Missing my best friend :(
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Lisa,
I am so very sorry that you and your family have to go through this. It breaks my heart to know what your children will have to go through but also the way you feel as I know it is exactly the way my mom felt. Mom cried very little through the whole ordeal. The only time she really cried was when talking about leaving us behind. The road ahead will be a rough one but as someone who has experienced this first hand I will answer your questions. 1) How will they feel? I will be honest, they will be devastated. But they will also be so greatful that they had such an amazing mother. My mom was amazing and often went above and beyond for us. My siblings and I often say we’d rather have 28 years of a perfect mom than a lifetime of an average one. 2) Who will be there for them? They will be there for each other. My siblings and I were always close, but over the last 6 months we have formed a bond closer than I could ever have imagined. They are my rocks, your children will find strength in each other. 3) How will they go on without you? They will never be without you for you are a part of them and they will see you in themselves and in each other. You will forver hold a special place in their hearts and will live on in their memories always. Your need for each other will never change. I need my mother more and more each day but she has shaped myself, my brother and my sister into the people we are today and has shown us enough love to last a lifetime. Take each day as it comes and live each moment to it’s fullest for it is these moments they will look back on for years to come. Please know that you and your family are in my thoughts and prayers.Sarah,
It’s clear how much you love your mom. How unfair for her to be taken so quickly while you are so young! It pains me to read your post, because I too have cholangiocarcinoma and have three kids (ages 16, 21, 22). My only regret and concern is how they will feel, who will be there for them, and how will they go on without me. I need them and they need me.dear SarahLindsay,
sorry about your loss, we here know to well what you are going though, i to want to scream and rant, and do , sometimes it helps and sometimes it does not. there is not much i can say except that your MOM will be with always..you will keep her with you in your heart and mind and one day we will all be together again…….ronSAFELY HOME
I am home in Heaven, dear ones
Oh, so happy and so bright!
There is perfect joy and beauty
In this everlasting light.All the pain and grief is over,
Every restless tossing passed,
I am now at peace forever,
Safely home in Heaven at lastDid you wonder I so calmly
Trod the valley of the shade?
Oh! but Jesus love illumined
Every dark and fearful glade.And He came Himself to meet me
In that way so hard to tread;
And with Jesus arm to lean on,
Could Ihave one doubt or dread?Then you must not grieve so sorely,
For I love dearly still;
Try to look beyond earths shadows,
Pray to trust our Fathers Will.There is work still waiting for you
So you must not idly stand,
Do it now, while life remaineth-
You shall rest in Jesus land.When that work is all completed,
He will gently call you Home,
Oh, the rapture of that meeting,
Oh, the joy to see you come!OK, now I am crying. Thank you all for your responses. When you are in this situation you truly feel that noone in the world could understand the pain and the loss that you feel. This site, however, has shown me that someone does understand…you. Thank you for that. I am so very sorry for the losses you have all endured. Nobody should ever have to feel the pain and emptiness of losing someone. My mom was an amazing woman, and to know her was to love her as is evidenced by the more than 400 people that came to her wake. She had a way of making you feel like you were the only one in the world when you spoke-her eyes, her focus, her attention was on you. She made you feel like you had something worth saying regardless of how trivial it actually was. She had a way…she just had a way!! I hate that for a while everyone was so grief stricken over the loss of my mother. But slowly, as to be expected, everyone went on with their lives. They returned home to their families after the funeral, they went back to their jobs after the weekend, they laughed with their friends again that night but for us, there is no going back. We will forever live this nightmare, we are forever scarred with the memories of her slowly slipping away before our eyes, we will live the rest of our lives without the love and guidance of our mother. I hate that everyone else gets to go back to normal…I WANT TO GO BACK!!!!!!!!!I don’t mean to rant but sometimes it’s all just too much and I want to scream…in fact, sometimes I do. Thank you all!! *HUGS*
Dear Sarah,
So many of us here know what you are feeling. Our experience was very similar to yours. My husband passed away Sept. 2, 2008 right at the time that your nightmare was beginning. He was 62 and had his first symptoms only 7 weeks before that. He too was otherwise healthy. We were told it was CC, also intrahepatic, and he didn’t have long to live (days to weeks) only 1 week before he passed on. So I truely do know how you are feeling & what you are going through. You are so right. People tell you that they know & understand how you feel & that it will get better with time. They just don’t know. They can’t possible understand how dealing with this horrible cancer changes your life forever, unless you have been through it.
I am glad that you found this site. I found it a few days after Jim passed on and it has been a Godsend to me. Without this site & all of the wonderful people on it I don’t know how I would be able to deal with all of this.
Please come back often. We are all here to help each other.
I would also like to share a poem with you that will hopefully help to easy your pain.
She is Gone
You can shed tears that she is gone
Or you can smile because she lived.
You can close your eyes and pray that she will come back,
Or you can open your eyes and see all that she has left.Your heart can be empty because you can
Sarah,
I am so sorry for your loss.
When I read threads like these, hear others comments and know my father’s story, I am left angry at our health care system. If such a good number of us find our way here, how many don’t know about this site or don’t use the internet or have something rare besides CC and on and on. It is such a sad situation.
Jan
Dear Sarah,
I, too, lost my best friend, my mom. And she was taken so quickly, just like yours. We were treated pretty badly by the medical establishment, also. I understand the horrible pain you feel, the surreal feeling. My mom was 64, which is young, but yours was even younger — I am so very very sorry for your loss. I feel cheated and I feel a huge sense of injustice — I always say “it’s not fair, it’s not fair,” and I just can’t get past that. I don’t care how immature and irrational I sound: I just want my mommy back, I just wake up every day in this living nightmare and fool myself into thinking she’ll be coming back. I know your pain, as much as anyone can really know something so personal and individual. No one can replace a mother – no one. Please feel free to vent your grief here, if it helps you — it has certainly helped me to have an outlet when no one else really seems to care.Many hugs and hopes of comfort to you and your family,
Joyce M
PS – Lainy, that poem made me cry, it was so beautiful! Similar to what was on my mother’s funeral card.
Sarah,
The cruelty of this disease knows no bounds, it is ruthless and, unfortunately, not easy to diagnosis or understand. I also think the initial symptoms for many people can be very deceptive, it seems many are suspected to have a gallbladder problem and we have all heard of people who get that removed so it sounds like nothing to worry about, right? Then you are told it has something to do with the bile duct and then they mention the liver and that is when the world stops and you stop breathing.
Everyone on this discussion board knows how you feel, we are all at the mercy of this relentless cancer. Please visit us often, the grief management section has been a godsend for me, reach out and you will be enveloped in love and understanding.
Patty
Sarah Lindsay,
You have found the right site. We all in one way or another understand your pain. Whether we are patients, caregivers, family, friends, we are all here because we have been effected by this brutal cancer. Your mom was way to young to die. This disease is unfair and relentless and many don’t have a fighting chance. I am so sorry for your loss, your mom should have had much more time on this earth. Feel free to rant, vent, scream, cry, people are hear to listen.
You and your family are in my thoughts and prayers
BarbaraDearest Sarah, I am so very sorry to hear what happened to your mom. There is no excuse in the world for you and your mom to have been treated so shamefully. It would not serve any purpose though to go back and relive what might have been different so one must go forward. With that in mind I wish to say that “moms” really never leave their children. She will always be in your memory and in your heart. She is watching over you all now, just from a different place. I found this message that I hope can help in some small way:
You will grieve my loss, but I have not gone. My body is beyond your reach, but my soul is touching yours. I am the one who enters your dreams. Caresses your face Hugs you. Misses you. I have not left, my spirit is with yours. I am all around you when you call. I am the gentle breeze when there is no wind. I am in the photo on the wall when you blink in disbelief. I am the song that enters your head for no reason, yet it reminds you. Don’t grieve that I am gone. I am with you, beside you, in you. I will be forever your mom.
Hello,
This is my first time here. Around September 2008, my mother started complaining of pains in her stomach and was not able to eat anything. This was the first time I had really ever heard my mom complain about anything so I pushed her to go to her doctor. She went and the doctor believed she was having a gallbladder attack but sent her for an ultrasound to confirm her diagnosis. Unfortunately our healthcare system sucks and moms appointment was not for almost 3 months, however being a nurse I was able to get it pushed ahead to within a week. Following the ultrasound, mom was called by the doctor who wanted to discuss the results with her. This is where my heart break begins. Mom went to the appointment, alone!!. Why not, there was never any indication anything was seriously wrong. This was Sept 3., 2008. This was the day mom found out she had spots on her liver and was referred to a general surgeon. To make a long story short, after going in circles and being completely disrespected by doctors, we were informed that mom had stage 4 liver cancer (intra-hepatic cholangiocarcinoma). It was too advanced to do any form of treatment. Over the phone, I was informed that mom had weeks to months to live. We were not even given enough respect to be told face to face that our mother was going to die. Mom wanted to go home, and we were going to respect her wishes. We had months right? and miracles happen every day!! This is when the doctor decided to visit. When he walked out of the room, I said “do you really think she only has weeks to months”, he said “No”. Thank God….I was not ready to lose her!!. He then followed his statement with “she has days to weeks”. We took mom home that evening and spent the next 10 days showering her with all the love we were blessed enough to recieve from her. We watched her slowly decline until she slipped into a coma. At 5:52pm on October 20, 2008 at the young age of 52 our world came shattering down. Mom passed away, and myself (26), my brother (28) and my sister (23) were left wihout a mom, without our best friend, without our world. Although it feels like a lifetime ago, it has not even been 6 months. I feel like we are living a nightmare and that any moment we will wake up. How could this have happened. I hate when people say they understand, they don’t!! I found this site and decided to share my story in the hopes that someone does understand. In the hopes that somone can help me breath again. Thank you for taking the time to read this.
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