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It sounds like you have been carrying a very heavy load for a very long time. Please reread the caregiver’s bill of rights. (Lainy recently posted it again). It is more important than ever that you take care of yourself, because you will not be able to help your loved ones if you are spent. Sometimes, my husband and I don’t even need words, we need time just to cuddle and hug each other. Before my cancer dignosis (May, 2007), it was easy for me to ignore my wants and needs if I believed my loved ones had needs I could meet. But always giving and never receiving leads to an empty vessel. One of the things I’ve been learning while dealing with my cc is that it is wise and can even be fun to let others take care of my needs some of the time.
My Mom recently passed away, too, so I understand the feeling of numbness and just putting one foot in front of the other to keep going. Please let others help you in this difficult time. I am praying for you and your family.
I believe in the healing power of tears. They are water of life. Thus, I was sad to hear your news and willing to let my tears fall for all of us going through difficult times. I think I spent more time in the hospital in the last 2 months than in any previous 3-month period of my life, but I’m home again and looking forward to Christmas with my family. I believe you and your Mum have the strength to get through the subdued Christmas this will probably be for you, but I will continue praying for you.
I don’t know what your dad thinks of the internet or the computer, but it doesn’t hurt to remind him that none of us came with cancellation dates on forehead, feet, or anywhere we could find. If it helps, read to him from this site. Many of us have been dealing with diagnosis/recovery after 3/5/or even 10 years, so don’t let him dwell on the 2-week ticket punch. We take one day at a time and try to enjoy something every day. Most of us found websites that didn’t seem to help at all. We now try to avoid the sites that are depressing, but this site has never been depressing to me.
Your doctors may know the disease and the medicines, but the best expert on your Dad is himself. He is the team leader. Any time he feels that his opinion doesn’t matter to the doctor, he can fire the doctor and find another.
I believe that, besides the power of prayer, the cancer center has played a big part in my still fighting after 2 1/2 years because I have been able to gather my team and be involved in all the decisions I want to.
My Mom was 86 when she was diagnosed and chose not to pursue an aggressive fight. Her oncologist didn’t think she had a year then, but she lived almost 3 years more with prayer as her primary ally. These are the stories often shared on this site because we all go through so many of the same things, we are encouraged by each success no matter how little or major, and the encouragement helps us maintain the fighting attitude. Yes, we also all have down time, but the encouragement helps us get back up, dust ourselves off, and get back into the fight.
At the top of this page is a search forum. You can enter as little or as much as you want in any part of the search function and it will lead you right to relevant posts. You might want to enter San Diego doctors or some variation of that to see what comes up.
Wish I had found this site as quickly as you have. It is so supportive and eliminates much of the frustration I started out with because of difficulty finding relevant information.
Best wishes in the battle; no matter how long it lasts, there will be help for you here.
LouiseDecember 3, 2009 at 12:06 pm in reply to: My father was diagnosed on October 29th with Cholangiocarcinoma #33449
Yes, the statistics can seem grim and depressing, but they are based on history. Statistics are not good predictors of an individual’s results. Most of us on this site have gotten discerning about what sites we visit, because the depressing ones don’t offer hope or even much good advice. This site, however, manages to share encouragement, results, and information that makes for a great resource. As you become an informed advocate for your loved one, the doctors will consider you part of the caretaking team. As long as your dad is informed, he will and should be encouraged to make all the decisions he can handle.
“They also serve who only stand and wait” was said about members of the military, but it applies to all the caretakers who want the best for their loved ones. By educating yourself and being prepared with your list(s) of questions, you can help the doctor stay current and consider alternatives. A good doctor appreciates your input, because they may know the medicine and the “norms”, but you know the patient in ways they don’t.
My cc diagnosis was in May, 2007 with jaundice, ERCP, and stent in the bile duct, but my cancer was extra-hepatic. I have not had chemo and radiation simultaneously, but I have had both. Even if you start a plan and only have one treatment, it is still the patient’s option to say no, I don’t want to continue that. The side-effects are more than I want to deal with. What else can we try? Have you considered Gemzar/Cisplatin?
My suspician is that many of the sites you visited were not very personal and focused on the stories that had short time between diagnosis and death. One of the tings I value on this site is that we have patients who have lived 3, 5, 7, 10 years or more. And what’s fascinating is that they share stories in details, what they’ve experienced, what they expect to try next, what changes they make and why, what now seems “normal”, how faith has helped. And the people who’ve survived longest still have lists of options to try in the ongoing battle.
My Mom was also diagnosed but at the age of 86, she chose not to pursue radiation or active chemo. When she chose a low-dose pill to take at home every day, her oncologist didn’t think she would last a year. Prayer was her best ally. She lived almost 3 years after that, passed away Aug. of this year.
When the patient makes informed decisions, they tend to do well and need all the support they can get, no second guessing. And if the doctor doesn’t agree with the patient, fire the doctor and find one who supports the patient’s choice.
Hope this helps. Gotta run. Need to be at the hospital in an hour, having blood transfusion (2 units) because my hemoglobine dropped to 8.3 or something like.
Post as often as you like, you will get responses.
I think our date has to be cancelled. Work was going to pay for the conference and travel expenses, but I’m quitting the job, so I don’t expect them to pay. And I was so looking forward to seeing you then.
Julia, don’t be sorry about the chuckling. I just didn’t want to laugh in
Tom’s face about it, but I was tempted. Now I think he understands why women are not in a hurry to go get an annual mammogram. I’m sure he’s in no hurry to get a repeat test.
Didn’t get the new chemo yet, so I’m hoping to hear from them real soon. This “hurry up already” “WAIT, need pre-cert” “Hurry up!” “Wait” is another roller-coaster I dislike. If I don’t hear from them pretty promptly at 8:30, I’ll probably be calling them. I suspect dehydration, low hemoglobin and maybe other problems need to be addressed before I can start the chemo. I’ve experience some disorientation (What day/time is it?) and some weakness in the legs. So I’m waiting to see how this day unfolds.
Bless you all!
As Marion indicated, this is not a one-answer-fits-all. Please take notes throughout the appointment. In fact, don’t start with a blank page, start with all the questions that occur to you now and write them down. The amount of information to be conveyed both ways can be overwhelming and if not written, it is easy to forget what was asked or said. I don’t know how alert/informed your mom is or wants to be, but most patients benefit from having an advocate to ask questions. Ask to your heart’s content. Let your mom take the lead, but if she doesn’t want to ask questions, you should then start asking. Most doctors will provide the patient with answers to any asked question, but they don’t often volunteer the possibilities or the unlikely events. Many times, when the patient describes symptoms, the doctor responds with “that is normal.” If I had known it was normal, it would not have worried me as much, so I like to ask what to expect as well as what alternatives I have. An iimportant part in what treatments to follow-up with is whether we are dealing with quantity of life or quality of life. As a patient, I’m fighting for every minute of life I can get, but the day may come when no treatment is expected to help me get better, and treatments could merely prolong the pain. That might be when I would consider giving up. My mom was in her 80s when diagnosed and preferred staying home with little treatment. Her oncologist didn’t think she would live a year more, but she almost made 3 years anyhow. So even if a majority of the people on this board all recommended chemo or radiation, they could all be wrong. If your mom is willing and interested in making that decision, we would all support her in that. If she wants you to make the decision, go with your instincts and you will be right.
Hang on for the ride of your life! Do you like roller-coasters?
If you can’t convince your Mom of the need to go to the ER, there is a simple “test” you can do at home to see if dehydration is the issue. Remember, headaches and dry, cottony mouth can be symptoms of dehydration. As for the no-lab test, pinch the skin on the back of your hand to form a “tent.” When you let go, does the tent hold in place or disappear. If the tent disappears immediately, dehydration might be happening, but it is not the major issue and can be addressed by simply trying to remember to take more frequent sips of any fluids, though broth and clear liquids are usually best if vomiting has been a problem. Also, eating ice chips can help if temperature is not an issue. If the “tent” of skin holds for several seconds, the dehydration is serious enough to merit an IV in the ER. I had a scare the first time I was seriously dehydrating because I didn’t know what was happening, but my own voice didn’t sound normal inside my head; almost seemed like the whole head was hollow. And if you’re getting fluids through an IV, they can also put an IV medication to alleviate the nauseousness at the same time. My serious dehydration occurred while I had stents with external drainage bags. When the drainage was allowed to flow, I could easily lose 1000 ccs of fluid in a day, which is impossible to replace with sips from a cup. I had several days in a row where I was given a couple of bags of saline solution via IV, but I bounced back when we capped off the drainage tubes. Hope this helps someone, and of course, anyone in ER should know the seriousness and solution for dehydration, even if your onc is not available for consultation.
I think I can relate to your feelings. My initial diagnosis was in May ’07 so I’m approaching the 3-year survival point. I’ve recently been experiencing the worst pain of my life due to blockage near the kidney. About 2 weeks ago, I requested (and received) help for pain management. I have had lots of Dr appt and treatments. Yesterday, they inserted a stent that will probably need to come out in 4 months. The question to answer at that time is if it will need to be replaced or if the coming chemo/radiation will shrink the tumor that has caused blockage. Though my bowels are not back to normal yet, the stent should prevent the kidney from experiencing permanent damage. So far, my creatinine count has been improving.
I don’t know if you have done any funeral planning, but Tom and I visited the local funeral home about a year ago. We bought a cemetary plot and made plans. We ordered our headstone, and it is beautiful and meaningful. When Tom’s Mom passed away 27 + years ago, he and I were the ones who met with the funeral director and felt the stress of needing to make many decisions while dealing with grief in a short period of time, wondering what Mom would have wanted, and how to involve the family members who needed to work through their own grieving. By doing our own planning, we were able to avoid the rush and wondering about the deceased’s wishes. The planning almost felt like planning the biggest party of our lives. Tom asked the funeral director about something that would not have occurred to me. Many people associate black with mourning and the dominant color at many of the funerals I’ve attended was black. I had told my daughter I don’t want a sea of black when my time comes; I want a full rainbow of color to celebrate the life we’ve had. So, our funeral director is going to have a florist color 200 carnations. If 200 people come to my funeral, each will get a carnation and I’ll have my sea of color like I want. The headstone is in place and I’m discovering how peaceful the cemetary seems. I sometimes stop by just for another look. We ordered a statue of the Good Shepherd, so our plot is not one that should require a lot of searching on foot when someone wants to visit. My sea of carnations may compare to your year-round blooms of color at the cottage. I can picture it. If you go first, I hope you’ll be one of the first to greet me at the Pearly Gates. If I go first, I’ll be watching for you.
Speaking for myself as cc patient, I don’t care what or how many germs my grandson has been exposed to or is carrying. The emotional lift from being able to spend time with him would be tremendous, and I believe the adrenaline, hormones, and joy in living more than elevates our immune defenses. And the memories and photo opportunities will be even more precious as time passes. If the opportunity to visit actually occurs, go for the gusto! Those are the moments to live for. Is it time for a chorus of “Viva la more?”
Hope the visiting happens!
It’s my understanding that if they try to remove the scar tissue, they create more, and scar tissue is harder to cut than the original, so it would tend to cause a lot more scarring. Sorry to bear such news. I have my share of scar tissue, too. Hope you get better answers on other questions.
Just like Sue, I live in Indiana. Chicago is only a couple of hours away and I would realy love to join you all and meet Marian, but I don’t believe it will happen this November. There always seems to be more to do than I have time or energy for. Between faily, job, and health, I believe I have a full plate. Maybe while you’re together, we could have a virtual party, with lots of us in the chat room on here?
You used the pronoun “They” at at the beginning of the second sentence. Are you referring to the friends and Hans, or to the farts?
You want bad about Kris? She always makes us laugh, sometimes till it hurts!
Wish I had known some the things on this thread a couple of weeks ago. I would have had a long list of questions for the oncologist’s receptionist. As it was, I only asked about 3 or 4 questions, but enough that she had to find answers to some and call me back later. I had a liver biopsy Tuesday and they said that the Dr. might have results today. I could call Friday if I had not heard from him/his office by then. Thank goodness, they called this am with GREAT news. No malignancy in the fluids withdrawn (about a teaspoon). I just had a PET scan this morning. I hope the results will be as good, but I won’t find out till next week. So, I’m still waiting, but at least I think I’m recovering from whatever infection kept me home a week.
My diagnosis was clearly cholangiocarcinoma, but it was extrahepatic. The prognosis was bleak, but I’m still here after almost 2 1/2 years. I had the Gem/cis cocktail (2 weeks on, one week off) as first battle, and it reduced the tumor to the point that it did not show up in the scan. The cancer seemed inactive for a time, but returned as metastasis. Another series of the same coctail again did its job. If you use the search function and put my name in the author box (no subject needed), you can read my previous posts to know more of my story, or contact me via e-mail if you prefer. You didn’t say how old your Mom is, but I was not warned that this combination of chemos tends to thrust pre-menopausal women into menopause, and it did me. As you go through this maze of experiences, you might feel that you are earning a focused MD. In some cases, I believe the people on this board know more about cc than the Doctors some of us deal with. If possible, you might want to find out how many cc cases her doctor has dealt with. Also, second or third opinions are very appropriate. As much as she is willing, your mom should be encouraged to learn about her case and make her own decisions. As the daughter, your job is to support whatever decisions she makes, and if she does not want to make the decisions, be prepared to do so.
Best wishes and visit often! Keep us posted on her care, your questions or frustrations, anything you want to ask is open to discuss. And if you don’t want to ask, you just want to know, use the search forum. We’ve had people admit to lurking around the site for some time before logging on to do their first post. That is okay, too. You are not forced to divulge any info you do not wish to.
May I also say, welcome to this board!