1

(14 replies, posted in Introductions!)

Dear John,

You truly are fortunate. If you don't mind my asking at what stage were you diagnosed ? If early, how was it detected ?

I lost my Mom to this curse and each day i spent asking what we did wrong. She had a very healthy lifestyle, but She was detected at the last stage. Just wanted to know what could have we done.

Stay blessed.
Dee

2

(5 replies, posted in Grief Management)

Dear Ilias,

I can truly understand what you are going through. I couldn't cry the day my Mom died. She is the person i love the most, always have and always will, and yet i couldn't cry. The day She died, i cleaned Her wounds, dressed Her and cremated Her, yet i couldn't cry. i spread Her ashes and prayed, yet i couldn't cry. But every single day since then, i have cried. i dream of Her and feel Her, but there are many moments when i feel alone, very alone. Every day i wish i would not be haunted by the nightmares we lived. But those memories are invaluable because they are all i have. Just try to take it one day at a time. i know the guilt surrounding our hearts, the grief and the sorrow makes living insufferable, but talk to your Mom. She is here, She is listening and have faith in Her, She will answer.

Hope you and your family find the peace and comfort you truly deserve.

From one child to another, love and peace.
Dee

3

(14 replies, posted in In Remembrance)

I am sorry to hear about your loss, Ilias. May your Mom, help you and your family fight through the grief. It doesn't get easier, but i hope you find some peace knowing that she is at rest now.

I hope your day be blessed with the beautiful memories of your loved one. Wishing everyone and their loved ones, who has been deceived by this horrible disease, the strength and peace we rightfully deserve.

5

(21 replies, posted in Grief Management)

Dear Ilias,

It feels like medicine has become more of a business rather than the noble service it was once referred to. I was in India and my experience of being cut off was very much like yours. I wonder if doctors would convey the news of their loved ones dying to their family with the same empathy and compassion that they bestow upon their patients.


I truly agree with Lainy, in what she says about telling them it is ok to go. My Mom was on the ventilator when i could not bear to see Her suffer any more, i told Her it was ok to go, we will all be fine. She could not talk but i still remember the relief in Her eyes.  "I love You" are 3 words but can say everything you mean to. It doesn't get easier but at least the pain we endure would be ours and our loved ones have the peace, comfort and freedom they so rightfully deserve.


Keep calm and travel on. She needs you more than ever. i pray for both of you to find the courage and strength to push through this darkness and welcome the light.

From one daughter to another.

Love,
Dee

6

(11 replies, posted in In Remembrance)

Thank you for your kind wishes, Darla and Amir.

7

(21 replies, posted in In Remembrance)

May your day be filled with kind memories and reminders from your Dad.
My heart goes out to you, take care.

8

(11 replies, posted in In Remembrance)

Thank you all, Lainy, Gavin, Shellina and Clare for your kind wishes.

@Lainy - Not familiar about a book ?

@Shellina - That was what I read, but just remembered bits and pieces of it. Thank you for the complete quote - think about it everyday and wished so very much that it were possible.

9

(11 replies, posted in In Remembrance)

Thank you, Lainy for your kindness as always. I dream of my Mom often and keep a note of Her every visit and thank Her each time. Thank you again, for sharing the beautiful thought of doing this.

Read this a few days ago and keep thinking about it :

If tears could build a stairway, i would climb right up to heaven and bring You home

10

(11 replies, posted in In Remembrance)

If god had a heart, he wouldn't do this to keep us apart
                             But i still have hope, that someday
                  In this life and beyond, we will have the fortune
                  To know You again and share the same beautiful bond
                      i love You Mom, i will always keep loving You .....

                Happy Birthday Mamma, my Hero, my Angel, my God
                     You just didn't give me birth, You gave me a life
                                       [Dec 9, 1956 ~ Forever]

11

(7 replies, posted in Introductions!)

Dear Stacie,

When my Mom was diagnosed, and was admitted into the Intensive Care Unit, the doctors thought She had a week, two at the most. But She proved them wrong, She fought as hard as She could. I was by Her side the entire time. I understand the hell one goes through when you watch the strongest person in your entire world become so weak right in front of your eyes. Everything happened so quickly that we never had the chance to tell Her what was killing Her. She did inadvertently find out, but we could not tell Her. It would have broken Her will. She would have refused treatment if She knew we were not going to win this battle. But a day before She passed away, I did tell Her because somewhere deep down I knew She deserved the truth, everyone does. She was on the ventilator and not responsive but I would like to believe She heard me. I had never lied to Her in my entire life, but I wanted to protect Her in every way possible I could. It is a hard decision to make, I understand. The only thing that saddens me even more, is that no matter how much we love someone, we can't take away their pain. I prayed relentlessly, to spare Her and take me instead. I live each day with my own grief and burden but the only thing that comforts me to know is that my Meemo is not suffering any more.

Love,
Dee

12

(9 replies, posted in Introductions!)

Dear Darla and Kerri,

Reading your response above Darla, it felt like I was speaking out loud. I lost my Mom in April, 2013. She was diagnosed in February, 2013 as well. All my life She has been my best friend and the only one I could ever talk to. I don't have anyone to talk to and try to bury myself with work to get through "one day at a time". When you said "Supposedly everything happens for a reason, but what reason can there be for this?". I have been thinking about this since the day we entered the hospital. When you said "I know that even if he had survived any length of time, he would not have had the quality of life he deserved so for that I am grateful." this is what i think that helps me sleep at night sometimes. The grief and pain doesn't good away, but I still talk to my Mamma everyday and imagine She is talking back and smiling down on me.

My heart goes out to both of you and hope that you find the comfort you truly deserve.

Take care,
Dee

Dear Desiree,

What we are going through, is our burden. I know we would not want our Moms to suffer. My Mom was in pain. The day they told me She had cancer, somewhere deep down, I knew that all was lost. If someone asked me, was Her going away so quickly OK ? Yes, I could not bear to see Her in the hospital, lying down helpless, with Her spirit broken at the mercy of doctors and nurses who remembered us as a disease and a bed number. Our lives were over, the day She was admitted in the Intensive Care Unit. My anger,my sorrow, my frustration is to what led us there. Why She had this disease? No, that's the part I don't understand.

Now, when I read or hear the news I pay attention. There is a lot of suffering and pain around and yes there are those who are happier and without a care in the world. But no one ever said life was fair. I close my eyes and picture hugging my Mom and try to breathe,it helps. I try to visualize Her smiling face and joyful eyes and sometimes that help me sleep. She is not in pain any more. That is what I try to tell myself when I cry hard. Watching someone you love so much die helplessly, changes you in more ways that you can imagine. That is something I try to remember, it is not the same any more.

I try to read, walk, watch tv, knit, clean the house, work, do anything, anything that keeps me distracted. I try to exhaust myself physically so that I can try to sleep at night. I try writing to Her as often as I can. I still talk to Her like She is listening and kiss Her goodnight. Sometimes it helps, sometimes it doesn't. But I try, because I know She would want me to. Sometimes, just listening to the fridge hum and keep breathing helps. Just breathing helps. When I have to let it all out, I do, coz if I don't cry, it feels like my heart is going to burst. My husband tries his best, but this is my burden. No matter how much some one loves you, they can't take your pain away. The universe was not designed that way. It is cruel, and I don't understand it, I don't want to coz I am human.

The grief, the pain, doesn't get better,at least for me it doesn't. I am starting to realize maybe I have to learn to live with it. Like you, I don't have a lot of people to talk to who really understand. This is not something, that someone who hasn't gone through understands. For them it has been 'n' number of days/months/years since the 'incident' happened and you should 'move on'. Well, I didn't really ask for advice or sympathy so I am not obligated to listen. I am not trying to fight anymore, I am just trying to learn how to live with it. Please don't hesitate in emailing me or if there is a number I could reach you at, I could call you over the weekend too.

Take care,
Dee

Dear Desiree,

Thank you for writing. Pretending to be normal everyday is exhausting. I wish I could say that my grief is getting better with time, but truth is, it isn't. Part of me still doesn't understand what really happened. It is very painful when you realize what you are missing everyday. I couldn't take care of her enough. My grief is probably my punishment. Maybe death is not the worst thing that can happen to someone. I wish someone gave a lesson on how to go on living.

May you find the comfort you deserve soon.

Take Care,
Dee

Dear Desiree, Lainy, Darla,

I am sorry I haven't written in a while. It gets harder everyday. The numbness keeps increasing. I don't feel happiness, I don't feel beauty. There is just a siniking feeling of loss and pain. My eyes are filled with tears almost always but I try to pretend to be ok and my "good old self" when I am around other people. But it sometimes, its hard to pretend. I hide at my desk and work and cry. Sometimes, I hide in the ladies room and cry. Somedays, it feels ok and then all of a sudden it hits me. I pick up my phone, call my Mom hoping I will hear her voice and when I don't, my world falls apart all over again. You know when you have a nightmare and then you wake up realizing, thank God that was just a dream. It just feels like I can't wake up anymore. I live my worst nightmare every single minute of my life. Sometimes, I don't want to go on. I swear I wish it would all end. I used to love my life. Now I can't tolerate it.
I know Mom would want me to go on but it feels pointless without her. I owe everything I have today to her. But she was all I ever wanted. I still have my Dad, my husband and my Brother, but no one is Mom. I don't share too much with them, men have a different way of dealing with grief and it ends up upsetting me even more. Like you, I have pictures of my Momall over my apartment and wear a locket with her picture inside of it. Maybe she is watching over me, but I so wish I could just hear her voice one more time. Know that she is ok. Not alone, not in pain anymore. 

Thank you as always for listening.

Lainy, I have always wanted to tell you that you are a very special person. We have never met and yet each time that I have read what you write, since the very first time I joined this board, it brings me tremendous comfort. A disaster like this could leave one very lonely, and even little things matter. I, too like you believe in an after-life and even reincarnation. I could be crazy but I want to. I don't want to feel like having lost Mom forever. Mother's day is going to be very difficult because just a month before, I was holding my beloved Mom's hand as she was slowly passing over. It hurts like hell and I cry more times than I can count, but I am extremely grateful to you all for your warmth and kindness. Friends I know have not even been remotely courteous enough and I really don't care. I took up your suggestion and have started logging as well. Hopefully, I will get to see and talk to my love, my Mamma everyday.

Lots of love,
Dee

Dear Lainy and Darla,

Thank you all again for your kindness and support. Sorry I haven't been able to write in a while. I am still trying to come to terms with what has happened. I see my Mom in my dreams almost everyday and sometimes she even speaks to me. I talk to her everyday like she used to, maybe she can hear me. It is very difficult, seems impossible many a times. I am trying to take it one day at a time. Thanks you all as always for listening.

Love,
Dee

Dear Lainy/Clare/Gavin,

Sorry I haven't written in a while. I am back at work now. I still have trouble sleeping, wake up crying almost everyday. I can't talk to people anymore. Suddenly, the whole world seems happier. I am trying to stay put, but life as a routine seems very pointless.

My mom kept asking me in the hospital " WHY?" - Why was this happening to us. I kept telling her not think about questions we don't have answers to. She would just close her eyes and pray. I have seen her call out to God when she was in pain. I saw the strongest person in my life crumble. People like us not only had to watch the people we love the most die, we had to watch them suffer, for whatever time period it might have been.

I am an engineer. I am wired to analyze, to reason. My mom was the healthiest and the strongest person I knew. She never smoked, drank alcohol, she did not eat junk food or spicy or oily food. She exercised everyday and had a better lifestyle than I do. She was only 56. Her doctors told me that they were surprised to see her reports. I understand that maybe this dreadful disease might not completely dependent on our lifestyle, then if it is our immune system then what else affects it. You won't know you have a cold till you sneeze. And a disease as life threatening as this, does not show any vital symptoms till at the very end. We claim that science and technology have made a lot of progress today. We can build a spaceship to moon and yet we don't understand how the human body really works. Countless people, innocent people die of billions of types of cancers every day and yet there is no great awareness on cancer prevention. I don't understand what's worse, the disease or its treatment. What else are you supposed to do when you play by all the rules - run to the doctor each time your stomach hurts ? I keep replaying all the years I can remember - I can't find a reason WHY. I have a million theories but they all seem like a fancy hypotheses. People tell me, its over, there isn't any point, let it go. I lost the person I loved the most. I watched her suffer, I had to pray for her death, I had to watch her die helplessly. I am sorry - I can't let it go.

She played by the rules, she is a good person, a great soul. My life would have been very different if this happened a few years ago. She gave me my life - she made me. I haven't been able to pray in a while. I don't think I ever will be able to. Pain of this magnitude, changes you. I am angry and I think I have a right to be. Yes, faith would tell you to be grateful for what you have, I am and I have always thanked God, my mom taught me not to pray with an agenda. She taught me to pray with my heart and soul, not because of fear. It could be worse, there are many in the world who have gone through worse. I understand that. But there are also those who are happier. People who don't take care of themselves and yet live happy, content lives, who don't have to suffer and yet die a peaceful death. Then why were we chosen - was my faith all these years pointless? Maybe God was kind to my mom, to have taken her so quickly, but were we people bad enough to not even get a second chance?

I am sorry, I know I am rambling. I know we all have these questions at some point and we are forced to live with that burden. This is the only place where I write to vent my heart out. So called friends or relatives, don't even want to ask more. Maybe they are afraid of upsetting me or themselves, doesn't  matter. I really don't care. I lost my best friend, my only true friend. I have to learn to live with this black hole.  I am trying to swallow and move on with what people call "my life", but just writing here and knowing that people reading this "actually" get it, gives me a great sense of comfort and I am very grateful to all of you for listening. I apologize again for all the rambling.

Bless you all,
Dee

Hi Lainy,

Sorry I could not reply back in a while.  Mom did eventually fight through her infection and it looked like she was starting to get better. But then she started slipping quickly. She was put on the ventilator on April 10, 2013. She moved on to a better place on April 13, 2013.

I think I understand better what you meant by being strong. I don't think I ever was. I sometimes just feel mom's strength. It just feels like her helping me through.

Thank you for listening and for your comforting words. They have always been of great help.

Bless you,
Dee

Hi Desiree,

Sorry I haven't written in a while. My mom moved on to a better place on April 13, 2013.  I am still trying to understand what really happened.
She was diagnosed on Feb 1, 2013 when the doctors told me that we at least had a year.

I lived with my mom throughout this nightmare. She had been in the ICU since Feb 18, 2013. I was holding her hand the day she took her last breath. I gave her permission to go. On April 10, 2013 she was experiencing CO2 retention and the doctors told us that a ventilator was our only option. She was on the ventilator for the last 4 days. That was when I saw her cry for the first time. All I could pray for is that if God wanted to take her away please don't give her any more pain. I have been sobbing bitterly since the day she was diagnosed till April 12, 2013. But I wanted her to die with her dignity. More painful than loosing her would be to watch her suffer helplessly. Loosing her is my burden, I will bear my punishment. But she deserved her peace. On April 13, 2013 after she took her last breath, the nurses removed those numerous tubes hanging out of her and I think I saw a smile. I saw peace. I felt peace. Her smile gave me hope. Hope that my beautiful mom is not suffering any more.

I want to scream but I can't. I want to sob but I can't. I know what that loneliness feels like. I have wished countless times I could take her place. I could ease her pain. There is regret and guilt and will always be there. I lost that one person I loved the most. I know I am never going to be OK. I am trying to learn how to live with it.

I know its hard. She is my everything and she will always be. Sometimes I feel like she is holding me and I try to sleep. Sometimes I have to concentrate on some random noise to quiet the voices in my head. But I haven't been able to cry my heart out. I can't understand why. Maybe I haven't realized it yet. Maybe I had time to accept it. I don't know.

I know its tough, but at least our mothers are not in pain any more. They have given us so much love and so many memories that it isn't possible for them to die. To me death, is when life ceases to exist. Mom can never cease to exist. She is immortal. Her kindness is, her warmth is.  I try to think that she has her peace now. Sometimes that helps me breathe.

Love,
Dee

Dear Desiree,

Thank you very much for your kind words and I am sorry we share this sad connection. My mom has been bedridden for the past 9 week. She can walk, get up from the bed or even change sides and sleep. She has an infection which caused her platelets to drop and chemo had been suspended.Today, the doctors are again going to remove some bile collection. Apparently,her bilurubin levels are not that high but the stents that were put in earlier are probably working only partially. Her sodium/electrolyte levels have dropped so she has been drowsy and sleeps a lot. Sometimes, I think it is better that way since at least she is not in pain. Tomorrow, they are planning to do an ERCP again and clean the stents thoroughly and if needed put plastic stents on top of the metal stents. I am scared because they are calling it a high risk procedure since administering anesthesia when she is already drowsy would be difficult.

I am so very scared of hope right now because each time things start turning up, something goes so badly wrong. I know what you mean, Desiree, I am crying to while typing this to you and when I read your posts.

You are right, God was kind in a way he did not make your mom suffer. I know I can't control anything that happens but I just hope that if He wants to take her away,I just don't want her to be in pain.

I know your mom is looking down upon you from heaven and smiling. She will always be there in you, live through you and see the world from your eyes. I know her birthday will be hard but try to celebrate it like you always did, maybe it might be comforting to feel like she is always there.

I dropped everything and flew back home and have been by my mom's side since.I know what you mean by being by her side. She doesn't speak but whenever she opens her eyes, I try to whisper "I love you mom" and she sometimes replies. I know those are the moments I am going to cherish for the rest of my life.

I can't see her in pain, Desiree.It scares me out of my mind. I feel like running away and hiding in a corner of the planet that no one can find me ever. I can't imagine life without her. Sometimes, I think it will be ok, but when I think I won't see her again or hear her voice again, it scares me so much. I hope someday we can at least take her home. God bless you too Desiree and please do feel free to write to me too.

Bless you,
Dee

Thank you again, Lainy. Your words give me comfort. I read posts from a lot of people on these discussion boards, and I can imagine how difficult and strong they must be.

I haven't seen God but I know my parents especially my mom. Sometimes, the child inside me hopes that doctor will come and tell me she is ok. She will smile at me and tell me "Baby, lets go home !". She doesn't recognize me today, doesn't talk, doesn't smile. But I know I have to be strong.

I spoke to the doctor again today and he mentioned that they are waiting for a few more culture reports to adjust her antibiotics and if needed they might do an ERCP again, since it looks like the stents are not working. At least her platelet count looks ok and I hope they improve, so even if they have to do it they can. This illness just doesn't destroy your body, it kills your soul.

Thank you again Lainy for your kind words and my deepest respect to all those brave ones who are fighting this dreadful disease. I hope we can all find that much sought peace that we so desperately are looking for.

Thank you for replying, Lainy. I read these posts and I know there are many hearts in pain, maybe greater than mine. Sad as it is, I know I am not alone.
I have a loving family too, my dad, husband and brother are very supportive, but I don't know why, it still feels like they have come to terms with it. I don't know if I ever will.

Warriors like your husband and my mom are one of a kind. I know faith is supposed to stand strong no matter what, but there are so many things which keep playing in my head. Earlier, when my mom was in  pain she would at least, groan and talk about it, now I see her just quiver sometimes, I don't even know whether she is in pain or has to strength to scream. I try asking her and she just nods her head saying no, but I think she doesn't want us to hear our scream. She is trying to protect me even now like she always has. I think about facts - she exercised everyday, did yoga, ate healthy, did not smoke or drink. I don't get it. Yes, there could be a million other reasons to cause this illness but they all seem like freak accidents. We have never seen the inside of a hospital ever before in my life. Nothing makes sense any more. My brother keeps telling me, like you said, maybe God has a plan. He probably does, I don't know. I just feel betrayed. My husband keeps telling me, it could have been worse. I keep thinking it could have been better too. There are so many things I still have to learn from her, about being a mom, a wife, a woman.

I still have to learn more about this infection from the doctor more. They still need to run some tests on the fluid which looked like puss and bile that they extracted today. My only concern is, that the infection is probably hampering her platelet count which has suspended chemo. Chemo seems like being more secondary now probably even if she was in a state where she could at least resume life,  where we could go home, she could move around, talk, not be in as much pain, I could make some pace.

I work in Virginia, Lainy but my family is in India and my mom is being treated here in India as well. The oncologist gave her the first drug of her first round of chemo last week on Monday - Gemicite. She was doing ok till her platelet count started dropping later last week. She was due for her second drug - Oxyplatin this Monday, but like you said her counts were not upto the mark which is due to the infection so the doctors did not want to do it.

I am trying hard Lainy, to stay functional for her. I have good people at home and work, but suddenly my life has lost its meaning. We all think about tomorrow - maybe little things like doing groceries to bigger ones like buying a house. I have always prayed for my family. To be able to take care of them. My mom just did not give me birth she gave me a life. Everything I have today, is because of her. She has lived a very tough life, right from her childhood. We deserved happiness, she deserved peace and happiness, at least at this age. Thank you for contributing to these posts. I just spend some time reading and hard as it is, it is comforting to know, that its just not me.

Dear orlysud

I can understand every word you are saying. 8 weeks ago my mom was diagnosed with advanced stages of cholangiocarcinoma.

I live overseas too and I know how much I look forward to seeing my family every time I visit home. When the doctors told me she had cancer, I thought they were kidding. My mom is only 56 years old. All her she life she did 2 things - take care of her family and pray. She is the best and the most honest person I know. She had hyper-acidity and pain in her head when I visited home in January, 2013. We used to talk everyday for hours, no matter where I was. But since the latter half of December 2012 she couldn't speak to me too much. I knew she wanted to but she couldn't. I felt my gut saying something was wrong but I did not think it to be cancer.

We got her admitted into a hospital in Jan 2013, where she got her ERCP done and the metal stents helped bring down the obstructive jaundice. I stayed with her day and night, trying to take care of her to the best of my ability. At that time, she could still talk frequently and move about. The doctors told me that there was nothing that could be done, wished me luck and we were discharged after 2 weeks. We spent a week at home but then she started complaining of pain in her abdomen. We took her to a different hospital and they admitted her into the ICU because she had breathing difficulty. It has been more than a month now.

Every day is a nightmare one after the other. If we overcome the breathing problem, then her sodium levels drop and she goes into a drowsy spell. When we did overcome that, the oncologist gave her the first drug of her chemo and just early this week when she was due for the second drug, they found her platelet count has dropped and she has developed an infection where the stents were earlier put and today they removed some bile deposit as well.

I have been working nights to keep my job and taking care of her during the day. Sometimes, I feel like crying so hard till my heart finally stops. She is my best friend - my only true friend. We used to sing, dance, watch movies and yap a lot, today she stares into the blank space, looks at me with empty, hopeless eyes. Every day I hold her hand and murmur in my heart - "Mom you don't have permission to leave. I love you so much. I need you, I want you". But I can't see her like that anymore. A part of me dies everyday, each time I step into the hospital. Things look good momentarily and then suddenly all hell breaks loose.

I was never religious but I liked to think of myself as a spiritual person. I don't get it - Why us, Why her? If there is a God he does not have a heart. She taught me how to love God not fear him. Even today she prays - I know I am supposed to too. I can't. I am angry, I have a lot of questions but there are no answers. The doctors have withheld her chemo since this week and everyday the doctor steps into the room my heart just stops. I got married a year ago, on this very day that I am writing to you. Memories keep playing into my head too. I can't sleep I can't smile. I wake up screaming at nights sometimes. Sometimes, I wish I stopped breathing and could just go away with her. I know I am supposed to be strong for my family but I am human. I can imagine what you feel like. Everyday I think may be today is the day. Sometimes, I think the doctors are all nuts, they misdiagnosed everything and we will get to go home and will have her life back. My mom is one of the most health conscious people I know - this does not make sense. Hope keeps draining everyday and with my mom I keep letting go of God too. I am lost but I can't see my mom, my baby like that any more. Maybe I am selfish and am being punished for not taking care of her enough. But I know how you feel. I know how it feels like when your friends don't get it, they can't. Unless you have suffered through this, no one can. I wish I could give you a hug and cry, but from the bottom of my heart I can only say this, I understand. 

Love,
Dee

Hello Deepak/Jyoti,

About 2 weeks back, my mom has been diagnosed with stage 4 klatskins tumor
- cancer of the bile duct that has spread to her liver and the lungs.

The diagnosis was done in India and the doctors did an ERCP to place metal stents that controlled the jaundice and hyper acidity that she was suffering from. Doctors here are telling me that her disease is beyond the scope of surgery and chemotherapy would just make her life difficult.  I saw your post on CSN and it gave me some hope. I work in the US and was hoping to know if there were any specialized doctors/treatments you knew or anything at all I could do to save her.

She is currently admitted in Nanavati Hospital in Mumbai. 

We want to bring my mom to the US for the treatment but as she is in Hospital currently I am not sure if she can take the journey. At this point I also want to explore all the treatment options I can get in India. If you can please give me more details about the  treatment and the drugs that worked for you I can check for the same in India.

I would greatly appreciate any help on this.

God bless.

Regards,
Deepti