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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
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Hey everybody, just checking in. Judy's service was beautiful. My family and I would like to thank everyone on here for all your help and advice. We miss her dearly but are so thankful her suffering is over. Thank you for the e mail Marions. Went to work today for the first time for a full day and man does it feel good. Every time I go out of the house I feel a teeny bit better. I know when I'm looking at some of the people out there that one of them has lost someone special to them and it makes my hurt go a little further away. We had over 200 people at Judys service, she cut a pretty wide swath. One of my favorite parts was when we had a group of Mennonite children sing the songs Judy picked out. They would come by the house and sing to her and she loved it. When they found out Judy had passed they insisted on coming to her memorial and singing because she was their lady, we're not even Mennonite. Life goes on in a beautiful way. I'm no where near done hurting or crying but I know Judy would make me toughen up for our girls and grandkids, so that's what I'm gonna do. I love you all and hope and pray for the best. Tommy,,,,,, Hi Lainy.
Judy's final breath was taken at 5:26 AM, March 9 2011. This has been a terrible final week. I am so glad Judy is no longer suffering. I will miss her more than I can say. Thank you to everyone for helping me along the way.
Our experience with hospice has been so-so. I certainly appreciate the degree of comfort my wife Judy is experienceing. Rarely does she have any pain. I'm not so thrilled about the effort they make to keep a schedule. If it weren't for Lainy I wouldn't have known any better. My sister has been in the hospice business for 25 years and when she came out to help us get started it was a God send. Our nurse is as baffled with Judy's experiences as any body. One day you would swear that she is taking her last breath, the next she is out of bed chatting with whoever happens to be here. We all see the decline in strength and overall health but Judy will not quit. A dear friend came over and had a "final talk" with her, then we prayed. I have never seen Judy at such peace with everything. I mean everything. After our friend left I felt something so powerful and good in our house that lasted all day, all night and all the next day. I had never felt this kind of presence in my life. Me, not being a religious man, I have to tell you, I truly believe in the God our friend prayed to. I find it so hard to believe that for so many years I would not let this kind of power in my life. I have to wonder if Judy saw an immediate change in my attitude that she was just so relieved. Sorry about that, got a little off track. Anyway our nurse told us we could decline their help anytime and come back whenever we wanted. I don't think we could take as good of care of Judy without their help. Our three daughters and myself agree that Judy made the right decision to bring in hospice when we did. We all got to know Judy's nurse a little better before we really needed her. And I mean that in a good way. My daughters and I are fortunate that we have jobs that are allowing us to take off work pretty much when we want or need to. Between the four of us Judy does not spend 1 second alone. We have read the caregivers hand books that hospice gave us and we have all seen the hours to minutes before death signs for the last two weeks. I have never loved my wife more than I do now. We hope she passes into the arms of Jesus peacefully. I have never been able to say something like that before. Thanks to all on this website who has helped me along the way. It's not over. Tommy
I feel truly sorry for you Andie, and your Mother. I have not visited this site for a couple of weeks as my wife, Judy, is in about the same shape as your dad. This has got to be the toughest times of our lives. Judy doesn't get mad but I can see the hurt in her face every time me or one of our girls has to help her with something. Our hospice nurse has let us dictate every move she makes. I'm sure she will take control of the situation when the time comes. I'm with everyone else, you are doing a fine job. Some dads just know how to raise wonderful kids and I think your dad was one of them. I can only hope I helped my wife with our 3 girls. I don't think I have ever been this tired in all my life, and I have tons of help. The one thing that helps me more than anything else is a restful sleep. Hard to come by though. Hang in there Andie and know that your dad loves you. One last thing, Hi Lainy. Tommy
Well Rick, I wish I could say something to make things better for you. Good luck, hang in there, one day at a time, believe me I wish I could. All I know is I have found great support right here on this site that nobody else can give. Whenever I look at other peoples posts it makes me feel better knowing I am not alone in this. I don't feel better because someone else is having the same pain and downright crappy things going on as my wife does. I just feel better. Hopefully your day does get better. I am very fortunate in having three daughters with me to care for Judy. Sometimes I feel so alone but I'm not. Wish I could be there with your wife to give her some comfort. Tell her to look here and she will find it. Tommy
Thank You Lainy for being You. The girls and I are not too impressed with Judy's Hospice people. My big sister is a Hospice Nurse in Utah and she is not satisfied with our care. Our Nurse or Dr. is not prescribing the same medication as my sister would use so I asked our Nurse about them and she had never heard of them. My sister said the meds she would use have been around for quite some time and work really well. Long story short, Big Sis is coming to our rescue. She will be here next Friday. If it weren't for your posts I doubt if I would have asked my Sister for help or advice. Thanks again Lainy. Tommy and the Girls.
Dear Lotsofquestions, my wife was diagnosed with cc, tumor in the bile duct, in April 2009. Our first visit with the oncologist he gave her weeks to a few months without treatment and maybe 18 months with treatment. She did 30 rounds of radiation and then, if I remember right, 31 rounds of chemotherapy. She started with Gemzar and Cisplatin and as time went by they took out the Cisplatin as it was just to hard on her. She also went through 5 different stints, then Dr. put in a permanent stint. We now have Hospice visiting weekly and in terms of living, Judy is still doing lots of things on her own. Her pain management seems to be my main concern and they are doing a good job with that. I don't think Salina Ks. is as well known for their cancer center as they should be. I guess I'm just saying we never really knew what to expect but her Oncologist kept us pretty well informed of how things were progressing. When it comes to advice, information or just plain whining, this is the place to be. If it weren't for dear sweet Lainy and Marions, I'm pretty sure I would have gone bonkers. All the advice you have seen on here so far is advice these same wonderful folks gave me in the beginning. Hold on tight and pray because it is a roller coaster ride. Believe it or not, we have had a lot more good days than bad ones. Wishing you the best. Tommy
Thank you all for the advice and well wishes. We do have a living will and Durable Power of Attorney naming me as the decision maker. I get so involved trying to take care of Judy that I forget what all we have done. Thanks for reminding me. I will talk with Judy's nurse and Judy about the importance of staying on top of these meds. Right now she is coming out once a week to check on things and that seems to be working pretty well. The Nurse said she will come more often as the need arises, I just hope I recognize the need before it becomes unbearable for Judy. With the help of our three girls I feel pretty confident we will take good care of Judy. Thank you again for everything. Tommy
I just finished reading this article and it made me feel better about our decision to bring Hospice on board. It also makes me realize how tough my Judy is. Watching the progression of this disease from the beginning, April 15 2009, to where Judy is now, I have to wonder if we should have brought Hospice in sooner. Her quality of life has certainly diminished, not to the point where she can't do things for her self, but the constant pain and being just plain sick all the time would drive me crazy. From the beginning all decisions pertaining to treatment has been made by Judy. Now that Hospice is coming to the house all decisions are still made by Judy. I appreciate that is how it goes, but sometimes I think she lets her pain go to far before she will take a pain pill. I wish there was someone to tell her a schedule to follow so she wouldn't have any pain at all. There are instructions on all the medication but no set schedule. Maybe I'm just a big baby because I DON"T like pain. Surely when it gets too bad she will take meds regularly. So far that is the only thing I can complain about. Judy is still in control of things and I'm worried that when the time comes that she can't make these decisions, who will? I hope they let me, or listen to me. I am scared if they don't hear it from Judy they will not do anything. Thanks for listening.
Thank You Lainy, Judy had her second Hospice visit today. Social workers came to visit. Her Nurse comes again tomorrow, just to check on her I guess. Thanks for continuing your posts. I think of you and your family often. Tommy
We also had a wonderful day. Judy is just such a strong person, it amazes me every time I see her smile. Our 3 girls, their husbands plus all the little heathen grandkids never fail to make Judy feel good. She was pretty wore out but never complained. And I agree Susan, Thank you so much Lainy for setting such a wonderful example for caretakers everywhere. Tommy
Dear Lainy and everyone else, Judy's cancer marker is continuing to rise. I think the next time we see her Dr. he may suggest hospice. He has mentioned it before but Judy continues the fight. He has changed her chemotherapy around several times, eliminating the cisplatin and using only gemzar. The gemzar routine seemed to be holding things in check until the last two treatments. Dr. said we would look at different options if her cancer marker continued to rise. I am thinking the only option left is hospice. I am worried about the kind of care she will receive after hearing Lainy's story. I have heard bad things before but with dear Lainy it hit closer to home. I have a pretty short temper when it comes to my family. Reading Lainy's posts and others I have learned a great deal about patience and caring. I don't think anybody cares more for their spouse or loved ones than I do. I just don't like to think of anyone mistreating my wife. Like I always tell my girls," do you want me to kick their #*% ". Lainy, Thank You for sharing, I have a hard time with this. Tommy
Thank You so much Marion. Tommy
I'm not sure where to post my question so I hope I'm not butting in. My wife had a CT scan monday, talked to the Dr. before chemotherapy today and the scan showed ascites. Dr. didn't seem to be to concerned about it and went ahead with chemo. Our oldest daughter did a little research and her information makes me feel we should be concerned. Any help or advice would be much appreciated. Tommy
Dear Lainy, I am terrible sorry for your loss. Just reading your posts has helped me so much. Thinking of you and shedding tears I've been holding. Tommy.
Dear Lainy, it's a good thing swearing is not a polite way to express ones feelings. I feel for you as a dear friend. Get them people straightened up. Thinking of YOU and Teddy. Tommy
Dear Lainy, I don't post often but I visit everyday. I am so sorry for you and your husband Teddy. I only hope I can be as strong and honorable as you when it is time for my Judy to go home. Thank you for being here for me to lean on and learn from. Tommy
Hi Dave, Judy, my wife was diagnosed April 15 2009. The doctors told her about radiation and chemotherapy but didn't think it would do her much good and gave her 2 to 6 months. She did the radiation,30 treatments, 26 rounds of chemotherapy and she is still going. Judy is only 54 and still wants to live to be a 100. Strong willed people can be amazing. Chin up my friend. I think LOVE and PRAYERS and FAITH and DOCTORS are the way to go. I don't use this website as often as I should, but when I do, I always learn something and can tell all these wonderful people really do care. Tommy
Margaret, my wife Judy gets somewhat grouchy after chemotherapy. She is doing the same drugs as your husband. Usually after a couple three days she is back to her same old pretty self. She is pretty tired and wore out for another week. I think my breaks from caretaking come to me at work. I still work full time. I'm in agriculture also. Our work week depends on the weather and the season. Sometimes 80 hour work weeks. It does seem like a never ending ride. Doctor visits, lab, chemotherapy, grocery shopping, house cleaning, transfusions, the list of tasks go on and on. Judy has been wrestling with this cancer for 19 months now. She was always a busy person, working, gardening, taking care of grandkids. That is what seems to bother her the most, not having the energy to be with her babies. We have 8 of them. We are in our early 50s and certainly was not expecting something like cancer to cut our life together short. I know the feeling of wanting to pack up and leave, but you know and I know we could never do that. Our 3 daughters live fairly close to us and visit often. They do call first. We would keep the kids quite often before, now only when grandma insists. I could go on forever about the hassles of this disease but I don't have it. Whenever I get to feeling really mad at Judy I just remember the reason I married her. I love her. Take care of yourself, relax, have a drink or whatever and keep on getting up in the morning. Make other people take care of themselves. We have someone who has taken care of us and now it's our turn. Happy Thanksgiving. I realize now, more than ever what all I have to be thankful for. Our 3 girls make sure I,m not in this alone, couldn't do it without them. Hang in there, We can do this.
Marion, thanks for being here. Judy did radiation last summer,09, and has done 19 rounds of chemotherapy. I am not sure what type of radiation treatment she had. The treatment I heard about on the radio sounded like something new and now available at the treatment center. I called and asked about it. Didn't get any answers but did get an appointment with the Radiation Dr. she had last summer. I feel like I am wishing on stars and grasping at slivers of hope. This seems to be the best news we have heard in the last eighteen months. Scared of getting our hopes up. It just sounds so much better than what we have heard. We will know more about it next Wednesday. Thanks again for being here. This has been the most unexpected and emotional turn of events in our life. Thank You so much. Tommy
Hey everybody, Tommy here, Judy is my wife, not my mother. One of our girls was using this site as well as me. I haven't been on here for some time. I am pretty sure our oldest daughter, Jacque, is the responsible party for the updates. Judy did fine with the spleen removal. We have a tough time keeping her pain under control. I heard of a radiation therapy on the radio today that targets hard to reach and inoperable tumors. I think it is called trilogy. If anyone has heard of this kind of treatment please let us know. Thank you for all the support you have given our family. It is nice to talk to people without really having to talk to people. Thank You.
I often wonder if Judy doesn't have a tumor in her pancreas because of all the symptoms that she has. When I research on-line everything points to that. Does anyone know if the symptoms for CC and pancreatic cancer the same? Or if CC spreads to the pancreas do you still have the same symptoms?
We have learned that sometimes the family is the best advocate for the patient, if the patient can't be. So, if you don't feel right about something keeping pushing and demanding answers.
Last night was a little ruff for Judy. She's been running a fever of 100.7, but no one seems to be concerned about it. We've even mentioned to the nurses that they've been giving her tylenol since Saturday so whey would you have a fever at all if nothing was wrong. We were told that it's normal for patients to run fevers after a major surgery????? Her oxygen wouldn't stay above 90 so they had to up it from 2 1/2 to 3 1/2. Which the respitory therapist seemed more concerned about than the nurse. He said that they were suppose to start weening her off the oxygen today.... guess not now. Her lungs also rattle which the nurse said was just because she needed to cough.... well throughout the night the rattle noise got worse and you could tell that finally the nurse was starting to get more concerned because she came in the room more often to listen to her. Judy is very sleepy and yes still seems to be in pain. She's still on the morphine epidural in her back and the PCA pump that has dillaudid (sp) in it. Yesterday she hit her button for the pump 16 times, not sounding to me like they are gonna be takin' her off that anytime soon.
Has anyone else experineced any of this after any surgeries?
At about midnight last night they finally were able to get her pain under control and she was able to sleep and so were her daughters- they will NOT leave her side. This morning her spirits seem to be better as well and says she really wants to get up and walk, which she hasn't done yet.
We are a little worried however because again they are talking about trying to take the PCA pump away from her.... or "ween" her off of it. They did that when they moved her from ICU to her room and then she had to play catch up and it was horrible! So, it might be another long day today.
The Dr. has already been in and said that he really feels happy with the way things are going. He also said that we should get the pathology back on her spleen Monday or Tuesday. Is it weird to be exicted about getting those results back ??
Oh, and her platelets are back! YEAH!!!!! Which could mean that in the future she could do more chemo. They haven't been above 100K since February cause her stupid spleen was hoggin' them all. Today they were 250K.
Today has been ruff. Her pain is HORRIBLE and they can't give her any more pain meds because it will compromise her breathing. However, she is out of ICU and I see that as a positive sign.
So no partying just yet. Her daughters have tried to make her room feel more like home with air freshners that smell like home, butterflys on her window, flowers, her favorite slippers, her favorite blanket and pillow....
Posts found: 1 to 25 of 34