My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin
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Missing U,
Thank you so much for all your kind words and thoughts. I am trying very hard to show him support and love. It is so difficult to do, for he sleeps most of the day. I know that today is going to be hard on My Mother and I, as we take him for the procedure, and then have to be told the findings. I feel like he is being diagnosed all over again, just like he was 2 weeks ago. The pain I am feeling is undescribable. I had pulled myself together 2 weeks ago, and now I am falling apart all over again. I will find the courage to be strong for him today, and get the crying and anger out of my system before we go.
I will let you know tonight what we find out today.
Love Lisa
Hi Lisa Ann- my heart goes out to you and your family. I remember all too well how much torture it was waiting for tests, for results, for doctors. I’d have days when the only time I could cry would be on my way to work, driving almost one hour on the highway. By the time I’d get there I was a wreck, but I had to show hope in front of my Dad. A dear friend said to me, “he needs to see hope in your eyes”. I hung onto those words and for the most part, my Dad saw hope in my eyes. Sometimes he also saw how deeply sad I was that all this was happening. Most of all I know he felt how very much I loved him. I am certain that he knew he was my hero.
My thoughts and prayers will be with your dad tomorrow hoping for the best possible outcome for his procedure. It is a very difficult journey, I know your dad appreciates all the support he is receiving. I am sure he feels stunned at the speed that everything is occurring. Your love and support will be the best medicine he will ever get. Prayers also going out to your family and you… it is so difficult watching someone you love become ill. It changes your entire life and it forces you to grow up, regardless of how old you are.
Peace to you and your family,
Missing U
Dad’s CA-19 came back 62 with the norm being 30. Can anyone enlighten me with some info on this.
Thanks Lisa
Hi All,
Well Dad has his Endoscopic Procedure scheduled for tomorrow morning. It has been very depressing around here the last couple days. They say the procedure will only take 20 minutes, so I guess the Gastroenterologist is not planning on placing a stent. He does not think this is CC, but another cancer that has spread to the liver and ducts.
It is all such a waiting game. I sometimes do not think that some of these Doctor’s care about what the patient and the family have to go through waiting for a diagnosis.
We were told it was CC and that it was in the advanced stages. We were also told that it would only be 3-6 months before he would be taken away from us. I don’t think that we should have been given a diagnosis if they were not truly sure. It has been two weeks of worrying and wondering what tomorrow will bring.Dad is just sleeping and sleeping. He is taking his Hydrocodone much more often now as his says the pain relief is not lasting as long in between doses. It is so difficult to try and spend Quality time with him, when he is never out of his bed. Dad doesn’t talk about the cancer to me at all. I don’t know if he thinks he is protecting me or what. Is he angry, depressed, frustrated or is he just getting that much sicker in two weeks.
He hardly eats anything, and some days sleeps 22 hours out of the day.Very worried and frustrated,
Lisa
KarenB,
So sorry to hear that yu lost your younger sister to this horrible disease. It must be so incredibly hard for all of you, especially her children. I cannot even begin to imagine. My Dad is 73, and I cannot except the fact that we may lose him. He does not plan on trying Chemo or Radiation or anything like that, and we respect his wishes. As I am told so many times, I just need to try and enjoy the time we have with him and let him know just how much we do love him. Every 5 minutes I get to talk to him now, mean more than I can tell you. I feel for my Mother who is faced with losing the man she has loved for 30 years. She is hurting and her heart is just breaking, yet she tries to stay upbeat and strong for him. I try and stay strong for her, yet it feels like my heart too is being ripped in half. Currently, everything is still somewhat normal around here. Dad can still take care of himself, and make his own decisions. It is just hard to watch him be sick all the time, and not wanting to do much of anything. He is so much a part of everything around here, I cannot come to terms with it all.
We will know more after Friday hopefully, but I do not think the outcome is going to change.Thanks for Your Support and Thoughts,
Lisa Ann
Hi Everyone!
I just want to say I know exactly what all you are going through. I lost my younger sister 9 months ago to this terrible disease. She was having some pain in her shoulder, but other than that, was always healthy. She worked in a nursing home, so we just assumed it was from too much lifting. The pain kept getting worse, and when she went in and had a CS and then a Pet Scan and found out it was cancer, we could not believe it! We took her to the Mayo clinic and then to a cancer center in MN. She fought as hard as she could, unfortunetely she had to be on so much pain medicine, it stopped her intestines from working, and she got a blockage, couldn’t get food down anymore. She passed away six months after being diagnosed. I still wish we would have done so many things differently, but, I am happy for the time we had, and I try to spend as much time with her four children as I possibly can. I really wish they could find a cure! My thoughts are with you all, Karen
Missing U,
I want to thank you for your advice and support. So sorry that you lost your Dad, I know how hard that must be. I find myself trying to prepare myself for what lies ahead for him and us as well. We too are supporting him, and are always here for him. As of the other day, they did prescribe Hydrocodone, and he claims it is taking the edge off the pain a little. It is a waiting game right now until Friday when he has the Endoscopic Procedure done, and we get a more definite diagnosis. As I have said in another replay to a post, the scariest thing is not knowing what to expect. How sick will he get, will he still have all his facilties to make decisions or tell us what he needs, etc.
I will keep you posted, as I am sure I will need someone to talk to in the weeks and months ahead.Bright Blessings to you and yours,
LisaHi Jay,
Thanks for getting back to me with the Information on the stent placement. Sounds like your Dad is a fighter. I am not so sure about my Dad. I think right now he is angry and just giving up. Of course the Doctor’s are not giving us much hope either. They say that Chemo will not make a difference, and will just make the time we have with him miserable because he will be sicker than he is now. I do not know what to think. My Dad will not choose Chemo anyhow, so that is kinda out of the question. He watched his first wife die of cancer (breast cancer) when she was only 42. My little Sister also passed away after a long battle with Ewing’s Sarcoma(a rare, very agressive bone cancer), when she was only 26. So needless to say, he certianly doesnt think there is a fighting chance.
Our priority is to keep him as pain free as possible, and to enjoy all the time we have together with him. I had a good night with him tonight, he actually ate a little dinner(not enough to feed a chicken) with us tonight, and we talked out on the deck for a little while. If I forgot to mention, I am lucky that my Parents live with us, so he is always here, and I can grab every bit of time I can with him and my Mom.
He started taking Hydrocodone for pain relief, and he seems a little more like Dad.I will keep you posted, and you do the same.
You and your Dad are in my thoughts and prayers. Keep the Hope.Lisa
Lisa,
Dad’s stent has been replaced a couple of times. Def. helped with biliruben issues and other than recurring infection which may or may not be related to stent he feels reasonably good. Opting for strong course of chemo but must wait for antibiotic regimen to be done. Will have to wait to see. From what we know after endoscopy its cc, with liver stomach and gall bladder involvement. Dad would like to know the world record for living with the disease…something to shoot for. Will keep you posted. Good luck to you!
J
Hi Jay,
So sorry to hear about your Dad as well. Can you tell me how the stent procedure worked and did it offer your Dad any relief? My Dad just seems as though he is giving up on life and for the most part sleeping his days away. My Dad’s too is inoperable and we won’t really know how involved everything is until this coming Friday when they do the Endoscopy. I will keep you and your Dad in my thoughts, and please keep me posted. The scariest thing is not knowing what I should be expecting to happen, and how fast it is going to happen.Lisa
Hi Lisa. My first post as well. My Dad, 82, had been diagnosed in Aug. with cc, but now we’ve learned its inoperable and spread throughout the liver. Already been thru the stent procedure and now plan to meet with oncologist to assess treatment options excluding surgery. A bit of a blow to an otherwise strong and optomistic soul…and crushing to his family. Good luck and keep the faith!
J
Lisa Ann- I lost my Dad to this illness in January of this year. He was 69 and in pretty good health. His illness was diagnosed at Stage 4 and was quite aggressive- only having been diagnosed when he experienced pain in his hip. No one could believe he was as sick as he was when diagnosed- he didn’t look sick nor did he really complain much. They discovered he had extensive bone metastasis and 4 weeks later found the primary to be CC. He too had lost about 25 pounds and was constantly vomitting, having no appetite and difficulty sleeping.
His doctor prescribed pain meds immediately. He began on Tylenol 3, then went directly to Dilaudid upon diagnosis. I too was frustrated at the length of time between appointments.
Looking back, one thing I’d do differently was actually take my Dad to the Emergency ward. At the beginning we waited for his appointments. For him, it would not have changed the outcome because his illness was very advanced when discovered. However, had I taken him to Emergency before waiting for the appointment, he would have had the proper treatment for his pain sooner. They have oncologists on call at hospitals and they will prescribe a pain medication for him.
This is something you can take control of now… he doesn’t have to suffer needlessly. If you get resistance, ask to speak with an advocate. In this day and age, there is no reason that an individual needs to be in pain.
We lost my Dad within 10 weeks of diagnosis and it was the most difficult time in my life. My comfort lies in the fact that my mother and I were his constant support and we were there for him until the very end. Regardless of what happens, your dad needs to feel your support and love.
I wish you peace and strength. My prayers go out to you and your family that your dear dad is well taken care of.
Bright Blessings,
Missing U
Dad went to see the Gastroenterologist and he says that the Radiologist may very well be correct in his Diagnosis, however he will not commit until he does the Endoscopy and a Biopsy. He states it could still be Esophogeal Cancer, Stomach Cancer, or Colon Cancer that has spread to the Liver. None of which is good either.
Mom took him this morning for bloodwork, specifiacally a CA-19, and his Endoscopy is scheduled for next Friday.
Dad is in alot of pain today, and just sleeping the days away. He has no ambition to do anything. I cannot beleive that this is not Cholangiocarcinoma based on the symptoms. He does not have symptoms related to the other cancers he mentioned, except for the mass in his stomach. They have not prescibed anything for Pain or to try and treat the symptoms he is having, and I am very upset. Mom called the family physician this morning to see if he would call a script into the pharmacy. He is suffering for no good reason. Seems like it is inhumane to make him wait another week to see what the outcome of the endoscopy is to prescribe something.So to say the least, I am very frustrated. I will keep everyone posted.
Thanks for listening, Lisa
Ted and Patty,
Thank you for your words of encouragement. I am very hopeful that we can make him comfortable and pain free, so that he does have quality of life. The hardest thing for me right now is to think I will have to watch him suffer. I am praying that he will have more time with us then the Doctor’s are stating. 3-6 months is scary,and isn’t enough time.
I am glad to hear that Patty is enjoying life to its fullest with you and family. Thats all I want right now. Dad sleeps alot of the day away, and isn’t doing anything that he enjoys or would do on a daily basis. He just doesn’t feel well enough, The hardest thing is to try and get him to eat, but he ate more in the last two days, then he has in weeks.I will keep you posted.
My Thoughts are With you and Patty,
LisaDear Lisa,
There is one thing for sure, you are among friends here. Friends that understand and care about what you are going through right now. My dear wife, Patty, was diagnosed in Febuary and we have been living “one day at a time”. She is 61 years old. For the first three months, she experienced much of the same things that your dad is going through right now…… unsucessful surgery, nausea, loss of weight. I thought, several times, that I was going to lose her during that first three months. I am happy to tell you that there is still hope that your dad will have some good quality time if he can get the symptoms under control. Patty had the stents placed in march and she began a gradual but steady improvement in her overall health. She decided right from the beginning that she would not have any chemo or radiation. She wanted quality of life rather than quantity of life. I have been behind her completely in her decision. For the last four months her overall labwork has been excellent, except for her CA19-9 which has been steadily climbing. She is on IP-6 and AHCC plus other supplements and lots of carrot juice. We have been enjoying doing regular activities such as eating out and going to church regularly. She has not been to a doctor since March as we would just rather “take it as it comes”.
I tell you all of this just to let you know that it is possible that your dad could have some good time ahead. Enjoy each moment with him and thank God for those moments. Patty and I put our complete trust in God and know that he is in control. We know where our eternal life will be together.
Take hope LIse and our prayers are with you.Ted and Patty
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