← Return to IV Colorectal Cancer Patients - Questions from a caregiver

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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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Replies to "Welcome to Connect @bbams. I'm so glad you found us. I'd like to introduce you to..."

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.

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.

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.