Does anyone remember me and my mom?

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  • steelrose
    steelrose Member Posts: 3,798
    edited May 2012

    I felt very sad about this post today. I admit that the post was hard for me to read... the graphic details... again, when posting in the Stage IV forum (as in ALL FORUMS), one must consider their audience. I mean, if I posted a play-by-play of my tumor extractions, the agony I was in, the chemo side effects, not being able to walk, and how I can't cope with any of it and want to die, somebody please help me... in the CAREGIVER'S FORUM... well, probably not appropriate. 

    To Michelle, if you're still reading... I know how hard it is to watch a parent deteriorate from cancer. It felt like the roles had been reversed, suddenly my Dad was the child and I was the parent. It was the single most difficult thing I've had to go through in my life, my own Stage IV diagnosis included. Your post showed that pain and I know you were trying to reach out to some old friends. I'm sorry if your feelings were hurt... you and your family are in my thoughts as you move forward. It's amazing how strong we can be in the face of these unimaginable, life altering events. Your love for your Mom will see you through.

    Rose.

  • mimi1030
    mimi1030 Member Posts: 700
    edited May 2012

    I am here but afraid to post because I am not sure if I am in the right place, I still see all the posts so I am unsure of whether or not I am in the right place. :(

  • mimi1030
    mimi1030 Member Posts: 700
    edited May 2012

    If I reply does everyone get the message because that will mean everyone that doesn't need to see my posts will. If I reply here does it go to everyone in this post?

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited May 2012

    You're ok, Mimi. Don't be afraid. You have enough to worry about. Keep posting, and I hope this transition time goes as smoothly as possible for you and your family.

  • sincitydealer
    sincitydealer Member Posts: 2,712
    edited May 2012

    It's okay, Mimi.  Your comments are in the caregiver section now.  If anybody from the stage IV forum wants to read this thread, they will find it.  If they don't want to read it they won't come here.

    Steelrose is a very bright woman.  Her advice to you is good.  Know your audience.  And she's definitely right about the role reversal.  I'm going through that with my Mom.  If it looks like you're only looking for support for yourself, they don't look too kindly on that.  We all know your post wasn't meant to hurt or scare anybody.  You're distraught over what your Mom is going through.  And you're right.  Your Mom's situation isn't a prediciton of what another stage IV person might eventually go through.

    Athena is also right.  Please don't quit posting.  You have a lot to offer, and you can give support to others at the same time.  This is the forum for moral support, but if you have questions or need information about treatment or want to offer moral support to the stage IV women then stage IV would be the place to post.  There are wonderful women on that forum like Steelrose who will help you.  I've grown quite close to some of those women, and I go there to try and support them as much as I can.  I've found that when I have questions I can usually get answers there rather than here because they know so much more than anybody in the caregiver section.  You just have to be very careful with the wording because the stage IV forum is a very special place.

    Peggy 

  • marie5890
    marie5890 Member Posts: 3,594
    edited May 2012

    Mimi,

    Like Athena said, you are ok. Dont be afraid. The moderators moved your post out of the "Stage IV" forum and put it in the "Caregivers" forum so the concerns that others raised, and their understandable reactions, has been addressed and resolved by trying to find the appropriate balance for everyone. 

    HUGGS to you. We hear your pain. Keep posting.  

  • dltnhm
    dltnhm Member Posts: 873
    edited May 2012

    According to the forum description, the Stage IV forum is for "stage iv, their families, and caring supporters". I don't think you were in the wrong forum according to the 'rules' Mimi, but based on some of the responses you received, at least you might be treated more kindly in this forum.



    Was some of what you wrote 'graphic' or 'scary'? Perhaps. But BC is scary and much of what occurs is graphic. And although I would not be considered a young mom based on some folks perceptions, I am still quite young when all is said and done. And I really dislike when I read posters ratcheting up concern for one age demographic over another. It pits women against women who are all going through this, coping with it, facing it with courage, grace, integrity, love, grit, peace, etc.

    I am thankful that when I posted a question early on in coming to BCO I was not lambasted and run out of dodge for not seeing all the rules and regs for particular forums. Sometimes, most times, we need to extend the hand of grace and assume the best of the other posters who start a topic rather than the worst. And I am talking as much to myself as I am to others where that is concerned.

    Peace be with you Mimi. I can only imagine what your family is going through.

    And for what it's worth, a mom of a 16 year old (I believe you wrote one of your sisters is 16) is a 'young' mom. And a mom whose daughter is getting married in a short time is also a 'young' mom.

    Hang in there sweetheart!

  • macatacmv
    macatacmv Member Posts: 1,386
    edited May 2012

    Mimi, I feel for you. I hope you are getting the support you need now. I was with my sister as she passed from BC. Watching someone lose their battle with disease is not easy. It is when we feel the most helpless and hopeless. Having hospice and kind medical people involved was very comforting for her and she did not "suffer" at the end as much as through the treatments. It was very peaceful and I was glad she was not in pain or struggling anymore. But I sure suffered because of the loss I felt. And when we know the "end" is coming we start our grief early. This will be very hard for you and your sisters, but you have each other. And you have this forum. I hope you stay with us and let us be with you as you go through this troubling time.

    Nancy 

  • mimi1030
    mimi1030 Member Posts: 700
    edited May 2012

    Hello Everyone,



    Thank you for your kind words, it means a lot that you are okay with me being here. I never meant to cause any harm to anyone, I have lived the cancer journey for 8 years with mom so the last thing I would set out to do is hurt other people who are going through this to. I knew so many people in the stage 4 forum I spent 4 years there and it was not the same then, they never shunned anyone regardless of how sad their posts were. If someone was having a bad day, or bad side effects, bad news from the doctor, they would or it would appear they would forget their own diagosis and offer there hand of friendship and just let that person rant and then move on. At that time it was their world they were still stage 4 and so where else do they go. I know that no one wants to hear anything negative, I understand fully about that, but I have no clue how to put frills on this disease. It brings the best and worst out in you, and it's never rational and it doesn't bend to reason. It's just crap! I can't pretend something is easy when it's not. My mom handles it better than we ever did. She humored it as much as she could. They told her 3 months, she said crap to that idea I have a young child to raise, Shelby was 8 when mom s diagnosed. Shelby will be 16 on the 21st of June. My middle sister is 30 and I am the dreaded 40 this year. My mom is young mom, she is 57 and as you can tell by the age gaps she started young and finished slightly late :D my momwas diagnosed on my 32nd birthday, and my mom has always responded to treatment. When it went to her liver she had one round of taxol and she was cancer free in her liver and still is to this day 5 years after diagnosis. Her brain mets are stable, they are not getting any bigger. We are dealing with the WBR which I think is what scared people about my post. The doctors were not keeping a close eye on her brain, being her2 positive she has that risk. In January 2010 they found the mets but there were to many for cyberknife so her only option was WBR, which is a terrible option. If there were another option you can be assured I would have pushed for it, but there wasn't. The WBR brought them to 3 small tumors less than 1 cm and that is what she still has. Unfortunately the long term effects created the problem, she reacted to it in that rare 5% go figure and so our problem right now is not the cancer really. She had cyberknife 2 times and they kept the 3 tumors at bay. Mom is funny some days, when I get to talk to her she asks me to call the hospice people and get her PBJ sandwiches, she said they are trying to feed me weird food. Anything to mom that is not sweet is weird food. LOL. So we have to make sure she has bread peanut butter and jelly on hand at all times.



    I got good news today, my sister got some cash from moms deposit on her previous home and so she is going to fly me to LA to see my mom. Shelby will also be 16 so we get to share the day as a family, if mom is not tired we will take her for ice cream, she always perks up when we mention cold stone :) she is okay let's go now before they run out of ice cream. She is so cute some times, I am not sure whether to laugh or cry. But I will get to see my mom on June 21st :) I will have to make sure I have twix and snicker in hand for mom.



    Cancer has shown me the best and worst of life in one swoop and I think that is why it's hard to put bells and whistles on the emotions it brings, right now I often catch myself going from one mood to the next all at the same time, I cry, laugh, throw fits and make no sense at other times. Its confusing and very tiring. I am a paralegal so my days are long and there are days I feel like I can even spell my own name, it's the craziest thing.



    I asked God that if it's her time to come home, then let her not know it. He answered my prayer, in her mind she is happy, free and cancer is not a word that comes from her mouth anymore. She does things that are odd to others and frightening at times, but there is no pain, no sickness, no cancer in that world and I will endure what I have to see to keep it that way because she is happy. She will laugh and we don't know what she is laughing at but the peace in her face when she smiles says a thousand words. Whatever it is she likes it and there is no reason for us to question it, that is her peace and we leave it at that.



    I hope my post has not offended anyone. I thank you for welcoming me and guiding me to where I need to be. Your kindness is greatly appreciated. Take care of yourself and I hope to see you here again soon.



    Hugs Michelle

  • kayfh
    kayfh Member Posts: 790
    edited May 2012

    Thank you Mimi. My biggest fear is, was brain mets. I watched my mom who had frontal lobe dementia disappear. I worried that she was afraid. But I think not. I think she was just not herself. Every once in a while we would see flashes of the woman she once was and it was almost sadder than seeing her unresponsive. I appreciate your description of your mom and where she is right now.

    Pax

  • JillThut
    JillThut Member Posts: 1,470
    edited May 2012

    So glad you are going to be able to go for a visit. While reading all of your posts I kept thinking tht I wish there was a way you could go be with her. Very happy that you shared the fact that you are going. I lost my mom in 09 to cancer. We were very close. She was my best friend. We lived in the same town so I was with her a lot. I felt like nothing was left unsaid and have no regrets about anything and I think that somehow made the loss easier. Enjoy your time spent with her.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited May 2012

    Yes - that's great that you finally get to see her. The human brain is so complex - some part of her will likely realize what your visit means.

  • kayfh
    kayfh Member Posts: 790
    edited May 2012

    Thank you Mimi. My biggest fear is, was brain mets. I watched my mom who had frontal lobe dementia disappear. I worried that she was afraid. But I think not. I think she was just not herself. Every once in a while we would see flashes of the woman she once was and it was almost sadder than seeing her unresponsive. I appreciate your description of your mom and where she is right now.

    Pax

  • thatsvanity
    thatsvanity Member Posts: 391
    edited June 2012

    When my sister was dying I couldn't read one word about cancer and I didn't, so I get it I really do. I understand now. I would've ran out of the house crying and sobbing if I read this while she was sick. I'm sticking only to caregiver and family section.

    :-)

  • mimi1030
    mimi1030 Member Posts: 700
    edited June 2012

    Hello there,



    I am driving to California tomorrow. My mom is not doing good, her liver is failing and hospice is giving her scheduled Morphine and another medication to help reduce the ammonia levels in her system. It will be a 12 hour journey tomorrow but I have to get there. I am not sure what I will see tomorrow but it won't be easy, but I need to be with her. I will keep you posted on how things go.



    Please keep mom is your prayers, thank you so much and take care of yourselves.



    Michelle

  • FilterLady
    FilterLady Member Posts: 407
    edited June 2012

    Mimi....bless your heart.

    I'm praying for you and your sweet Momma.

    Be careful in your travels.

    God bless you!

  • Omaz
    Omaz Member Posts: 5,497
    edited June 2012
    ((((Hugs Michelle))))   It is so hard to lose a parent.  Thinking of you.
  • Kindergarten
    Kindergarten Member Posts: 4,869
    edited June 2012

    Dearest Mimi, I do remember you and your mom. I started on this board in 2007 and you were one of the first women to respond to my concern of rising liver enzymes. I had a different screen name then!! When I did not see you on this board, I just assumed everything was great!!! I am so sorry to hear about your lovely mom!! I feel so bad that you are going through this. I am 59 and know your mom is too young for all of this. I will lift your mom and your family up in prayer daily!!!! Again, I am so sorry that you are going through this. Kathy

  • eric95us
    eric95us Member Posts: 2,845
    edited June 2012

    Drive carefully. God be with you, your mom and your family.

    Eric

  • midnight1327
    midnight1327 Member Posts: 1,475
    edited June 2012

    Take  care MImi and  may God be with you and your family. enjoy yr visit with your mum and remember we all will be  thinking of you. hugs and prayers. xx

  • macatacmv
    macatacmv Member Posts: 1,386
    edited June 2012

    Mimi, god speed and safe travels! i too am so glad you get to spend time with your mom and family. It is really hard to be emotionally present for some of this real hard part of life, but when you do all you can do there is less regret. I am praying for you and your mom. We'll still be here for you, all the time.

      Nancy 

  • sincitydealer
    sincitydealer Member Posts: 2,712
    edited June 2012

    Take care, Mimi.  I hope you can spend some time with your Mom.  I'm so sorry this is happening.

    Peggy

  • chrissyb
    chrissyb Member Posts: 16,818
    edited June 2012

    Michelle  have a safe journey and relish the time that you spend with your mom.  

    Love n hugs.  Chrissy 

  • TSB1
    TSB1 Member Posts: 46
    edited June 2012

    Mimi, you and your mom are in my prayers. I hope you had a safe trip and that you'll be able to visit with your mom. Hugs to you. I'm so sorry you're having to go through this.

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