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Joined: Aug 09, 2016

IV Colorectal Cancer Patients - Questions from a caregiver

Posted by @bbams, Aug 9, 2016

Hello all. My 36 year old husband was diagnosed with stage IV colorectal cancer 7 months ago. It has metastasized to his liver (22 cm tumor, shrunk to half that after some chemo) and multiple small tumors on his lungs. He has been nothing but positive – to the point that I almost thought it was denial – until a few weeks ago. He’s done a 180. Talking about how our lives will never be the same and not good (of course life will be different… but it can still be good!) and is making more comments about how I’ll be alone soon :*( The average prognosis is 3 years and, until the last few weeks, he was convinced he’d live a lot longer. Now not so much.

I’ve been on a few chat rooms where there have been stage IV CRC patients that are living longer than 3 years and hearing those stories seems to be the only thing that is giving him hope right now. Is there anyone out there who has been living with it for long periods of time, or who have had huge luck with chemo especially with liver metastasis? I’d LOVE to hear your story! He won’t go on these boards but it’ll be good to tell him about any stories that are shared 🙂

While I’m at it… if anyone has had Sir-Sphere/SIRT procedure, did you get headaches a few weeks after the procedure?

Thank you all!!

REPLY

Welcome to Connect @bbams. I’m so glad you found us.
I’d like to introduce you to a few other Connect members. Please meet @martid @retairforceman @sue_in_delaware @nananet who are living with advanced colorectal cancer.

I’d also like to bring caregivers @soul and @IndianaScott into the conversation. Soul’s mom has colorectal cancer and Scott took care of his wife who had a brain tumor. I hope you will connect because caregivers need a support circle too!

My father had stage IV CRC. Like your husband, he wouldn’t visit discussion boards. My mom and I did that 🙂 When my dad was diagnosed he was given 6 months with treatment and a year with palliative chemo. (Note: His cancer had metastasized throughout his body, not only his liver, thus not the same as your husband.) The chemo proved to be too much and he didn’t like how the side effects diminished his quality of life, so he stopped treatment. We were blessed to have him stick around for a year even without treatment. Most of that time, he was pain free or his pain was well managed.

Colorectal cancer is a slow moving cancer. You will find stories of hope. Remember too, that hope comes in many forms, and may evolve as time goes on. That’s okay. Enjoy every moment. I encourage you to honor your husband’s “180 turn” and to give voice to the fears – both his AND yours. Once you both acknowledge the elephant in the room, you can talk about the things that are important and good. Are you able to talk frankly about the “tough stuff” with each other?

@bbams Welcome to Mayo Connect. I’m so sorry to hear of your husband’s diagnosis, I can understand his shift in attitude, it is a difficult diagnosis to face. He is so fortunate though to have you and have you trying to encourage and help him during this time. While I don’t have the same type of cancer as your husband has I have some experience with cancer. This year I had my third surgery for a rare form of cancer, neuroendocrine tumor. All of my tumors have been in the duodenal bulb and this third surgery was difficult to face. My surgeries have been over a period of 13 years so I know that each new occurrence is a disappointment. As Colleen so aptly said, try and be with your husband and to give voice to his fears, it will encourage him to be honest with you and will undoubtedly deepen your relationship. If you can find a support group for caregivers that would be very beneficial to you. Caregivers need support as well! The American Cancer Society will have support groups for patients as well as caregivers. In my locale, University of Michigan has an extensive support group for caregivers. Make some calls and see what you can find. You will find it a great encouragement! Best wishes and please know that Mayo Connect is always here to listen and care! Prayers are going out for both you and your husband!

Hello @bbams. I am Scott Phillips and I, too, add my best wishes to you and your husband and family as you continue this journey. As @colleenyoung said, while my wife had brain cancer, I was her caregiver for the 14 years of her journey. When she was diagnosed, we were told the ‘average’ with her type of tumor was 7 years. She lived 14+. When she opted for home hospice care, she was given a prognosis of six months or less. She was in home hospice for over two years. She, too, had many swings in her outlook and attitude. All I can say is, as I am sure you are, just be as supportive as you can of your spouse’s feelings. Good, bad, up mood, or down mood, whatever he is feeling is valid to him. Often times, especially during the bad mood times, I wanted to be a cheerleader for my wife, but that was not what she needed. She told me she just really needed me to be with her and acknowledge her feelings as being valid to her.

Not much help, I am sure, but I hope it helps at least a little.

Peace and love,

@colleenyoung

Welcome to Connect @bbams. I’m so glad you found us.
I’d like to introduce you to a few other Connect members. Please meet @martid @retairforceman @sue_in_delaware @nananet who are living with advanced colorectal cancer.

I’d also like to bring caregivers @soul and @IndianaScott into the conversation. Soul’s mom has colorectal cancer and Scott took care of his wife who had a brain tumor. I hope you will connect because caregivers need a support circle too!

My father had stage IV CRC. Like your husband, he wouldn’t visit discussion boards. My mom and I did that 🙂 When my dad was diagnosed he was given 6 months with treatment and a year with palliative chemo. (Note: His cancer had metastasized throughout his body, not only his liver, thus not the same as your husband.) The chemo proved to be too much and he didn’t like how the side effects diminished his quality of life, so he stopped treatment. We were blessed to have him stick around for a year even without treatment. Most of that time, he was pain free or his pain was well managed.

Colorectal cancer is a slow moving cancer. You will find stories of hope. Remember too, that hope comes in many forms, and may evolve as time goes on. That’s okay. Enjoy every moment. I encourage you to honor your husband’s “180 turn” and to give voice to the fears – both his AND yours. Once you both acknowledge the elephant in the room, you can talk about the things that are important and good. Are you able to talk frankly about the “tough stuff” with each other?

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Hi @colleenyoung, I’m so so sorry for the delay. Been tied up with out of town visitors and my husband being all weird :/ I’m sorry to hear about your father. That’s so awful. I had a hard enough time accepting the 3 year thing… i don’t know what the heck i would have done if it was 6 months! But you’re right, its not a date that should be circled on the calendar because you never know.

No, we haven’t really talked about the tough stuff. I’ve tried and he’s just all jokes. In the beginning I never cried around him (and I’m super emotional), I’d make sure to have my daily breakdowns when I would leave the room or wait until I was out of the house because I didn’t want him to feel bad. In the hospital in January when he got diagnosed there were a few “I’ve ruined your life because of this” comments so after that I just decided to keep it together as much as I could around him. A few months in I cried a few times with him and he let me cry once and the other two times it was “ok you’ve got 1 minute then we have to be positive again”. which is why its so crazy seeing him like this. He is not a feelings guy AT ALL and just makes jokes when I try to talk to him which, unfortunately, makes me feel that much more helpless when I want to be there for him :*( So no, we don’t talk much about it unfortunately. I want to but just can’t get him to do it.

@hopeful33250

@bbams Welcome to Mayo Connect. I’m so sorry to hear of your husband’s diagnosis, I can understand his shift in attitude, it is a difficult diagnosis to face. He is so fortunate though to have you and have you trying to encourage and help him during this time. While I don’t have the same type of cancer as your husband has I have some experience with cancer. This year I had my third surgery for a rare form of cancer, neuroendocrine tumor. All of my tumors have been in the duodenal bulb and this third surgery was difficult to face. My surgeries have been over a period of 13 years so I know that each new occurrence is a disappointment. As Colleen so aptly said, try and be with your husband and to give voice to his fears, it will encourage him to be honest with you and will undoubtedly deepen your relationship. If you can find a support group for caregivers that would be very beneficial to you. Caregivers need support as well! The American Cancer Society will have support groups for patients as well as caregivers. In my locale, University of Michigan has an extensive support group for caregivers. Make some calls and see what you can find. You will find it a great encouragement! Best wishes and please know that Mayo Connect is always here to listen and care! Prayers are going out for both you and your husband!

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@hopeful33250 thank you for your response and I apologize for the delay. I’m sorry to hear about needing surgery again. How are you doing now? I want him to voice his fears but for some reason he just won’t open up. Any suggestions? I don’t try to force it out of him by saying he should talk, I know that will make him close off more. But I think its getting worse. How did you feel in those times? I mean, I’m guessing he feels as though no one can understand. And I know I can’t know how he feels but it helps to talk about it. Him and I are opposites like that. Haha. Thank you for the advice and sharing!

@IndianaScott

Hello @bbams. I am Scott Phillips and I, too, add my best wishes to you and your husband and family as you continue this journey. As @colleenyoung said, while my wife had brain cancer, I was her caregiver for the 14 years of her journey. When she was diagnosed, we were told the ‘average’ with her type of tumor was 7 years. She lived 14+. When she opted for home hospice care, she was given a prognosis of six months or less. She was in home hospice for over two years. She, too, had many swings in her outlook and attitude. All I can say is, as I am sure you are, just be as supportive as you can of your spouse’s feelings. Good, bad, up mood, or down mood, whatever he is feeling is valid to him. Often times, especially during the bad mood times, I wanted to be a cheerleader for my wife, but that was not what she needed. She told me she just really needed me to be with her and acknowledge her feelings as being valid to her.

Not much help, I am sure, but I hope it helps at least a little.

Peace and love,

Jump to this post

Hi @indianscott, that actually is incredibly helpful. Oddly enough it never even crossed my mind not to be a cheerleader to try to bring him out of his slump. But I think you’re right. I need to acknowledge it. Maybe he’ll open up more if I do let him just be sad and support that. Thank you so much… how did that not even cross my mind!? Ugh. Still learning as I go and as new things come up.

Speaking of! Can I get your advice @IndianaScott @colleenyoung @hopeful33250? What I’m dealing with now is just torturing me. It’s gotten worse than when i wrote before. Is it normal that he took his frustrations out on me? He blew up over something that wasn’t a big deal (talking about when he’s planning on going on disability. he works from home so he’s been working way longer than he should be… stresses him out too much). Now he hasn’t spoken to me for THREE days since he yelled and stormed out of the room. THREE!!!! it got worse 2 days ago when I calmly told him we need to resolve it by talking… which he refused to do. it’s completely irrational and degrading especially when I do SO much for him. He already told me I won’t be getting an apology, am I being stubborn wanting one? Is this kind of over the top irrational behavior normal? I feel like its gone too far, its not normal, and he’s just mean and ungrateful 🙁 I don’t even know how I’ll get over this if he just ignores it and acts like nothing happened (pre cancer bigger issues he does the juvenile silent treatment then pretends nothing ever happened but it has never been this bad). Do I let this go and write it off as displaced emotions and I’m the punching bag? Or do I stand my ground for an apology? I’m so confused :*(

@hopeful33250

@bbams Welcome to Mayo Connect. I’m so sorry to hear of your husband’s diagnosis, I can understand his shift in attitude, it is a difficult diagnosis to face. He is so fortunate though to have you and have you trying to encourage and help him during this time. While I don’t have the same type of cancer as your husband has I have some experience with cancer. This year I had my third surgery for a rare form of cancer, neuroendocrine tumor. All of my tumors have been in the duodenal bulb and this third surgery was difficult to face. My surgeries have been over a period of 13 years so I know that each new occurrence is a disappointment. As Colleen so aptly said, try and be with your husband and to give voice to his fears, it will encourage him to be honest with you and will undoubtedly deepen your relationship. If you can find a support group for caregivers that would be very beneficial to you. Caregivers need support as well! The American Cancer Society will have support groups for patients as well as caregivers. In my locale, University of Michigan has an extensive support group for caregivers. Make some calls and see what you can find. You will find it a great encouragement! Best wishes and please know that Mayo Connect is always here to listen and care! Prayers are going out for both you and your husband!

Jump to this post

Oh! 1 more thing. Thanks for the caregiver group advice. I went to one in Denver at Kaiser but I haven’t found any groups in my age range other than online and the Kaiser group couldn’t really seem to relate :/ Maybe if I go back. it was still early then. We had just found out we couldn’t have children, we were just about to get married (engaged 5/2015, diagnosis 1/2016, cancelled the huge wedding we were planning for next month in MA and instead got married 3/2016 in our living room in CO with 4 friends). I met a girl in the young caregiver online chat room who is in a very similar situation, we talk almost every day. She’s awesome. Maybe I should look into local support groups again now that the shock stage has finally passed.

@IndianaScott

Hello @bbams. I am Scott Phillips and I, too, add my best wishes to you and your husband and family as you continue this journey. As @colleenyoung said, while my wife had brain cancer, I was her caregiver for the 14 years of her journey. When she was diagnosed, we were told the ‘average’ with her type of tumor was 7 years. She lived 14+. When she opted for home hospice care, she was given a prognosis of six months or less. She was in home hospice for over two years. She, too, had many swings in her outlook and attitude. All I can say is, as I am sure you are, just be as supportive as you can of your spouse’s feelings. Good, bad, up mood, or down mood, whatever he is feeling is valid to him. Often times, especially during the bad mood times, I wanted to be a cheerleader for my wife, but that was not what she needed. She told me she just really needed me to be with her and acknowledge her feelings as being valid to her.

Not much help, I am sure, but I hope it helps at least a little.

Peace and love,

Jump to this post

Good morning @bbams! Sorry to hear what you are experiencing and while everyone’s cancer journey, and caregiving journey, are unique, I will give you my point of view on this. By the way, you can take it or leave it 🙂 I have thick skin (I used to be a fundraiser) and I realize this is just my opinion, also based on my unique experiences as a caregiver.

In my wife’s case her tripwire was never some major issue, but rather often a small item or small, perceived slight on her part over something I did or did not do. I was told by our hospice nurse this is common. She said patients often lash out at the person they feel the most at ease with as they are the person least likely to react in ways unknown to them and they have the most frequent (24-7 in my case) interactions with them.

I did notice one pattern. My wife’s anxiety, which was always a monumental issue her whole illness, always peaked (and so did her times of anger directed at me) before her appointments with doctors, nurses, etc. I realized it was due to her worry over being told some more bad news. Also when (and I would only come to realize this in hindsight) when she was experiencing some change she had not yet verbalized to me, her nurse, etc.

Hard as it was — and there were days it was WAY hard — I had to steel myself to the fact I knew I would be the goat to her anger (actually her fears) and as it was always just verbal, I learned to let it slide off my back. I would use the mantra that it was the disease yelling, not my wife. I worked very hard at overcoming it and pretending it never happened. That said, it still did hurt! I will say though many times I would go into the downstairs, close all the doors and ‘voice my opinion’ into an old pillow I kept there to help me let it go 🙂

Not sure this will help — so if I missed the point, etc. let me know — ask more —

Sending my good thoughts and strength to you.

@colleenyoung

Welcome to Connect @bbams. I’m so glad you found us.
I’d like to introduce you to a few other Connect members. Please meet @martid @retairforceman @sue_in_delaware @nananet who are living with advanced colorectal cancer.

I’d also like to bring caregivers @soul and @IndianaScott into the conversation. Soul’s mom has colorectal cancer and Scott took care of his wife who had a brain tumor. I hope you will connect because caregivers need a support circle too!

My father had stage IV CRC. Like your husband, he wouldn’t visit discussion boards. My mom and I did that 🙂 When my dad was diagnosed he was given 6 months with treatment and a year with palliative chemo. (Note: His cancer had metastasized throughout his body, not only his liver, thus not the same as your husband.) The chemo proved to be too much and he didn’t like how the side effects diminished his quality of life, so he stopped treatment. We were blessed to have him stick around for a year even without treatment. Most of that time, he was pain free or his pain was well managed.

Colorectal cancer is a slow moving cancer. You will find stories of hope. Remember too, that hope comes in many forms, and may evolve as time goes on. That’s okay. Enjoy every moment. I encourage you to honor your husband’s “180 turn” and to give voice to the fears – both his AND yours. Once you both acknowledge the elephant in the room, you can talk about the things that are important and good. Are you able to talk frankly about the “tough stuff” with each other?

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No apologies necessary. I’m thrilled that you returned to update us. (and it’s nice to “see” you with your profile picture)
My dad was a jokester too. In fact it was either jokes or darn right mean-ness and lashing out, at least with me. With my mom, it was different. They coveted their time alone and eventually talked about the tough stuff. I think my mom showed an incredible aptitude for listening between the lines if you know what I mean. Sometimes that meant just sitting together and letting the silence be. It is rare that both the patient and caregiver are ready to talk about the tough stuff at the same time. So often we feel obliged to let the patient lead the conversations. But caregivers count too. Know when to play the card “we have to talk about this.”

Okay – so I just wrote a whole bunch of stuff that seems to go around in circles. I hope you take what helps you and disregard the rest. There’s no rule book. Frankly, I think Scott articulates the caregiver experience the best.

Perhaps we can be your sounding board as you navigate conversations and this new role you’ve been thrown into.

@IndianaScott

Hello @bbams. I am Scott Phillips and I, too, add my best wishes to you and your husband and family as you continue this journey. As @colleenyoung said, while my wife had brain cancer, I was her caregiver for the 14 years of her journey. When she was diagnosed, we were told the ‘average’ with her type of tumor was 7 years. She lived 14+. When she opted for home hospice care, she was given a prognosis of six months or less. She was in home hospice for over two years. She, too, had many swings in her outlook and attitude. All I can say is, as I am sure you are, just be as supportive as you can of your spouse’s feelings. Good, bad, up mood, or down mood, whatever he is feeling is valid to him. Often times, especially during the bad mood times, I wanted to be a cheerleader for my wife, but that was not what she needed. She told me she just really needed me to be with her and acknowledge her feelings as being valid to her.

Not much help, I am sure, but I hope it helps at least a little.

Peace and love,

Jump to this post

THANK YOU THANK YOU. I actually cried when I read this. Seems like you’ve been through a lot of the same things. Read it before I got out of bed and struck up sort of a half conversation with Chris this morning. I’ll let it go. You’re 100% right Scott. He is the same way before appointments and I know he’s been anxious about treatments because we don’t even know what’s going to happen next – 3 options their thinking of. So that’s probably it since he’s been getting himself so worked up over that. Chris’s fear always manifests itself as anger too. 🙁 THANK YOU!! I’ll let you know how it goes. How are you doing lately?

@colleenyoung

Welcome to Connect @bbams. I’m so glad you found us.
I’d like to introduce you to a few other Connect members. Please meet @martid @retairforceman @sue_in_delaware @nananet who are living with advanced colorectal cancer.

I’d also like to bring caregivers @soul and @IndianaScott into the conversation. Soul’s mom has colorectal cancer and Scott took care of his wife who had a brain tumor. I hope you will connect because caregivers need a support circle too!

My father had stage IV CRC. Like your husband, he wouldn’t visit discussion boards. My mom and I did that 🙂 When my dad was diagnosed he was given 6 months with treatment and a year with palliative chemo. (Note: His cancer had metastasized throughout his body, not only his liver, thus not the same as your husband.) The chemo proved to be too much and he didn’t like how the side effects diminished his quality of life, so he stopped treatment. We were blessed to have him stick around for a year even without treatment. Most of that time, he was pain free or his pain was well managed.

Colorectal cancer is a slow moving cancer. You will find stories of hope. Remember too, that hope comes in many forms, and may evolve as time goes on. That’s okay. Enjoy every moment. I encourage you to honor your husband’s “180 turn” and to give voice to the fears – both his AND yours. Once you both acknowledge the elephant in the room, you can talk about the things that are important and good. Are you able to talk frankly about the “tough stuff” with each other?

Jump to this post

Thank you Colleen for mentioning my name. I was traveling and was just back to U.S. I would like to share with the patients and their immediate family members who is suffering colorectal cancer. My Mom had a colorectal cancel when she was diagnosed according to her endocrinology report in January, 2016. She is 77 years old. Her bowel movement was not good and she had direa came out with blood every times she went. My Mom is so afraid of operations. She did not want to do the operations. I could not take her here since she lives in Thailand. I checked with Mayo clinic website and found out the Thai Surgeon who came to practice in Minnasota Mayo clinic for a few years, With that connection, I was able to discuss with the doctor and took my Mom for the surgery in March. My Mom was staying at the hospital for 13 nights. It was a successful surgery. My Mom is back home and she is doing fine. My Mom is now very careful with what she eats. There is always way to treat this colorectal cancel. The sooner you know the better to approach the ways of treatment. You just need to be patience and always keep positive no matters what happen or you are in the worst scenario. I have been grateful to Mayo clinic, the Thai surgeon who came to practice at Mayo clinic.

Hi @bbams, Just checking in. How are you and your husband doing?

Hello, my mom was diagnosed with stage 3c colon cancer last month and had a resection with ileostomy…the doctor said that adjuvant chemo will be given but before that we did another chest and abdomen scan that shows 4 hypodense lesions in the liver…she has had her first cycle of chemo and came home yesterday.. She hasn’t been sleeping very well…she is a very strong woman and even now when she is going through the toughest time in her life she acts strong infront of me and my sisters because she is an only parent and does not want us to get worried but what i am worried about is her…i want her to talk to someone, to cry and disscuss what she is feeling..what else can i do for her??

@bush

Hello, my mom was diagnosed with stage 3c colon cancer last month and had a resection with ileostomy…the doctor said that adjuvant chemo will be given but before that we did another chest and abdomen scan that shows 4 hypodense lesions in the liver…she has had her first cycle of chemo and came home yesterday.. She hasn’t been sleeping very well…she is a very strong woman and even now when she is going through the toughest time in her life she acts strong infront of me and my sisters because she is an only parent and does not want us to get worried but what i am worried about is her…i want her to talk to someone, to cry and disscuss what she is feeling..what else can i do for her??

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Hello @bush Nice to e-meet you here. I am Scott and I was the primary caregiver for my wife who battled brain cancer for 14 years. I am sorry to hear about your mom’s diagnosis.

I am not any kind of medical professional, so this comes solely from my experiences with my wife.

Step by step, my wife lost her independence due to her disease. The one thing she could continue to have any semblance of control over was her communications, visits, etc. I realized very early on the best thing I could do was listen. I understand your desire to have her talk with someone, but in my wife’s case she did not want to until she was ready. Then it was only with certain people and for and at certain times. In her case it came down to one nurse and only one of her four siblings.

I am not saying this is right, all I am saying is this is what brought her comfort and come peace.

Just my two cents plain.

I send courage and strength to you all!

@bush

Hello, my mom was diagnosed with stage 3c colon cancer last month and had a resection with ileostomy…the doctor said that adjuvant chemo will be given but before that we did another chest and abdomen scan that shows 4 hypodense lesions in the liver…she has had her first cycle of chemo and came home yesterday.. She hasn’t been sleeping very well…she is a very strong woman and even now when she is going through the toughest time in her life she acts strong infront of me and my sisters because she is an only parent and does not want us to get worried but what i am worried about is her…i want her to talk to someone, to cry and disscuss what she is feeling..what else can i do for her??

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@IndianaScott yeah i totally get that…one of my mom’s friends had cancer, got cured then had a recurrence but is cancer free now…she is out of the country at the moment so im hoping once she is back my mom can talk to her….till then we are trying to be as helpful as possible but everytime we visit the oncologist, we get to hear another bad news

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