Coping with my dads diagnosis..

Kristin,

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. 

Take care,
Lauren

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!

Hi Kristin,

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,

Gavin

Hi Kristin,

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, -Pam

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 xoxo

Dear Kirsten. My heart is so sad for you but I am glad you found this place to help you find solace. I am a new inoperable cc patient with children 23, 19, and 14, so I can only imagine that I am on the other side of this coin. Nobody ever imagines that they will leave before their children are fully grown and fledged and middle-aged themselves! None of us knows how long we have and it is typical that the cancer is not diagnosed until it is very advanced. Many of us are the "picture of health" until the day we are diagnosed. It is wonderful that you are spending that good time with your dad. Make every day count, savor all the moments, and you will, I guarantee, find the strength to go on yourself and to be there for your dad. Grieving never ends, we never get over our loved ones, but you do learn that life will go on and you will find many happinesses ultimately in your future. Take it slowly and always consider a counselor or some help, even, some medication in the short term. It's a terrible, terrible blow. It's a truly raw deal and so very unfair. And it takes a while to get used to the idea, not to reject it as just some nightmare you can wake from. I wish you strength and comfort, and I hope your Dad is feeling up to a little fight, there! He is young and strong and that helps. He's probably more worried about you than you can imagine. I am more worried for my children than for me. I don't know if that is true for everyone, but if you can lean on each other and talk openly and share all your hopes and dreams and worries for the future that is such a wonderful thing. You have that gift of a little time here, small comfort that it may seem now. Good luck darling and keep us posted because we all care about you.

Dear Kristin,

My mom diagnosed with CCA is the exact same age and health as your dad, so I really understand what ur going through. She has tried everything now and has been given 6 months max to survive. But I will tell you this from experience, please do not give up on chemo or any other treatment. What may work u never knw and I am definite your dad will tolerate the chemo and subsequent treatments.

Life is too precious and please try everything, I am going to pray that your dad has a long and disease free life.

Hi-I hope everyone enjoyed their thanksgiving and got to spend time with family and loved ones.

Its been just over a month since I first posted to the site just after learning of my dads diagnosis. I just got home after spending three days with him...It was nice to spend that much uninterrupted time with him. The past month has been so hard. Ive been able to spend so much time with him but along with that comes so many tears and such a harsh realization. My dad hasnt started any chemo yet but goes back to the doctors on monday to check the growth of the tumor and make a decision.

Today was just the hardest day. A month ago, when I posted, I said how much I couldnt believe this... because he is "seemingly" healthy. Just over a mere 30 days have passed and he seems so sick now. Hes been having slight stomach pains here and there, but he was in pain on and off most of the day today. A severe stabbing pain in his lower right side of his stomach. It was so bad at one point that his girlfriend and I had to walk him over to his bed and help him in it. He looks pale and has lost about 15 lbs in the past month. Hes eating but has drastically changed his diet, so the weight loss may be from that but I dont really know. His energy levels are very low. He needs to take breaks from talking too much because it takes to much energy out of him and he was taking quick 5-10 minute naps on and off throughout the day. His breathing habits are different as well. Seems to "gurgle" while taking a deep breath every now and then.  The doctor has prescribed him oxycodon, ativan, and fentanyl patches. I guess the patches are there for him to use when he needs them. He started taking the ativan and oxycodon today. After taking them, a few hours later, between dozing in and out of naps, he wanted to take more.

He said he wasnt in pain at the moment, but wanted more anyways because he didnt want the pain to come back. He is not taking anymore then the dosage...at least while i was there. I just felt as though he took some of this medication today for the first time and all of a sudden hes saying he wants more and needs more. I couldnt help but wonder today that if now that he has this medication, is he taking it just for physical pain or as well as to just go to sleep and not feel emotional pain. Because when he took another oxy he said he wasnt in pain at the moment he just wanted to take another one, and within an hour he was sleeping.

I think we may call off this florida trip that we have planned for the 10th of december. After seeing him the way he was tonight im not sure its going to b the best idea to go through with it. When he was at his doctors this week he told him about the trip comming up in regards to it interfereing with any chemo treatments. The doctor has told him recently that he should start chemo soon if e decides he wants to do it. But when my dad went this week and told him about the trip he said, thats fine and that it may not be best for him to start right now anyways. Do you think that means that hes becoming sick so rapidly that the doctor may tell him the he shouldnt even start chemo? That hes too weak or sick?

I cant believe how in just over 30 days my dad went from so healthy looking and like nothing is wrong, to how he was today. I know this is a rapid cancer but is this what happens when its comming to an end? I called my grandmother tonight who lives in another state and is planning on comming for an extended period of time to be here with him. Because she is so far away, she doesnt see him to the extent that i do. I told her that She should think about comming here sooner rather then later. I want him to be able to spend time with her and Im worried this is gonna happen so fast. im scared. I guess Illl know more after his apt on monday.

Thanks to all of you amazing people for all of your help and support. Reading your posts, is my therapy. One of the few things that helps me get through..you're all so wonderful.

Kristin x0x0

Dear Kristin, Willow is right, it is very hard for us to know what is happening to your Dad as it does seem that no 2 people are alike in this disease. Somehow I don't think Dad is hiding his emotions by sleeping, the pain sounds real. If the pain stays under control for today and tomorrow you are 2 days away from the ONC, however if you see his condition worsening today I would take him right to the ER. You could also put in a call to the ONC and tell him what is happening. I would especially tell him about the pain and the gurgling. I would not worry right now about his eating, instead you might want to try a nutritional drink. Teddy loved the Carnation Instant Breakfast in vanilla and I would blend in a banana. It can take the place of a full meal and Dad will get all the nutrients he needs. Best of luck Monday and please let us know what happens.

Hi Kristin, I join everyone else in how sorry I am about what you and your family are going through.  I know when my son was first diagnosed his breathing was particularly worrisome to me also.  It turned out to be painful for his lung to inflate and push on his swollen liver.  This may be the same for your Dad.  After a couple of chemos and with the right pain management that did go away.  It would be nice if someone had a list of what to expect but no one does.  Best of wishes to you, your Father and Family.

Kristin,

I can relate to how you feel. My dad was diagnosed on July and by August 2012 his physical changed drastically. With a bile drain tube coming from his right stomach, and one of the doctor said he was going to die in 6-9 months, I was angry with everything including God. My dad is an active person, and it's a frustration for you to see him helpless. My advise for you, don't listen to number of years on his live, if your dad still feels he can fight this disease like my dad, believe there is always a door open for you. It gives you hope when you're down as it's to me. Your dad will be in my pray!

Kristin, sorry to hear your story. It made me cried. My dad also has cc, just found out a month ago. He's old and weak while obstruction been going on for a month, he seems weaker. He had one side drained last Friday, seem much better, but today doctor said even it's improving, but he doesn't think it's improving fast enough it's an indication of liver function is not going to be good enough for treatment. I don't know what to say and I don't quite believe it.

One thing I've learned is, if your dad decided to have some treatments, go for consultation asap. May or may not start soon, but if he wants to do something, start early when he's stronger. Starts later he maybe weaker, would have less options.

You are in my prayers.... take care.