June 20, 2014 at 12:57 am #83090kvollandSpectator
Try not to beat yourself up over it. I know it’s hard but with this disease there is little you can do to change it’s course. Maybe if the doctor had recognized your concerns and had treated it they might have bought her more time. But I have a firm belief that when it is our time, it is our time and there is very little we can do to change that. I promise there will come a time when you will go for an hour, then a couple hours then a day without feeling that intense grief. You will be able to pull those good memories out and cherish them.
I still second guess my decision about my dad. He had a heart attack and I rushed to the ER. When I go there I had to make the decision on if I wanted them to keep trying or to stop. He had been down for 45 minutes at that point. I know it my brain I did the right thing but my heart often questions that.
I would suggest that maybe you see a grief counselor just to help you through this time. I did after my father passed. I was very angry for awhile that my dad was gone and I was stuck with my mom (there’s a long story there) who is half crazy. It was so unfair.
Hang in there and keep putting one foot in front of the other.
Hugs, KrisVJune 19, 2014 at 6:40 pm #83089
You are a good family man and a great advocate for your wife.
I know how hard it is to wake up every morning (that is if we ever get to sleep) and have the strength to put a foot in front of the other without giving up.
I hope Lynn’s new treatment will MELT DOWN all her cancer so you can both go back to your normal life as soon as possible.
EmadJune 19, 2014 at 2:03 am #83088scheitrumcSpectator
You have experienced the worst pain of this horrible disease. And yet you came back to this site to share your feelings as well as to offer console to others.
That is very special.
CarlJune 18, 2014 at 8:07 pm #83087
My dear kris, I hope is Mark is feeling better by the day.
You are a wonderful woman and have one of the best caregiver attitude I have heard of. I know how hard it is to be able to wake up everyday and be able to take care of a family and at the same time deal with fear of what the day will bring.
I am so scared of the future. I have been scared, like Lou, that a time will come and I wont remember my Mom anymore.
We left this morning my parents house ( I took My Dad with me) trying to do some productive work and keep myself from thinking. I have neglected my business for almost 2 years since my brother in law got sick. That took a big toll on the business and now it is barely hanging there.
Do you believe me if I tell you that I couldn’t keep myself from thinking of my Mom for 5 minutes in a row.
You lost your dad knowing that you were not able to do anything to save his life. I am struggling the other way around, I don’t know if my Mother died because I couldn’t help her or because the doctor did not want to put the effort since she had a terminal cancer.
My Mother had a UTI that turned to sepsis even though I was telling the nurse at the oncology center, where we went to get her blood tests and fluids every other day, that her WBC count is too high . So she would go make a phone call and come back saying that the doctor said it was fine.
Can someone tell me for God’s , HOW a 14 to 17 WBC FOR FEW DAYS AFTER CHEMO is considered to BE FINe by ANY DOCTOR?
I am very UPSET and fell like I BETRAYED MY MOTHER.
EmadJune 18, 2014 at 1:55 pm #83086
Thank you my dears.
Dear Darla, I truly understand your pain.There is a reason for my user name and the title of this post: “SEEK” and “Angels”
Our small family nightmares started at the end of 2012 .My brother in law(our oldest and only sister’s husband) was diagnosed with reoccurrence of his cancer, he passed on April 23rd of 2013.
That was the first time I had to deal with death within the family.
It hit me so bad, I was very close to him, he was a brother, a mentor. He taught me everything I know since I came to the US 14 years ago at the age of 26.
When I read you posts, Marion’s posts or any other lady that lost a husband, it brings all the memories back.
My lovely Julie,
In my first post, I started by calling all of you on this board as HUMANS
Cancer is a beast, it comes from nowhere and like a tornado, it wipes everything’s in its path. It effects all our lives,patient and family members. It strips us from our ego, it takes our dreams away ,We feel naked and vulnerable, weak and helpless. We pray for a miracle, we get closer to each others, we go back to God even if we forgot about Him when our lives seemed perfect.
I feel your worries and your emotions, but please try to always be positive and think of all the positives. I am going to tell you something that might sounds harsh and selfish( can’t hold my tears as I type this) ,and please understand that it kills me everyday to think that way. I used to be envious when i read about someone getting better or a success story in the good news section. I would ask myself why not my mom.
Please be strong and take all the negative thoughts off your mind, not just for Julie, but also for your only Son and grandson.
I used to tell my wife that we can always have a different girlfriend,boyfriend,wife or a husband but you can never replace our moms and dads.
Julie, you are one of the very little blessed ones with this cancer, keep rising and shining, I won’t say fighting or winning because that is not a fight, and I refuse to say that our loved ones who passed from cancer have lost their battles.
Gavin, you are beyond compassionate. You invest a lot of your time researching and and posting studies to help others. All my respect to you and everyone else that is doing the same, it takes a lot from someone who lost a loved one to do what you guys are doing to help others.Most of us cannot deal with it and I can totally understand them.
Just so you know, I have been staying with my dad for almost the last 8 months (since my Mom got sick). It has been so hard on him to be without his wife and best friend of almost 50years.
You remind a lot of myself and of my life back in Lebanon. Ilias, Elias or Elie is one of the most popular name in Lebanon, in reference to Saint Elie.
It was always hard for me to read your posts, I feel very connected to you.
We are close in age, I just turned 41( worst birthday ever), my Mom wasn’t fluent in English but she was very independent and had a job till she retired last June, ironically. Our Mothers were about the same age.A dear friend told me that I should be grateful that my Mom did not pass all the sudden from a car accident and that I should cherish the time that I had to spend with her when she was sick and how much love was put in it. We left our jobs( me and my sister)to be with her 24 hours a day since she was admitted on the 12th of October 2013 due to a severe DVT in her leg . My brother who is the middle child came to visit her on the day she did her first chemo on January 7th 2014, he lives in France. I will never forget that first day of chemo, she was in the hospital, my brother came straight from the airport to the hospital at 9:30 pm. She was so worried about him seeing her , she started asking again and again few days earlier about when and what time he was coming and had an anxiety about it for several days before.
I am trying my best to try to remember the good days but I am not able to escape the bad one, either one hurts a lot.
God bless you, as my Mom use to say.
EmadJune 18, 2014 at 7:31 am #83078iliasMember
Welcome to this wonderful site. Your feelings and emotions within your words are just amazing. I don’t have much to add, but I am so sorry for your loss. I too lost my wonderful mother to this nasty disease and I feel angry. I feel so angry that I can no longer cry for her loss. In the beginning I felt her presence, but that is slowly fading away and I am frightened that she is leaving me forever.
There are amazing people on this forum that have so much wisdom and knowledge that they lovingly share with us. Unfortunately, far beyond the seas where I reside, there is very little information available and the treatments are no where near as advanced as what they are where you are from.
Once again, welcome and sorry you had to find us.
Take Care & I look forward to your posts
IliasJune 18, 2014 at 5:27 am #83080gavinModerator
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your mum as well. I lost my dad to CC in 2009 and I know how you feel. I understand how you feel about everything and please do not worry about sounding angry or moody, I would say that that is normal. I also understand how it was hard for you to join the site too. As I said, I am glad that you have joined as I think that talking about things will help you with everything. Please feel free to join in as little or as much as you want to with things, we know how you feel and we are here for you.
My best wishes to you,
GavinJune 18, 2014 at 5:03 am #83082iowagirlMember
I want to share with you all something my daughter-in-law asked me when I was in the hospital. “Will things ever go back to the way they were?”
I know she knew the answer….but just as I grieve over the loss of my old “normal”, my family is grieving as well. We’ve had our share of medical problems, some very scary and some really horrible, but nothing seemed to throw our family for a loop quite the way my ICC diagnosis and treatments have done. There will be the scans, and more scans, each with the anxiety of the unkonwn answers it will give. Is the cancer back? I had no symptoms , even blood tests were normal, that I had the cancer, so how will I know it’s coming back? I won’t….at least not without those scans. Each time, the fear is going to return….and that is my new normal. But, this cancer will always now be hanging over my head.
So, Will things ever go bacl to the way they were? No, my dear, sweet, DIL, they won’t. ALL of oir lives are forever altered by this cancer diagnosis. There will come a time when I hope we can call this cured….or at least we don’t have to preface every planned family event with, “Depending on how I feel. from the chemo.” Right now, I”m just “getting through what I have to do, ” but someday, I will again feel better, let loose and plan for the future again. That’s MY plan. It may not be cancer’s plan…..but for now….THAT is my plan.June 18, 2014 at 4:07 am #83085kvollandSpectator
Welcome to the family. Sorry you had to join us and so sorry for the loss of your mother. I understand how you feel. I lost my father very suddenly several years ago and while I know there was nothing I could do to prevent it, I still grieve that loss. I won’t tell you it goes away but it does ease and become less acute. Keep thinking those good memories about her and remember the good times.
Also remember you don’t have to always be positive and this is a great place to let go when you need to. We all can be moody or angry at times. This disease would do it to the best of people.
KrisVJune 18, 2014 at 3:22 am #83081darlaSpectator
I too want to welcome you to the board. I am glad you have decided to join us but sorry for the loss of your mom. I have and still do feel a lot of the emotions you describe after losing my husband to this disease. I try to think positively that he is no longer suffering or in pain and is in a better place. He will be with me forever in my heart and all the wonderful memories we shared and I’m hoping you will be able to do the same. In time you will begin to heal and maybe then you will be open to the signs that she is still near you.
Take care dear Emad and know that we are all hear to help and support you in any way that we can.
DarlaJune 18, 2014 at 12:43 am #83084
Hello again to all the wonderful people on this board.
Dear Lainy, i was always impressed by your warm personality and your ability to jump in either to welcome a new member or to comfort another even at times where you needed to be comforted yourself.(that is what happens when you marry an Italian, I guess Teddy’s Mediterranean Personality is contagious)
I do believe in God and eternal life. I believe in Jesus and the Holly Spirit, in Saints and miracles. BUT for now I AM MAD at all of them.( i know you can keep it a secret)
So for now allow me to have some time to heal, and i am sure when i am ready i will ask you to email the list of signs that our loved ones are around.
As for you my lovely Julie, I was in tears reading your reply to my post. I know that my pain will never stop, i might act or look normal to others after a while but my heart will forever bleed.
i am passionate about your long posts and the way you vent to all of us on this board. Keep it coming, don’t ever feel like you are complaining, whining or not making sense.We are here to listen to you and others. This board is for anyone that needs some attentive ears and comforting words to lift him up.
By the way, i want you to promise me that sometime after you are all done with the chemo and life is back to normal, you are going to let me have taste of the delicious cake that your are going to bake for your grandson. For all of you on here that don’t know:” Julie Ann’s Cakes ” are the best…
Marion oh MARION: Our Advocacy Director and” Unsere Deutsch Engel”… did i say it right?
you just hit it on the nail: life is not perfect, unfair and unpredictable. We never know when our whole word will turn upside down.
I never feared anything in my life as long as my family and loved ones were in good health and safe. AND THEN… the earthquake hit our family.
I am not sure if i will ever get over the impact of my losses, My Life has changed forever.
Thank you all for welcoming me to your board
EmadJune 17, 2014 at 10:29 pm #83083marionsModerator
Emad….Thought we don’t like the circumstances of your joining this site it has however grown by one additional, amazing person.
The loss of a parent is immense whatever ones age. A society that places high value on being positive often does not address facing temporary or long-term sadness which does not allow us to be in a positive mood. And, as we know, moods can have a life of their own.
The pitfall of positive thinking is our believing that life is perfect. In my opinion, it simply is not so. Everyone’s existence is surrounded by frustration, disappointment, challenges and more so by failed expectations.
The impact of your mother’s loss will lessen with time because; simply you have to go on and life goes on as well. And, we know that those that left us would want us to do just that. Nothing is easy in this process they call grieving, but it is something we have to adapt to at our own pace, based on our backgrounds, the support we receive and our willingness to accept that life has forever changed for us.
Continue to talk, dear Emad. It helps to get it out and to have loving, caring, and understanding people by your side.
MarionJune 17, 2014 at 9:24 pm #83079iowagirlMember
Emad, I’m a CC patient /survivor, as you know, but what you have voiced is what I felt after my dad passed away suddenly from large cell lymphoma in 1984. I was mad…..I was in tears…..why did this happen…and we didn’t have time to do anything before someone figured out what was wrong. He was in the hospital one week in a small county hospital and then air ambulanced to Mayo where they did a biopsy and found the cancer diagnosis…and he died just a couple days later. His kidneys shut down before they could attempt chemo, which probably would have saved his life. I still have a lot of anger toward a family member who delayed his transfer to Mayo and to local doctors who failed to recognize that they were dealing with something beyond their expertise. According to the medical books I read at the time, he had one of several possibie diagnosises and all of them were life threatning and something that the local hospital couldn’t handle, esp considering his condition. The cancer was bad enough, but to this day, the lack of treatment he received…or rather, right treatment, is something that still angers me. Since dad’s cancer was probably the result of exposure to farm chemicals, like DDT, I have wondered over the years, if I would also be a victim of a cancer like dad. I played around the areas where he sprayed and spent a lot of hours with my dad. I don’t know if the CC I have has anything to do with that or not….my guess is not, but It’s in the back of my mind always. I guess you opened up a hole for me today……things I hadn’t thought about for a long time. I know you miss your mom…..I miss my dad….neither of them should have died when they did….there just should have been more that could have been done. It’s interesting that you refer to your mom as your guardian angel…..because that is also how I see my dad as well.June 17, 2014 at 8:47 pm #83077lainySpectator
Emad, I am so sorry about your Mom and I know how you feel and you know what I am going to say! Are you a believer in the beyond? If so you will know your Mom is always around you and by believing sure has helped me to go on happily after my Teddy passed. I have a log of 102 visits in 3 1/2 years and when I feel lonely I just read them and know he is here. Your Mom must be so proud to have raised such a loving son. Take your time in grieving as there are no rules to that and grief is like a river where you can’t stop the flow. IF you are a believer I would be happy to send you a list of what to look for to know Mom is still there. I am so glad you stopped lurking and decided to join this awesome family. We are also here to listen to you rant and rave and perhaps lend some valuable advise. I already LOVE the way you write. We are here for YOU!June 17, 2014 at 7:12 pm #10175
Hello to all the amazing Humans on this discussion board.
My name Is Emad and i live in SW Florida.I have been lurking on this website since mid January but i did not register till few days ago(after several failed attempts).
I lost my Mom, My Guardian Angel, on March 5th 2014 due to an infection that turned into sepsis. She was diagnosed with adenocarcinoma on January 2nd of this year.At first we thought it was a gallbladder cancer.Around mid January as the GI was doing his quick round at the hospital, my sister asked him about the name of the cancer, this was when i heard the word cholangiocarcinoma for the first time.Since then, i have been devouring every post and information on the discussion board and on the Internet, spent hundreds of hours trying to find answers and hope. Like all of us on this board, it becomes very emotional at times. It has been over 3 months since my Mom passed and i am still in denial, i still look for treatments like if she is still with us.
It was very hard for me to join this website. I can assure you that i know everyone on this board(moderators, patients, caregivers, family members, friends of a patients..), by name, experiences, treatments done etc… to the point that i can tell you how each one of you is going to respond to my introduction post.
Please be understanding if sometimes i will sound angry or moody. Just remember, i have over 5 months worth of emotions, questions and ideas i need to get out.
PS: I want to say a special thank you to Liza Craine, she listened to me rambling for over an hour without once her trying to cut me short or making me feel as a stranger(she doesn’t know me) till i realized that i had to let her go so she can enjoy her evening with her family
Lainy, please take the lead
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