Caregiver support needed

CQuezada68
CQuezada68 Member Posts: 4 Member
in Colorectal Cancer #1

My name is Christy and my husband is Javier. Javier was diagnosed with adenosquamous carcinoma of the colon . The tumor grew outside his colon and was the size of a melon when it was removed. It was Stage IV. It is rare and aggressive. 3 weeks after surgery,the cancer has returned. We underwent radiation to the tumor on his spine to relwve the pain and allow him to walk again. We are now in Chemo. First therapy is down , not good. Huge drop in wbc , low BP.

As his wife and caregiver i struggle most days and i am working full-time with a very understanding company. I am sad and frustrated and feel veey alone in this journey

My husband's stats

Male , 55

Diagnosed July 2024

Prognosis 6-12 months

Adenosquamous Carcinoma no specific origin

Chemo: Folfox6

Comments

  • Savahna
    Savahna Member Posts: 1 *
    #2

    Hello Christy,

    I'm sorry for your struggle.

    I identify with all you are relaying. It is good that your employer is soft. Cancer is a familial disease. So, we as caregivers also go through the disease process.

    Are you taking care of yourself? I only ask because we tend to slide ourselves into the shadows. Sure there will be times when you don't do dishes or laundry or shower. Give yourself some grace.

    However, do eat everyday- just a little something, do brush your teeth every morning, do something you yourself enjoy every couple days. A little longer shower with a sugar scrub scent you love, or get a hair cut, these are grooming items. But caring for ourselves has many dimensions. Sleep is so vital. Good nutrition. A little bit of exercise. Positive thinking time- time where you don't allow the bad thoughts or fears, only good thoughts and grateful thoughts.

    I'm lonely too. Even with people around me....

    Just that simple permission to take care of yourself is important.

  • slc50
    slc50 Member Posts: 3 Member
    #3

    Hi, Christy…. My name is Stephanie and I’m new here. I hope you get this message and are holding up okay. I wish I could give you a gentle hug, as we both seem to be going through so much of the same things. My S/O was diagnosed with stage 4 metastatic colon cancer following his very first colonoscopy at the age of 51. They found a mass in his Sigmoid Colon. It’s a very long and complicated story to get to now…. Chemo, radiation, surgery to remove the sigmoid colon. What brought me here is that all my “friends” and family have bailed on me since he got sick (January 2024) and I have no one but him to turn to for support.
    This could turn into a really long post…… please message back if you’d like to chat, I’d love to connect with you,

    Stephanie

  • Div15
    Div15 Member Posts: 3 Member
    #4

    hi Christy,

    I feel for you. I love what Savahna said. Take care of yourself girl.

    Some days are better than others and when they are having a bad day you are having a bad day. It’s so hard to keep everything running, track his medications, appointments , food, water, supportive care appointments, my own work, my two kids . It’s a lot🥲

    Please let me know what might help. Do you want to chat

  • CQuezada68
    CQuezada68 Member Posts: 4 Member
    #5

    Thank you for all your thoughts and advice. My husband passed away Nov 26, 2024. 4 months after his diagnosis. This has been a difficult and sureal journey. He is missed dearly.

  • Div15
    Div15 Member Posts: 3 Member
    #6

    I am so sorry for your loss!!!!

    How are you holding up?

    Do you want to talk?

  • slc50
    slc50 Member Posts: 3 Member
    #7

    Dear Christy,

    You and your family have my deepest condolences. I’m here if you need to talk, feel free to reach out anytime! Hugs and love to you… May you find comfort in the days ahead

    Stephanie

  • CQuezada68
    CQuezada68 Member Posts: 4 Member
    #8

    @Div15 @slc50 Thank you so much.

    Some days are harder than others. Dec 26 was one month , and i still feel like he was going to walk through the door at anytime. Today I brought his ashes home, a very emotional day.

    As a caregiver and advocate for the 4 months of his cancer journey, i feel like there was so much more I could have done and yet a sense of relief from all the things we do daily for our loved ones.

    Now i just feel empty, lost , abd trying to find my way .

    Thank you again for checking in .

  • Savagely
    Savagely Member Posts: 3 Member
    #9

    I am sure every day is a battle to put one foot in front of the other. The adrenal curve hadn’t abated when you were thrust into this horrible stage of grief. My husband is stage IV EGD Cancer and I understand the isolation that this journey creates, and I am not as vocal as I can be when I need emotional support. I am sensing this may be the case for you as well. Reach out to friends and tell them how you wish to be supported: a walk once a week, a cup of coffee every other week, a movie once a month. Family and friends will likely be honored by your honest vulnerability and the need to be needed. Reach out here. Reach out to me. Only a competent and caring spouse has the self-awareness to reflect on the journey and wonder why. It is hard for me to accept that there really is nothing more to done that hasn’t been done. Honor his memory by caring for yourself.

  • asiroske
    asiroske Member Posts: 2 Member
    #10

    Wife has been diagnosed with colorectal cancer and is having extreme difficulty with chemo. She's on a week break and side-effects are worse

  • Savagely
    Savagely Member Posts: 3 Member
    #11
    https://csn.cancer.org/discussion/comment/1720069#Comment_1720069

    FLOT?

  • asiroske
    asiroske Member Posts: 2 Member
    #12
    https://csn.cancer.org/discussion/comment/1720071#Comment_1720071

    Capecitabine pills and oxaliplatin infusion.

  • iron9nadin
    iron9nadin Member Posts: 7 Member
    #13
    https://csn.cancer.org/discussion/comment/1720072#Comment_1720072

    A friend shared her success with fasting to heavily I reduce symptoms from oxali. Another friend recommended a book by Mindy Pelz "Fast like a girl". The book is great and references wbc increase intensely after fasting during chemo.

    I'm trying it this round of chemo. So far, I am very happy with fewer side effects this time. I started Sunday, no solids, only water, tea, coffee ok; no sugar. My friend said she consumed bone broth as well. During and after infusion, I had no nausea, stomach heavy, run-down feelings. So far, I'm sold on it and goal to stick it out through wed after I get the pump off

    Little Backstory: diagnosed July 2024 rectal stage 3c. Did 5 rounds of folfox, then 28 sessions of radiation with capecitabine pills. I had 3 weeks off over the holidays, and just had day 1 of round 6 folfox today.

    Sidebar: I do a lot of alternative therapies as well, which i credit to much of my progress. High dose Vit C IV, acupuncture, supplements, diet overhaul, naturopath, light physical activity, visits with friends, support group/meditation, etc.

    Sending you and your wife warm healing from Hawaii. If that book interests you, it's on Amazon $15. After I bought it, 2 other people, unrelated had suggested it to me. Best wishes.

  • Div15
    Div15 Member Posts: 3 Member
    #14

    hi all,

    First of all, I just want to share that it feels good to see people sharing, caring and just trying to help it each other out. Thank you to all of you❤️

    My husband has had 6 rounds of chemo every two weeks and has lost a ton of weight. He has not had solids since we started and is on a high calorie ensure or high calorie boost (I make smoothies with peanut butter, Greek yogurt, dates, banana, berries, boost or ensure) . That is the only thing he can have. As far as calories go, even with this he can only have about half of what he needs to be having daily. I have tried giving him solids, he takes one bite and pushes it away. I’m struggling with what to do, I hate that the smoothies have so much sugar but that’s the only thing he will have. We are taking CBD and it’s helped but not that much.
    do you’ll have and advice for me?

  • CQuezada68
    CQuezada68 Member Posts: 4 Member
    #15

    Javier was the same way . His appetite lessened so quickly. The one thing is we let him eat whatever he wanted. No worries of what nutrients are there , because any was something.

    We did purchase unflavored protein and would mix with the things he did est of drink to give a boost

    Try not to "force" or "push" more food .

  • slc50
    slc50 Member Posts: 3 Member
    #16

    Same here. I’m the caregiver to my partner and the rule in our house is “whatever you want, you get”. If it sounds good, if he is able to have it (medically), go for it. Even the dietitian told us, when you’re on chemo, nothing matters as long as you’re getting something in…. Food, water, etc. While I agree not to force eating, make sure he keeps at least trying…. Even just little sips, little bites. My heart is with you both.

  • Savagely
    Savagely Member Posts: 3 Member
    #17
    https://csn.cancer.org/discussion/comment/1720078#Comment_1720078

    My husband went through this as well. When I told his doctor he got a Butterfinger candy bar for breakfast, he said, “whatever works, don’t obsess on what he’s eating. He needs calories however he gets them. Stomach/Esophaeal Junction CA Stage 4A. He had 8 chemo treatments and surgery but it was the combo Capcitebine and Radiation on his new stomach that drove the nail in. He was on 3 oral meds and a Scopalomine patch. What worked? Cannabis (THC) sorbet. One teaspoon and quick absorption-Boom. Gone. So effective, his doc was excited and took notes as he has throat CA patients who can’t swallow.

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