My Biggest Fear Came True - Help

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heartbrokendaughter
heartbrokendaughter Member Posts: 3
edited August 2022 in Caring for Someone with Stage IV or Mets

Hi Everyone,

I'm so grateful that this community exists and that there are people who understand what I'm going through.

My mom was diagnosed with breast cancer in 1995 and has been battling it ever since. She has had stage IV since 2009. She has had multiple rounds of chemo and been on many many drugs for ER/PR + but has mets in her liver, bones and lungs. She slowed down a lot in the last year but when I got a call a couple weeks ago to say that her doctors had no other treatments that she could try, I was devastated and shocked. She has been sick for so long but has managed it like a chronic disease so I wasn't ready for that news. She is my absolute best friend and soulmate and so the news is crushing me. Her oncologist said that she has 2-3 months and again that was a blow because we thought at worst he would say 9 months. The time is flying by now.

Maybe this is a coping mechanism but when I learned the news I went into researching power mode. I'm trying to find one more treatment, a clinical trial, holistic remedies, anything I can that might help. I'm located in Ontario, Canada and so some have recommended she take high levels of CBD oil (no THC) and others have recommended turkey tail and reishi mushrooms. I am so desperate to try these with her but the biggest issue right now is her liver. She is going into liver failure I think and so I'm really concerned that any herbal remedies we try might make her worse and I'll lose her sooner. Her abdomen has been filling with fluid but she has been getting it drained. She has also had bad muscle spasms, a cough that never goes away, anemia and constipation.

I feel like I can't stop trying to find something to help her, like it's my responsibility to save her but part of me is also saying that I need to stop and just try to get as much peaceful, happy time with her as I can. I haven't been getting anywhere in my search. I guess I would like some guidance and advice on this. Maybe I need to focus on acceptance that this is the end of our journey on earth together. I keep feeling so much guilt, like I should have done more 10 years ago and searched for better treatments then. I don't know, I am so lost and I just can't imagine my life without her.

Please any insight would be so appreciated.

xoxo

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2022

    Hi heartbrokendaughter,

    We are so sorry to hear of you and your mother going through this. We are glad to see you found our community and hope our members can provide some advice or even their own experiences to you. By commenting on this post of yours, we are hoping to bump it up so it's more visible to our active members. We would also suggest posting this in the topic "Stage IV - no more treatment options?" as it might gain more visibility. We are hoping you can get more response through there. Here is the link to direct you: https://community.breastcancer.org/forum/163/topic...

    We hope this helps.

    - The Mods

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  • SarahMaude
    SarahMaude Member Posts: 287
    edited July 2022

    heartbrokendaughter, I am so sorry to hear about your mom’s situation. Peaceful happy time is a wonderful goal. Have you met with any hospice providers? I lost my mom to Alzheimer’s disease a year ago. After losing my dad to cancer 7 years before that, I became convinced that there are things we can do medically to slightly extend length of life at the expense of kindness and quality that I didn’t want Mom to endure.

    One thing I really appreciate about hospice is that they are really focused on both the patient and the family. What does your mom want? Hospice can also help you decide what is right on your mutual goals.

    If you are a reader, there is a book that I found to be very helpful called Being Mortal by Atul Gawande.

    Above all, do not blame yourself for being where you are now. I can tell that you and her providers have been very effective and kind in caring for your mom over the past 27 years. With my dad, I had to argue with the oncologist to stop treating him. They were ready to surgically add a feeding tube. I don’t think he would have survived the surgery. He was so weak. Instead, he was allowed to pass that day with my mom holding his hand, me with my hand on his chest, and my brother sitting close by. He didn’t die alone. That still comforts me.

    Hugs to you and your mom.


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  • heartbrokendaughter
    heartbrokendaughter Member Posts: 3
    edited July 2022

    Thank you so much mods.

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  • heartbrokendaughter
    heartbrokendaughter Member Posts: 3
    edited July 2022

    Thank you so much for your response, it means a lot to me. I am so sorry to hear about your parents, it sounds like you did your absolute best for them and I hope to do the same for my mom. My mom doesn't want to be in a hospice when she passes, she wants to be here at home. We haven't met with the palliative team yet but I'm trying to get that in order as soon as possible. I'm hoping that they can help me as I am feeling overwhelmed. At this time, I have decided to spend peaceful time with her and to take the blame off of myself. My fiance and I are getting married next summer but since my mom won't be there, we are having a small ceremony this month. My mom really wants to see us get married so it will be a very special time for us to have together. I appreciate your book recommendation, I love reading and find peace in reading books. I am sending love and positive energy your way, I am so grateful again for your kindness.

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  • Upstreaming
    Upstreaming Member Posts: 27
    edited August 2022

    Have you had your small ceremony, Daughter? My heart goes out to your and your family. It sounds like you had the right idea in hoping to spend peaceful time with her - but I know it's a time of overwhelming emotions.

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