Coping with my dads diagnosis..
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My husband at age 66 was diagnosed with state 4 CC. He lasted 9 months with chemo, radio embolization, and chemo embolization. He had to stop chemo because it was damaging his kidneys. I thought he would have at least 2 years with all this treatment. I sometimes wonder if he would have had a better quality of life without all of this. The treatments made him really sick.
I don’t know what to advise, but I hope this story might help your dad decide. What ever he decides, please get hospice. I think they can help stabilize him with pain etc.
Take each day at a time, and spend as much quality time with your dad as you can. Each day is precious at this time.
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.
Wow Kristin, as I listened to your story, I feel like I was reading mine. I too am new to this site, & am here to get support & understand what happened to my Dad in such a short time. I hope & pray you get all answers you want & need. keep your head up & try be STRONG for your DAD. Remember no matter what DRs say keep fighting looking for results & most of all make everyday count. Enjoy, have fun laugh cry (if u need too) with your dad. U R in my prayers.
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!
Hi Kristin,
I am so sorry you are all going through this difficult time. I can’t give you much advice on treatment options as my Dad was only able to receive palliative chemo., however, I can give some advice from a caregiver’s perspective.
Many have said that there is no clear path for this illness, what works for one person, may not for another. Some have miraculously beaten the odds. Keep in mind that each one of us is different and responds differently to treatments, so if your dad is not successful with a protocol that has worked for someone else, try not to get discouraged. There are options that he can try and he has not exhausted all of them. I firmly believe where there is breath, there is hope, so please hang in there.
As for being strong- this is a tough one- many told me (including the doctor) that I had to be strong for my Dad; an impossibility for someone losing her best friend. So, when I needed to, I would rage. I had a friend I’d call and many times I’d scream into the phone, so angry at the injustice of it all. When I could, I would cry my eyes out because I ached for my Dad’s pain. I was afraid this emotion would have a discouraging effect on him, so my one hour tearful commute always ended one block before my parent’s house where I’d Visene my eyes, use a nasal spray and would plaster foundation on my face to disguise that I’d been crying. For the most part I faked my strength in front of my Dad, but there were times of tenderness when we both cried and those are beautiful memories that I cherish.
Kristin, treasure every moment! When my Dad wasn’t looking I’d be staring at him, memorizing the lines on his face, I’d pay special attention to the sound of his voice, I’d try to make him laugh, I’d try to steal more embraces because I was afraid that those moments would be coming to an end. Every moment you have with your father is precious, whether it is a moment of happiness, or a moment of regret at the situation. It is a great blessing and honour for a child to be able to give back to their parent and pain is the price we pay for love.
Try not to second guess yourselves, make sure you can get as much information as possible and use this site often as there are many wonderfully wise and caring folks on here who support for no other reason than they really care. I found this site four months after my Dad passed away and I wish I had found it sooner. Come here as often as you like and say what you need to, there will always be a virtual embrace waiting for you.
One last thing, and I’m not suggesting this because I think your father’s situation is dire, but you might want to consider as part of your journalling, a book on father/ daughter conversations. It gives some really good examples of questions that turn into discussions that can be healing for many different reasons. The book is “Conversations with My Father: A Keepsake Journal for Celebrating a Lifetime of Stories (AARP)” and can be found though Amazon.
I’ll end by telling you that your father, you and your family are in my thoughts and prayers. These situations are in God’s hands and he won’t drop us.
God Bless,
Missing UHi 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 am so sorry to hear of the latest development, but please don’t worry about making a call to the physician or hesitate from taking your Dad to the ER. The symptoms you are describing should be evaluated by a physician.
Hugs,
MarionDear 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.
Just read your post and really, truly feel for you. I can relate too, having so many questions and not knowing what to expect. My sister was just diag in early Aug, just before she turned 50, is married and has a young son. Like you, I’m really having a Hard time wrapping my head around this being REAL and almost dsily read discussions on this blog to help get a sense of control where there really is none. It does help though, tons of knowledgable people with compassion and patience. im almost as new to this as you are but the one thing I’ve gathered is that no two people follow the same path with CC though many share similar problems along the road. Frustrating since we want answers! Anyhow, so glad you could be with your Dad for a few days. His symptoms may be something tvat csn be alleviated by a procedure (like if there is a blockage of colon or bile duct. maybe he should get to a dr sooner since this pain is sudden and severe.
Thank goodness he has you, his girlfriend there and his Mom coming soon. WillowHi-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
Hi Kristin,
Sounds like we are both at the same point with our fathers:( I too feel like the past 2 months have been a bad dream and I keep waiting for someone to wake me from the nightmare! So glad that you too have found this supportive safe haven. I have learned so much already and it has helped me to be able to understand my mothers daily updates. I live about 7 hours from my parents (which really sucks at times like this), but not a day goes by where we don’t communicate!
My dad too has the chemo or no chemo decision to make. Please keep us posted on what your dad decides.
My heart goes out to you as I can totally relate to what you are feeling! Hang in there and be sure to take care of yourself too!
Please do keep in touch! Big hugs to our dads!!!
Rena
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.
Kristin,
Thank you for sharing so openly with all of us. I have two sons, Jake is 21 and Noah is 15; I have CC and I am 48. My world was turned upside down like everyone with this diagnosis. I worry the most about my sons and my husband, it makes me so sad to think of not being here for them. I think being the patient is actually easier than watching someone you love go through cancer. I thought cancer was a physical disease till I was diagnosed then I realized that it is so psychological too. I also have changed my diet and I do feel better. There are so many on this site(including me) that have been given a poor prognosis and we are here and fighting. Don’t give up hope.
Praying for you,
LisaDear 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.
Dearest Kristin, to Chemo or not to Chemo is one of the biggest decisions to make. While a good diet can make some feel good, it will not get rid of the CC. A good book about diet and Cancer is the Anti Cancer Book. While no ONC can really know how much time anyone has they can give an educated guess albiet just a guess. So, your Dad might want to ask the ONC how much time do you think I would have with chemo versus without chemo. This helped my Teddy to make his decision. For you, Kristin, I would go see your GP, tell him/her what is going on and they can prescribe a mild RX to help get you through this. We are all here for you and sending good thoughts, best wishes nd lots of love your way. You must take care of yourself and BE STRONG!
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