Newly a caregiver for my spouse with stage 4 colorectal cancer

Hello @tenc87 and welcome to Mayo Connect. I'm sorry to hear of the isolation you are experiencing now as a result of your husband's diagnosis. I will invite @twin71 to share with you on this forum. This is a great community to share experiences and offer encouragement.

If you want to respond to another member's post (such as @twin71) just click on the word "Reply" that is under their post. They will then get a notification that you have responded to them. As you connect with others on this page, it will help the entire community.

As you are new to this forum, please share a little about
your husband's health issues. For example, how long ago was your husband diagnosed with colon cancer? Is he currently receiving treatment? How is he feeling?

I look forward to hearing from you.

I just want to add. My mother passed within a month of diagnosis in 2006 from small cell lung cancer.

I’ve been the caregiver route, as well as now being the patient. My mom and I were super close. We played scrabble for hours. If I got a day off we went to the cinema and lunch. We were each other’s greatest support within family dynamics. Understood each other warts and all.

We often went on European holidays together as my father liked to do things differently when travelling. Yes mom and I loved the museums and art galleries and architecture and history too, but we also loved seeing where the locals lived and shopped and sitting in non tourist cafes with the locals.

It broke my heart watching mom fade - away especially once we knew there was no hope.

It was so very much a time to step up and be strong for mom - even though I was screaming inside.

My sister was there with me and that really helped keep a strong front both when there was hope and especially when there wasn’t.

We had to manage mom’s very much loved young grandchildren too. We did let them know how ill Nonna was. They were amazing with her. Gabrielle loved going to church with Nonna and me and making sure to wear clothes Nonna liked! It was beautiful.

My brother couldn’t handle it. His own pain was too high. He wasn’t there for mom both when we had hope and then when we didn’t. We don’t blame him but he now blames himself. That’s a tough issue only he can come to terms with whatever we say to comfort him.

You need caregivers to help you especially while there’s a lot of hope.

Positive energy is so powerful 🙏❤️‍🩹

I can sympathize. After a day of tests we were expecting at worst a diagnosis of GERD, and instead were told my husband had stage IV ge-junction cancer with metastasis to the liver and lymph nodes.

Surgery and radiation were not options. Since he was on a fast downhill slide, we pushed to get chemo as fast as possible.

At the low point, he could barely eat and all he could do was lay on the couch all day, getting up only to go to the bathroom. He was so weak that he was walking only 200 to 300 steps a day and had to use a wheelchair in the medical center to get to his appointments.

But after a month with 2 cycles of chemo things started to turn around. At the end of 2 months/4 cycles of chemo, he is functional again; and a CT scan showed a response to chemo with tumors shrinking and no new tumors.

This has been awful and overwhelming. I am sure it would have been even worse if children had been involved. But what I learned is to try not to fixate on the horrors of cancer and the dire predictions of survival rates. Individuals are not statistics, and each is different. Do your best to maintain hope and focus on success stories instead.

To send a private message, click on the name at the beginning of a message (such as @tenc87). That will take you to a profile page where you will see an option to send a private message.

@hardingv I’m so happy to hear how your husband is rebounding and treatment is working. Fabulous. So very important to ignore statistics! Every individual responds differently. As a stage 4 appendix cancer patient (treated the same as colon cancer) I am now NED.

Personally, I did start my cancer journey making peace with God. I didn’t expect Him to cure me but I did know He would help me and my loved ones deal with whatever we needed to deal with.

I then fought tooth and nail with a fabulous medical team. So important to have a strong trusting relationship with your medical team.

So very sorry to hear this. If you don't feel supported, is there any way you can ask for a second opinion doctor? Some docs just aren't personable, but then they at LEAST need an awesome, warm and friendly PA or NP!!! Join the caregivers group at colontown on facebook if you wish more. There may also be a virtual friendly mentor as part of Imerman Angels.org I had tried through ACS and Blue Nation, but this one was the one that connected after about 3 weeks. CRC is such a wild ride emotionally and I wish you peace in the storm.

@lmhgator80, I thought I'd check in and share a few resources.
You may find some of this information helpful as you talk to your young teens about your husband's cancer. It may be hard and confusing for them. They are at an age when a child searches for independence and separation. Interest in friends and self take priority. These websites might offer some guidance for all of you:
– Helping Teenagers When a Parent Has Cancer https://www.cancercare.org/publications/51-helping_teenagers_when_a_parent_has_cancer
– Support for Teens When a Family Member Has Cancer https://www.cancer.gov/about-cancer/coping/caregiver-support/teens

Others are sharing in this discussion that you might wish to join:
– Family dynamics challenging when a parent has cancer: Want to connect https://connect.mayoclinic.org/discussion/group-focused-on-families-and-parent-with-cancer/

You mention that you don't feel very supported by your hausband's care providers. Have you looked into getting a consult with an oncology social worker? It might help to talk about things. Most cancer centers have social workers. Here's an article written by Mayo Clinic oncology social workers to better understand all the things they can assist with:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

@lmhgator80, how are things today? How are YOU doing?

Welcome @tenc87. You will be able to send a private message in a few days. Learn how in the Help Center https://connect.mayoclinic.org/help-center/ There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

I’d also like to underline the benefit of sharing in the group discussions. By posting in the discussions in this support group you both benefit from the knowledge and experience of many members.