November 9, 2012 at 4:49 am #66339kristin97292Participant
Thank you to everyone who took the time to read my post and reply. I cant even tell you how much reading your responses changed something inside me and helped me to know that I am not alone. I cant believe how many people are here for me and care so much. It was finding this site and reading your responses that changed my attitude from having no hope at all, to believing that my dad can fight this and I now have hope that maybe there is a way.
Since the diagnosis my dad has completely changed his diet. For 2 weeks He has been on an all organic diet…including alot of ginger root and habanero peppers. ( I have been very negative on this and annoyed by his persistance and emphasis on how much he believes this whole diet thing will help him. untill now) He says in the past 2 weeks he feels a complete change in how he feels and is going to continue this diet. If that makes him happy and he feels good, then I am happy too. After reading on this site I see how much a proper diet and certain foods can impact how people feel.
He still hasn’t decided if he wants to start chemo yet or not. He told the doctor that he wants to continue his diet for a couple more weeks and get another scan. At that point he will decide if he wants to start chemo. The thought of chemo scares me as I dont know what to expect for him. This is all so new and confusing. I want him to enjoy his time here and I imagine chemo making him to sick to do so. What if he does chemo and it makes him to sick to enjoy his time here and it doesnt do anything for him? but what if it does? At first I thought, if they say surgery is not an option and nothing can be done, i don’t like the thought of him going through chemo. But after reading all of the amazing success stories on here I feel like miracles happen all the time and he can conquor this! I will support his decision with whatever he choses to do.
I spent the whole day with my dad today:) We talked about things we needed to talk about and cried…but we did laugh and smile today too. I was embaressed when he woke up to me staring at him while he was taking a little nap, haha. I have to get used to the up and downs of one moment to the next with all of this.
Tonight my younger sister and I went through 2 boxes of pictures from throughout our entire lives. I will be spending time with him tomorrow as well and cant wait to show him these pictures that I know he hasnt seen in a long time.
I cant thank you all enough for being here for me. I feel so blessed to have found you because untill having met all of you I had no hope, no faith, nothing. After a nonstop breakdown from almost noon to 4 AM yesterday, I almost checked into a hospital because I didnt know what else to do and I just wanted a break from ‘feeling’.. I certainly dont feel like everything is alright, and I am checking into speaking to a counselor, but finding all of you amazing and caring people has changed my world. In the matter of just a day, my attitude has changed and you’ve given me so much hope. Thank you.
Kristin xoxoNovember 8, 2012 at 6:10 pm #66338ashleycParticipant
I like you was young and only 25 at the time my mother was diagnosed 2 years with stage IV CC at the age of 46. At the time she was given a year to live max…something you do not want to hear but I understand where you come from wanting to know how much time you have to enjoy and soak up every last moment and memory. As many of said, there are several on this website who have survived this awful disease and taken to treatment very well. Chemo effects everyone differently. Please please know you are NOT alone through this journey. This website has so many amazing and wonderful people that you’ve never met, yet you feel you can tell them anything. Their words of encouragement and advice helped me feel comfort during many times of need. Like some of them said, writing in a journal can help. I know it did me. It allowed me to “talk” to someone, mostly my mother without breaking down in front of her when I needed to be strong. I still continue to write in and “talk” to her a year after her passing. I’ll be praying the good Lord gives you the strength and comfort you need during this difficult time.
AshNovember 8, 2012 at 3:27 am #66337pamelaParticipant
I am really sorry to hear about your Dad. I understand how you are feeling and it is the worst. My 26 year old daughter has this cancer. Our whole family was absolutely devastated when she was diagnosed Aug. 2011. Your life changes in an instant and you want so desperately for it to go back to how it used to be. You kind of walk around in shock and wonder why the rest of the world keeps going on as usual.
I can tell you that once a plan of attack took place and Lauren started chemo, we felt better. We never asked how much time she had left. We don’t know what stage she is because she didn’t want to know. Her oncologist just said she had advanced cancer. Nobody knows for certain how much time a person has left.
I went through a difficult time after Lauren had a scan that wasn’t very good and I went to see my doctor who is wonderful. He put me on antidepressants and I feel so much better. It took awhile to find the right medication for me, but it was worth it. I am not promoting taking medication. I am stating that it helped me.
Lauren became angry after about a year of dealing with all this. She has spoken to a social worker that told her that she was perfectly normal with her feelings. She is doing so much better with just talking to this person. My daughter is so amazing. She has handled all of this with such strength and grace. She never complains and tries to be so independent and strong.
I think it is very important to keep a positive attitude, never give up hope, and live each day to the fullest.
My heart goes out to you and your family. Don’t ever apologize for expressing your feelings. We are all in this together and are here to help. Please keep us updated on your Dad.
Love, -PamNovember 8, 2012 at 3:09 am #66336darlaParticipant
I am so glad you have come to find this site. You will find there is so much support, information and love on here. Although all experiences differ we are all dealing with CC in one way or another. I lost my husband to CC at the age of 62. I can’t speak for my boys, but do know that it has affected them greatly, in different ways. I am sure you will be hearing from others who are dealing with the loss of a parent shortly. Our Dr. Giles is also a good place to go for answers and help. Take care and keep in touch.
Love & Hugs,
DarlaNovember 7, 2012 at 9:50 pm #66335gavinModerator
Welcome to the site. Although I am so very very sorry that you had to find us all here. I hear the pain in your post and I can so relate to that as I went through exactly the same after my dad was diagnosed with this cancer. I came here after hearing the news like you have done and everyone helped me so much, and I know that everyone will help you as well.
Your post is not negative at all, please do not think that and you go ahead and post what you want to. No apologies are ever needed. It is normal for you to feel as you do right now and for so many of us, getting news like this about our loved ones comes as a complete shock. With my dad, he was otherwise healthy like your dad albeit 7 years older but healthy none the less. His first symptom was the jaundice in the eys and the skin, admitted to hospital, multiple tests over a few weeks then similar news to your dad in that his CC was not operable.
You have done the right thing in coming here and seeking help and support, and as I said before, you will get tons of that from us all. You will get through this and you have all of us in your corner fighting with you. I know that right now your head is spinning with having to deal with all of this, we have been there too. But please, do not give up hope. Do not stop fighting and do not think that you are alone here. We are here for you and will help you as much as we can. Keep coming here and let us know how things go for you and your dad.
My best wishes to you and your dad,
GavinNovember 7, 2012 at 9:35 pm #66334RandiParticipant
I am so so sorry to hear about your father. I was 54 when i was diagnosed with CC and consider my self one of the lucky ones that had it caught at an early stage. My main fears and sadness about having this disease centered around my 2 daughters. How could I leave them without a mother. I know they are strong, independent woman, but it seemed like such a terrible thing to do to them. I am sure your father would love to spend time with you and talk about happy times and see that you can cry and laugh with him. I know that means a lot to me with my daughters. We are still making memories and that doesn’t stop with a dire diagnosis.
I am so sorry that you are going through this and I agree with Marion that it can be helpful to both journal and to seek out professional help when you need it. I brought one of my daughters to counseling with me so we could talk about both of our fears together.
Take care and I am sure others will follow with posts to welcome you to the site that no one wants to have to be part of but where there is so much love and caring.
-Randi-November 7, 2012 at 9:30 pm #66333lainyParticipant
Dear Kristin, welcome to our extraordinary family but sorry you had to join us. We all understand how you feel as in the beginning you think you were hit in the stomach with a baseball bat but I promise you once a decision is made to have treatment your fright will turn to fight. It sounds like your Dad has already developed a positive and good attitude and you are going to have to be very, very strong. We do have members who were given months and are still on this board after years. We don’t believe in time lines. Everyone reacts different to CC and the best is to have a good ONC who has dealt with other than a few CC patients. If surgery is not an option you do still have chemo and if that can bring the tumor down in size who knows what may follow. Right now you find ‘talking’ about this is upsetting but I feel talking is always the best way to deal with this situation. It allows Dad to take charge of his life and it allows the family to take care of their concerns. You are not alone, we are all here for you. You never need to apologize for anything you post here, of course you are upset who wouldn’t be. We have Dr. Giles at the top of the Home page and you cn send questions to him about what to do to get through. I know for sure that you will be hearing from our members with some good suggestions for you. Please do keep us updated on your Dad, we really care!November 7, 2012 at 9:24 pm #66332marionsModerator
Kristin…My heart goes out to you and your family. I can’t think of a more difficult time then knowing that our loved one will leave us. How do we cope with our fear, disbelief, anger, depression and denial and the pain of knowing what is to come? There is no easy answer, dear Kristin however; you can be assured that there will be many moments of valuable time to spend together. And this so precious time, dear Kristin, eases the pain, soothes the heart, and allows for moments cherished forever.
Our Dr. Giles spoke of celebrating the relationship, to go through pictures, focus on the love and respect we have for each other, and not to be afraid of shedding tears during this process. There is not specific protocol rather, at times you may just want to listen or sit in silence together and cherish the connection.
You may also want to speak with a bereavement counselor who will help you understand your feelings and who understands the magnitude of loss you already are experiencing.
Writing in a journal can be therapeutic too, as it can help release pent-up grief and stress. Writing will allow you to jot down whatever is on your mind – things you may be uncomfortable in speaking out loudly.
Most of all know that it is time to reach out to those you love and trust.
My heart is with you,
MarionNovember 7, 2012 at 8:49 pm #66331laurkcpParticipant
I know exactly how you feel. My mom (79) was diagnosed in June. Although she is older than your dad, she was the most vibrant, active 79 year old. The diagnosis is devastating and sometimes it is hard to accept. My mom is also not a candidate for surgery. Yes, chemo can prolong life and for someone who is a planner, this has been an eye opening experience to take things day by day and enjoy every moment.
I have gotten a lot from this forum. There are many people who are surviving way longer than anyone expected. Unfortunately, there are many who fight real hard and succumb to this awful disease. Honestly, I believe it is in God’s hands. As long as your dad wants to fight, you need to support him.
FOr my mom, the chemo thus far has made her feel better. Her jaundice is gone, her pain is gone and her appetite is back. The chemo makes her very tired, but it is a small price to pay.
It will take a while for you to come to terms with this change. I cannot say that I am always so positive. I still feel cheated, as many on this board do. But, if anything, I have hope. I am thankful for each milestone.
There are many on this board who will say that we do not come with an expiration date stamped on our foot. This has been my new motto.
LaurenNovember 7, 2012 at 6:42 pm #7576kristin97292Participant
Hi my name is Kristin, im 23 years old. My dad, 57, has CC.
On Oct.16th my dad was diagnosed with adenocarcinoma. Primary was unknown. He went for more testing and a second opinion and the primary location was found to be in the bile ducts. The mass on his liver is 11×7 cm. He is in stage 4.Yesterday we went to the Dana Farber Institute in Boston for a 3rd opinion and was told that surgery would not be an option.
I asked the doctor what the prognosis and range of life expectancy he would have at this point. After he told us, Im not even sure if I should have asked the question. My dad has always been an otherwise healthy man. He’s so handsome and looks so young and is walking around normal so Im having a hard time understanding how this is happening and how he has been given such a short time frame.
The doctor told him his next step is to decided if he want to start chemo as a method of prolonging life or not.
Im here because I don’t know how to cope with this and I dont know where else to turn. I am now talking to my dad and family about things I cant even believe we have to talk about. I dont want to look at my alive and healthy dad and plan and prepare for what i cannot believe is happening. everyone on this site seems so positive, so Im very sorry for such a negative post. I just feel like I am not going to be able to get through this. I need help, All I do is think about him and cry and pray that this isnt real. It cant be.
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