Needing support

Beesknees1217
Beesknees1217 Member Posts: 1
edited December 2022 in Liver Cancer #1

Hi,

 

I am really hoping to find some support on here as no one in my life gets it. I am in my mid 20s and my mother's only caregiver. Most of our family has already passed and I am not getting a lot of support from friends.I also have a high stress job so I am starting to feel extremely burnt out in all areas of my life, but I have no outlets. I understand how important it is to take care of myself first, but a lot of the time now I feel just too tired. I feel most days I am just treading water and just trying to get through it. I feel like no one in my life understands how difficult that is. I am disapointed that my work performance has gone downhill recently. I feel like I am failing as a friend. I feel like I'm not doing a good job as my mother's caregiver. I know that I am actually trying my best, but my best right now is about half of what it used to be and it's just extremely frustrating to me. Have you felt this way? What do you do?

My mother was diagnosed with stage 4 cholangiocarinoma last summer. She did one round of chemo but she experienced many negative side effects. She did not like how she would just be feeling better and it was time for treatment again. The scan showed slight growth after the treatment, and my mom has been very abivalent to treatment ever since. She feels since the cancer is very likely to be uncurable, she would just like to focus on enjoying life and not being sick. I really understand that, but I feel she should still follow up with her doctors to manage her symptoms and to help her live as well as she can. She has cancelled or just did not show for a lot of appointments.  Now, the cancer has spread quite a bit and they reffered her to hospice. She has only learned of her prognosis recently, as she wished not to know before. So I carried that she most likely will not have a lot of time left alone too. It was extremely stressful to be the only person that knew and I have been sliently freaking out about her not getting the resources that she needs. Now that she knows, not much has changed and she immediately shuts down any discussion of how she's feeling, what she wants, ect. She doesn't want to focus on the sickness and I don't want to either. I want to enjoy the time I have with her. I don't want to argue. But I feel that since she's not really dealing with it, someone needs to, and that's me. 

Deep in my heart, I wish that she had tried treatment more but I can never express that to her. I can't imagine what the treatment must have felt like and the pain she is in right now. I have never wanted to shame her for her decisions and I didn't want her to do treatment because of me, but it has been really sad to watch. Am I wrong for feeling this way? I just know how much she loves life and doesn't want it to be over yet. I see and hear so many stories of hope and survival. It is sad to know that she won't have a story like that and I feel that she didn't fully consider her treatment options before wanting to forgo.

This experience has been extremely lonely and isolating. What do you do to combat this feeling? I have tried reaching out to people close to me, but I think they just don't know what to say or do. I know there's not a lot to say or do but it has been a huge let down. I don't want to drag them down either. I know its depressing to talk about and I wouldn't even want to talk about it all the time, but I feel like I am now bursting at the seams because I have supressing so much. What are your strategies to ask for support? How do you connect with others during this time? 

I would truly appreciate any advice and guidance for how to navigate all of this. Thank you so much for reading. 

Comments

  • CancerFreeSunny
    CancerFreeSunny Member Posts: 76 Member
    edited July 2021 #2
    At the end of the day, your

    At the end of the day, your mother has made a choice about not continuing treatment. The doctor may have really explained what her options were about and she decided not to go through the unpleasant treatment again. My mom remained silent about her ilness, never wanted to talk about it, never complained but after her death I went in her closet and she had boxed everything up neatly lableling everything. That was something my mom would not normally do. Patients have the uncanny ability to sense their time might be shorter and they prefer to spend what time they have left enjoying life, taking care of their bucket list, arranging things for the family. They can do this rather quietly because they do not want to draw attention to themselves. They want a peaceful ending. I think your mom wants one too. This won't be popular with you but it sure will to her. She wants to convey that to you, how she wants to live her remaining days. 

  • Harmanygroves
    Harmanygroves Member Posts: 483 Member
    edited July 2021 #3
    BeesKnees - Support for You

    Dear Bee -

    I'm so sad that you've been so alone in dealing with this. I was just checking out the various posts in this board, and I'm usually in the uterine cancer board, but saw your post. You are so young to be a careprovider to a parent, but I was 22 when I was taking care of my dad. It's just such a heartache. It does sound like the absolute best thing for you right now is to seek some counseling help nearby you so that you can get some good support and some strategies to use. 

    I would advise that mostly, tell your mom how much you love her. Tell her what you think and feel. Share memories and happiness if you can. Eat some pie together with ice cream. Laugh a little!

    You may need a massage, accupuncture, to jump on a trampoline, to swim in the sea. You. Must. Take. Care. Of. Your. Heart. 

    Sending you a big hug from Oregon, and please know that it has always, always been your Mom's choice. Just honor it, and love her--and take care of your body and spirit. 

     

  • mari9898
    mari9898 Member Posts: 3 *

    hey I'm 24 and diagnosed with liver cancer, HCC specifically. I too was alone and felt that people my age didn't understand what I was dealing with. you can always reach out to me, Iam currently undergoing chemo and have now came to conclusion that I need to shave due to the hair falling out in clumps.