as do I, have no nearby family and also have other losses in our lives. Before I even knew the diagnosis would be cancer, I requested a referral to a counselor from my physician. I knew I needed a support system. I also asked two women to be my companions on this journey, not close friends or relatives but rather wise women who I felt would be empathetic and emotionally available to me. We don’t live close, but they are available to me online. I don’t communicate with them continuously, just know that I can if need be. I also found a woman through another group who I did not previously know but whose husband is going through similar diagnosis and treatment and we support each other through occasional texts. To be honest I struggle with resentment because some of my husband’s health issues are probably related to health choices he’s made in life but now not only he but I too am suffering the consequences. And I feel that it has often in our lives together fallen to me to be the strong one despite the toll it has taken on me. And then I feel bad and remind myself that no one’s future is guaranteed, my own included. I also wonder if the energy I am expending on his care, physical and mental, will end up hurting my own health. I suspect you understand. Perhaps it can help all caregivers, you and me included, to know that we are not alone.

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@susan2018 You sound so wise and comforting. I loved reading your post!

Liked by lah

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@lisag03

I wish I had more advice but I don’t. I will say, you are entitled to your feelings and they are valid. Just because your partner has cancer, doesn’t mean your feelings and needs get out on hold. You’ve gone through a battle right along with him, all while experiencing loss. You don’t sound selfish at all. You sound like a human being who is hurting and scared. Have you thought Of counseling ? It may help you to have someone else validate your feelings. It sounds like you are doing self care, which is great! your husband can schedule an appt with his doctor to figure out what’s going on with the breathing!

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I made my first appt for counseling!

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@susan2018

Western Minnesota

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I'm in Pennsylvania.
Did you get a lot of snow last weekend?

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@susan2018

@lah Your comments just seem real to me. My husband and I are early in the cancer journey, just a month in to a pancreatic cancer diagnosis after life altering surgery. But previous health issues this year have hinted at the coming changes in our lives. All situations are different but there are similarities too. Mainly that life has changed. That the future is unknown but surely includes stress. And you, as do I, have no nearby family and also have other losses in our lives. Before I even knew the diagnosis would be cancer, I requested a referral to a counselor from my physician. I knew I needed a support system. I also asked two women to be my companions on this journey, not close friends or relatives but rather wise women who I felt would be empathetic and emotionally available to me. We don’t live close, but they are available to me online. I don’t communicate with them continuously, just know that I can if need be. I also found a woman through another group who I did not previously know but whose husband is going through similar diagnosis and treatment and we support each other through occasional texts. To be honest I struggle with resentment because some of my husband’s health issues are probably related to health choices he’s made in life but now not only he but I too am suffering the consequences. And I feel that it has often in our lives together fallen to me to be the strong one despite the toll it has taken on me. And then I feel bad and remind myself that no one’s future is guaranteed, my own included. I also wonder if the energy I am expending on his care, physical and mental, will end up hurting my own health. I suspect you understand. Perhaps it can help all caregivers, you and me included, to know that we are not alone.

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How are things going? I have my first counseling session tomorrow. Do you think it helps you?

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@lah

How are things going? I have my first counseling session tomorrow. Do you think it helps you?

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Hi @lah. Well, we haven’t been home, but no snow where we live, But wow! Out West! We’ve been at Mayo Clinic for post op appt for my husband and to meet with oncology. They want to get him set up to start chemo ASAP but they discovered a pocket of fluid in the abdomen on CT so now he’s on two weeks of antibiotics. After that we have another checkup at Mayo. He’ll be having chemo at the hospital at home eventually. Good Luck at your appt. my first one was pretty much just an assessment, lots of questions. Know this, if you don’t click with the first therapist, don’t give up. Try another but give it a little time first before you do.

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@lah

How are things going? I have my first counseling session tomorrow. Do you think it helps you?

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Hello @lah I just wanted to say great news on getting your counseling appointment! I know, over the years and years my wife and I went to counseling, it was an incredible help to her, to me, and to us. It was something that neither of us ever regretted, even for a second.

I wish you all the best with your counselor!

Strength, courage, and peace!

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