Does anyone remember me and my mom?

mimi1030

Hello there,



I am not sure if anyone will remember me, but I spent a few years coming in here for my mom who was diagnosed with stage 1 her2 positive breast cancer almost 8 years ago. After 3 years cancer free it spread to her liver, she underwent chemo again and it banished the cancer in the liver she was cancer free for another 3 years. In January 2010 she was diagnosed with brain mets about 20 of them. She underwent WBR, chemo and tykerb. The tumors were reduced to 3 small tumors she had the cyber knife 2 times to try to zap the remaining. After 12 surgeries years of chemo and radiation, my 57 year old mother is in hospice. She began to forget things little by little, then she was unable to drive anymore. Then she became unable to understand or recognize simple things and then eventually one day she couldn't talk to us. We thought she had a stroke they place her in ICU but it was not a stroke nor was it the cancer. She had severe brain damage residual of the WBR she had 2 years ago, she now had dementia. My sister and I had to pack her up and move her to LA so my sister could watch over her but my mom began falling at my sisters house because of all the stairs, mom would wonder around in the dark and fall and hurt herself. Beside ourselves we took her to a Los Angeles hospital as thins we're declining so fast we couldn't keep up. Afraid she would fall and seriously injure herself we needed help. There is just us 3 girls, myself the oldest am 39, my younger sister who is 30 and the very youngest who is 16 next month. We are from England so all our family is back in the UK so we have no one to help us. I live in New Mexico my sister in LA. We packed mom and my little sister up and moved them to LA. My mom never lived the desert, don't blame her there, but she wouldn't move here so we took her to LA. The doctors did lots of tests and said there is no way we cando anymore brain radiation the damage is severe and the best thing you can do so she doesn't suffer is let her be and have some life free of sickness and chemo side effects. The tykerb destroyed her inside she could eat her diarrhea was uncontrolable. she was dehydated and didnt know where she was or who we were. It's awful to watch my young vibrant mother fade away from us. I am devastated I want to be with her but can't because I am getting married in September and money is tight I spent all my savings on my last 2 trips to California. I miss her so much and am afraid she will forget me. I try everyday to call her at hospice but she does communicate well, I just tell her I love her and miss her and hope she hears me. She won't likely be here for my wedding, she won't be there to walk me down the aisle. I don't have a father you see, she is my only parent. I hate what this disease has done to my family to my mother who is too young to leave me. She has not had any chemo or radiation for 3 months she is declining and the doctors don't think she will make another 6 months. She can't walk anymore and she is hallucinating too, she thinks she is feeding herself all the time and chews on her fingers thinking its food. She stares into space and my sister said its so sad to see her completely in another place. I wish I could hug her and kiss her, but I can't I am stuck out here and I can't even get her on the phone. Most days I teeter between sadness and anger. My sister gets to see her and I feel guilty because I can't, she all forget me first and I was the first to come into her life she won't know it's my 40th birthday in August which also marks 8 years to her diagnosis. Yes, she was diagnosed on my 32nd birthday. Nice present. I don't want her to leave me, I want her to be there at my wedding and see my children that I have not been able to have yet due to medical problems with my own ovaries, but I hoped soon to have help and bring grandchildren to her life. I feel cut off from everything and guilty because I can't see her and be with her. I need her to know that I love her and that's might not have been the best daughter but I did my best and I don't know if she knows that. It's torment every day having to listen to what bits of information I get, when my phone rings and it's my sister I dread what is on the other end. Cancer has taken everything from us and we are at the end almost and I am mad as hell. I don't know whether to scream or cry most days. How do u get through this? How do you prepare for losing your mother the only person who has ever been there. There will be no one to take her place, it will be an empty space that nothing can fill. I am not sure if anyone is left here that was here in the years I spent but if anyone has anything to offer on what to do that would be a god send.



God bless you all

Michelle

GatorGal

Hi Michelle,

I've only been on the boards since last summer so don't remember you and your mom. Sure sounds like you've been through a lot as a family. It is so hard when families are geographicaly separated. My mom and brother are in Florida, my sister in N.C., and I'm in Maryland. I know they wish they could be here to help me more but I am fortunate to have really good friends to help out. My sister, who is a nurse, wants to be here for every chemo, every scan, but she just can't. I kind of get how you're feeling. Relax. Even though your mom has memory problems, she understands that you love her and you can't be there in person. You do what you can do. I'm glad you have a wedding coming up. You can think about positive, happy things that are going on in your life. Maybe your mom won't be able to be there to walk you down the aisle. That will be sad BUT you can have pictures or videos for her to view. The important thing is that you are getting married to someone you love, who makes you happy, and yes, someone you want to have children with. Maybe your mom will get to meet them, maybe not. You and your sisters are doing what you can. Your mom knows that. Yes, it is sad that she is so young but that is something that is not in your control. She knows that, you know that, your sisters know that. Life does go on. You and your husband to be will have a good life together and will have good memories of your mom. You talk about the empty space your mom will leave. She will be leaving you with memories. Hold on to those memories. Journal those memories for the children you and your husband will have. You will miss her, but don't allow an empty space. Fill it! Love your mom, miss your mom, but remember that life goes on and you can take those memories with you for the rest of your life!

Mzmerz

I am new to the boards, but I wanted to say I am so sorry, this must be so hard for you and all your family.  I don't have any words of wisdom for you, bit know we are here for you.

LauraOntario

So sorry for what you and your family are going through.  My thoughts and prayers are with you.

CoolBreeze

Posts like these are very hard for me to read, knowing some day, maybe soon,  one of my children might write something similar.  I find them very frightening and heart-breaking, especially on days when I am fighting pain, like recently.    Every single day, I try to get up and face each painful day with grace and bravery, and then I read something like this that just tears me down and makes it harder and harder - knowing what the future holds for me.

I'm very sorry for your family. 

I think I need to get away from this forum.   

mimi1030

Thank you so much for being there and your responses. It's hard to talk to people who don't understand, I get critisized for being negative and I should think positive. I just look at them, and say okay so if your so knowledgable about how to be positive about your dying mother then please do share the secret, because I spent 8 years with positiveness but this is where it's at right now, so I must have had it wrong all these years so please share the secret. How do I remain positive when my guts are turned upside down and I can't sleep and my mom is dying. I really don't know how to be positive at this point in time. I understand people just don't know what to say, but try to be more positive is not quite what I expect to hear. Just to know that someone is there to listen, my sadness cannot be fixed and I am not looking for anyone to fix it because if I can't neither can they. I spent 8 years trying to fix everything so my mom would be well, but the odds were against us for the start. Such a small cancer they said. Is there such a thing as a good or bad size of cancer? Apparently early detection makes no difference or at least it wasn't for my mom. But I have to understand we all have our time and if it's our time it's time, no matter how we try to fight it. Is just hard because I have to suppress my feelings so people around me are not disrupted by my lack of cheerfulness every minute of the day, it's hard trying to fake it every day. Here i know everyone knows because they walk the same path at diffent levels, but it's still the same path. Thank you for your comfort it means so much. I will post how mom is doing frequently, it's going to be a long few months

Chickadee

I am so sorry for this painful time you have entered. Is it possible for you to call and speak to a hospice counselor where your Mom is? I think they might be able to listen and also help you with your sadness.

thatsvanity

I would read about hospice and the final days and stages of dying. It is so helpful and hospice.org has information on how to have the final days be the best that they can be in the midst of losing someone who you love to the bottom of your soul. There is always something we want to be better or different when a loved one is dying, but the most horrible thing to a person losing a loved one is that life keeps going when one is shaking their fist at the roller coaster of life saying stop everything, please world stop for me... But it doesn't work like that and we put one foot in front of the other and we cry a lot of tears. And we keep trying to understand why and we never will know why, until maybe when it's our time to leave our bodies.

mimi1030

Coolbreeze, please don't take my post as personal. Everyone's success in this fight is different my moms is one story. My mom defied the odds for 8 years, but her story doesn't mean it will be your story, I know people with the exact diagnosis my mom has had over the years and they are still cancer free 20 years later. They kept me going for the 4 yars I came in here. But my moms story is just that my moms story, and her successes have been many but she is tired of it and most people do not respond to brain radiation the way my mom did, which is unfortunate and sad. But it was too much for her, the doctors in my opinion were not checking her enough, her liver is still cancer free her brain is okay. My moms problem whole brain radiation and it's long term effects now 2 years later. But at the time it was the only option she had so there really was no choice. This forum has been my strength since mom was diagnosed 8 years ago and there are so many people here that are the reason I came back because they got me through a painful time, and right now is another painful time, but I by no means want to bring fear to anyone. Our path is not your path, always remember that because you could be the person 20 years from now that is still inspiring newbies who come here for help Ina fearful time. Unfortunately in these places there are those that while they put up the good fight, there story was not to be told 20 years down the line. I wished it would but mom has done all she can and she fought it well and we are greatful she is not in any pain and never has been through everything. Please know that this place has more to offer than anything anyone can out there who doesn't know what this is like, and that's what draws me back here. Please take care

CoolBreeze

Never mind, I don't think it came across the way it was supposed to.

BarbRocks

Mimi - I think you should contact a grief specialist or some other mental health provider. We are already scared and terribly aware of what we will endure and quite frankly, your post made me physically ill.  I know you feel the need to "talk" about it but please not to us. There are more appropriate forums for caretakers that you should look into.

Reneepals

Mimi,

I remember you and your mom. You are such a loving daughter and thank GOD. The love, care, hurt and pain come across in your writing. Being the patient, I don't think we realize the emotions and hardships you go through. The insanity of this disease changes peoples lives in the blink of an eye. What incredible loving people you and your family are. I am so sorry for this road, for you and Mom. I wish I could give you a hug.

steelrose

Michelle,

I've experienced what you're experiencing right now... in my case it was my father who had cancer. I'm an only child and I took care of him for 5 years. It was very, very difficult. So I truly do understand your pain, and I hope that you will find peace. I felt so defeated when my Dad died, so lost, but I realized that I was being very selfish. He was in a lot of pain and distress... I was trying to hold on to him when he wanted to go. We all have to let go eventually... of our loved ones, of our lives. At Stage IV this reality is ever present. No one here wants to die. But we also don't want to be a burden, a vegetable, or to cause our loved ones the kind of pain you're describing. I hope that you have a support system that will see you through this difficult time. I wish you all the best.

Rose. 

ibcmets

Mimi,

Sorry about your Mom.  You should post this in the caregiver & support thread.  I agree with Ann, this is not the thread you should go into detail with.  I understand you need to talk about what your Mom went through but I don't feel this is the appropriate place.

Terri

3littlegirls

 I am so sorry about your mom but I do have to agree this is not the right place.  We are mom's with kids and we don't need to be reminded of what is in store for us. There are women on here going through WBR and this will scare the crap out of them.  This may sound selfish but their are other places to post and get support. I don't mean to be rude but this is a place for our support and that story probably has had everyone in tears.  I hope you find peace with your mom's situation and I hope she is not suffering any pain.  

Take care,

Michelle 

chrissyb

Hi Michelle I am so sorry that you are feeling the loss of your mother even before she has left this plane of existence.  I know and understand your feelings of wanting her not to suffer and believe me when I say she is happy in her world.

Dimentia is always hardest on those who love us as they are the ones who have to bear the knowledge that we are not the person they knew.  For the person with dementia, they are happy and content as they are living in a time and place that has no pain nor fear for them.  I know this as I lost my FIL a year ago.  He had stomach cancer and dementia. Until the end, he was happy and pain free (due to the drugs that were being administered).

I understand that you have no family close as a support system so I would be happy to give you as much support as possible via PM as your post seems to have upset a few.  Again, I am truly sorry that you are going through this heartbreak.

Love n hugs.  Chrissy 

singletona80

OMG, this post just scared the crap out of me!!!!! Usually I ignore post like this that I don't agree with BUT I just had to let you know your post here is just WRONG !!!



The mods should remove this post.

TheresasFight

MiMi - I'm here for you if you need to talk... I think you and I have alot in common & I get what your feeling. I'm sorry that you're going through this. xoxox hugs

myangels

Hi Mimi,

   I'm very sorry to hear what you and your family are going through right now. I do wish the best for your Mom, hoping she will be comfortable and free of pain. However, I agree with several of the other posts here. I don't think this forum is the appropriate site for you to post on. Just reiterating, gals here are all stage IV, yes at different levels, but we support and encourage one another and don't need to read about how we will possibly become in our future.

Rose

mimi1030

Wow, goodness I was not expecting such negative response. I did not mean to harm anyone. I did post in the palliative care but no one reads those posts because who in here does or wants to, its not a discussion board i myself spent any time in, because rhe reality of why those posts were in there are to much to bare. My mom has stage 4 metastatic disease and the people I knew in this forum for 4 years would never have been this way even though they themselves had the same thing. I guess I realize they may not be here anymore but I got to know a lot of people and was hoping to reach out to them again. But I see I am not welcome here anymore. I don't have any answers to any questions I have been asking them for 8 years. My mom is not in pain and is not suffering it is her children that suffer now, is there anyway to make that easier, if I knew that answer I would not be here looking for help. I am sorry that I came here and will leave her with my apology because this was not about scaring anyone. Stage 4 cancer is a reality that my mom had to come to terms and her children also, did she cope some days yes, others no. But, my mom took care of cancer patients some good friends she lost to it and she was with them until the end because she knew first hand the trauma it brings to the family. The patient eventually has no knowledge of it, the Godsend in my moms case she is completely unaware, it is us that are aware and I was just hoping for anyone's input, because there are people here in the stage 4 forum that are children and not the patient.



My apologies to you all, and I will say farewell, the mods can delete all my threads as I will remove my profile as soon as I figure out how to do it. Take care!

holdontohope

So sorry for what you are going through with your mom.   But it seems like the caregivers forum would be the best place to post something like this. 

"For Caregivers, Family, Friends and Supporters--Here is a place to share your struggles on supporting and caring for a person you love, whether just diagnosed or in end stage.  It is never easy, but you are not alone."

You could gain support from others who are caring for loved ones.  I agree that the Stage IV forum is not the best place for a post like this.

sincitydealer

I remember you, Mimi.  You were posting when I first joined.  I wondered what happened to you and your Mom.  I'm so sorry you're family is going though this right now.  I hope they're keeping your Mom comfortable.

The husbands post here, too, but don't seem to get the same reaction to their posts as the daughters.  I love the fact that the husbands pour out their hearts here and look for solutions to their spouses' care.  There was a thread started not too long ago stating that the poster would no longer be responding to the men.  I didn't agree with that thread, and I hope the men continue posting, but there seems to be a double standard when it comes to the daughters who post here.  Some here will leap to the husbands' defense, but want to chase the daughters away.  Maybe it's the fact that as women, we're more emotional in our posts; although, I've seen some very emotional posts by the men.

I know you didn't intend to scare anybody.  I can see why your post might have scared some, and I know you would NEVER try to hurt anybody.  When it comes to moral support, maybe the caregiver section would be good, but if your looking for treatment options and such, then many of these women will help you.

Peggy

kayfh

Mimi could have been MY daughter, or your daughter. Just because she doesn't know the new rules doesn't mean her need for support should be rebuffed. Our feelings aren't that special that we can think it ok to exclude someone who is loving and losing someone to breast cancer. Maybe some people reacted strongly because Mimi told it like it is for her mom. It sucks. We are facing that, someday, hopefully in a long time, minus the dementia. Maybe it was fear that made some of us react negatively to Mimi.

MCTHO

Mimi, I remember you and your mom and often wonder how she was doing.  I am so sorry to hear the news.  I take comfort in the fact that God will rid us of this disease! (Isaiah 33:24)

Lauriesh

I don't agree that " just because she doesn't know the rules , her need for support should be rebuffed"

I think posters who told her it was more appropriate to post in the caregiver section were correct. She made it clear she was not looking for help for her mother, she was looking for emotional support to help deal with her mother's dying.

I don't understand people's thinking that us, who are dealing with our own impending deaths, and many of us at a  young age with young children are somehow the best person to dump their emotional and psychological burdens on. 

I would have never considered posting on a cancer discussion board looking for emotional support, from  other stage 4 men and women fighting for their lives,  when my mother was dying of cancer .  And , I would have never "told  it like it is" , as Mimi did here, to people who were, in all likelihood, going to face the same horrible end that my mother had.   It is incredibly insensitive.

Laurie

ango74

So sorry to hear about your mom! Ya'll have been through so much.  I know where I live they have a support group for care givers, you might want to see if they have one in your area. As hard as it is on me I know it is probably harder on my family and kids. 

Take care.

kayfh

Ok I realize that this is an area where we will not agree. That's ok. The original post was removed from the stage IV discussion group, I think because I am posting the Caregivers etc. forum. At least that's what is says at the top of my page.

Just my opinion, but I think that the trauma of breast cancer affects how we view the world, react to it, and interact with it. Sort of like we're a bit punch drunk. That's just my opinion and no other poster has to by into my theory:)

1Athena1

Mimi, I am sorry that some people are so incredibly self-centered that they prefer to alienate others than take care in where they step. Very sorry to hear about the pain you are going through with your mother. I will NEVER be ready to lose mine. Grief brings out the best and the worst in us.

Sincitydealer - I see the double standard you refer to and agree. Some here are projecting.

Let's keep BCO peaceful. To quote Bill Maher, "NEW RULES": If you are feeling bad, try staarting your own rant thread, and don't tread on the rants of others. I am dead on sick of this crap. I really am. It's got to stop. Self centeredness can cause incredible pain in others.

1Athena1

Interesting....this was taken off "active topics." That means less support for MIMI, a caregiver whose apparent crime is to be a loving and concerned daughter. Damned shame!!

YramAL

Athena-I'm seeing it on active topics.....

Mary 

1Athena1

Good.