You are not logged in. Please login or register.
La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Search options (Page 1 of 4)
Posts found: 1 to 25 of 93
Make sure she takes a scoop of metamucil or something every day to help with constipation. My husband was told another kind to take but can't remember the name, either way, once you are on morphine, you need to take something daily to keep the system working.
My husband wanted his ashes sprinkled around the back yard, his favorite place and it is cold/winter and he is still "in my bedroom" I kind of find it hard to part with im now, no fancy urn , as I was not supposed to keep him. I think me and the girls will hold on to him till the Spring. Sounds eerie but I just know he is there in my room in some form and it is comforting. Well, maybe there will be a warm weekend yet to come. The kids forgot about him in my room. Lainy, I'm glad everything is going so well for you. I didn't think about the cologn thing as I need to let go and not live in so much pain, but my 10 year old seems to have snuck in and sleeps with me here and there and hate to say it but I love the company but I gotta get her back in her room, as I don't believe in kids taking over the parents room. Have a great service!
Lainy it makes me ill too. You remember my husband has the worse unmanageble pain from this cc and was at an 8-9 every day for three months and went through nerve blocks and two morphone pumps and they were trying everything. we had no hospice facilities so they could visit the house. The would PLAN to stop by every two days, if you called cause you needed help or answers , she may say she'd stop by and hours woudl go by HOURS. no call. I would have to call and ask when she was coming. I would almost tell her what i needed, pads for bedsores (oh and dont' worry, I;ll get someone to help me apply them) and sponge swabs to keep mouth moist..got bags of those delivered eventually. Overall, I was hospice to my husband every minute. I also said since he couldn't communicate can we up the dose on morphien to make him more comfortable cause he can't push all his bolus buttons, I had to do it every 15 minutes for one and every 3 hours on the other one. Shoot he wasn't gonna get up anymore, catheter was in, too weak. Might as well let him feel nothing right? Well they too said they can't do that unless he needs it . HELLO HE has like two days left !!! Lainy, the only thing I hold on to is that he died at home in great care, with me. After these stories, I am glad they didnt' have a facility. I know now what to share with others on how care SHOULD be. The morphine pump company and the in home nursing care seemed better than hospice. I am still suffering memories of Tad's last days and can't get them out of my head. Someday I hope only to see him as we were and as he was before the cancer, cause it is so painful now for me. I wish you a special funeral day. One thing I learned that has worked for me on big issues that take over your mind, is pray to God and ask for memory healing for those hospice bad feelings and maybe you will wake up one morning and the weight will be lifted. Worth a shot.
My husband's tummy got really large over a few days. Turns out he was filing up with urine. They put a catheter in him and it all drained and he was back to normal. No idea if this related. He was with Hospice when this happened. To be honest, I told them about it and they knew what to do. Prior to hospice, it was not so large that we were alarmed to tell the doc.
I'm sad because in my state there is no 24/7 hospice care. they come in for work requests/orders and leave. No facilities. I had no choice but to be HOSPICE myself, Granted my husband never had better care or company! We took turns holding his hand, turning his positions, sit up, side of bed, back in bed, on side. Long hard days but he was never alone until he sunk into that deep sleep till he passed. I wish I felt I could brag about Hospice as you all do, but I do agree spending the last week to the last second with my husband, although very intense and scary for my kids, he was suffering greatly and it was so hard but at least we were all together in the end. I would have been very upset if he died in a facility and I wasn't there. God bless you all. I most likely will not be back on line again.
to KevinKY - you are so lucky you had a hospice facility option. In MS and TN there are no hospice facilities, you have no choice but to die at home. It is awful, horrifying to the children and the vision of the end stays in your head forever. Only if the patient has a medical issue that puts them in the hospital can they have hospice attend to them and they may pass there. Hospice came in only for things I needed, oxygen delivery, catheter insertion, bedsore adhesive pads. They stayed no more than the time they needed and were gone. Honestly there was nothing for them to do. They came at the end, to do paperwork and await the funeral service car to come for pickup. I was not sure if I wanted to drive to a facility, if there was one, to visit and what if I missed his last breath, and I didnt' ahve the kids with me. the schedule would have been intense, in the end, we were able to sit with him every hour and help him adjust his postion, they don't have someone sit by your bed 24 hours in any facility I know. He got intense attention and love, but yes, it was awful to see . I can't say too much about Hospice, I felt I was Hospice! I just wish everyone the best help they can get.
Unfortunatley sharing the burden does not help or make me feel better. It is my loss and I will be me in my house raising kids alone. No escape and no options. I'm sorry .... It has been interesting to read how many people this cancer hits through this site, but nothing comforts the pain as it can't be shared, it is for me and my family to live with and live through. I pray that so many that get this, LIVE and have success beating this thing, I pray that some research in the future can detect this ugly thing early, but for those that are unfortuantley, my heart goes out to each one of you as it has been a awful painful upsetting experience for me as a caregiver and now a widow at 48. This experience has been awful for my kids and my worst struggles are yet to come working full time and raising kids with no family or friends that can help. God bless everyone, and thanks for this site and letting people know THEY ARE NOT ALONE.
Tad died yesterday morning. Having someone suffer and die in your home is the worst experience. It was horrific for my kids to watch and toward the end, he went into a sleep type coma, mouth open, eyes open rolled back, gasping for air for days. Finally after 4 days he passed, I was holding his hand alone with him, by chance, so that was a personal moment. All we can remember is this last week and how he looked and we can't get any other memory or vision in our head. Tad was diagnosed last Dec 24th, had a whipple in Jan and treatment just didn't work in the long run. It was a awful last few months but we are all glad it is over. Good luck for all of you dealing with this ugly cancer and for those having in care-giving roles.
Wow Pam/cherbourg, you are absolutely right. This is an angle to the monster that no one is experiencing and my husband and I honestly believe we are in good hands and they are trying everything. How many people on here have an external morphine pump AND an implanted morphine pump plus had a nerve block. And on top of that have all normal labs but show nodes infected with cancer. I cna't find anyone. Therefore maybe in the future there will be someone else similar and I will be the one to be their shoulder. Right now we are shifting off the external pump as it messed with your mind and we are increasing the pump hooked to his spinal fluid. I even heard some people drive with the implanted one which made me feel maybe he will get his mind back when we get off the external pump that goes into his port . It is a long process to gradually shift, you have to avoid withdrawl from one and at the same time keep the levels working on pain mgmt. Today we drop the external pump down a notch, and he is paranoid but I made the doctor increase the implanted one which we call "the hockey puck" and make it provide additional Bolus' every 3 hours not 4. We also need to increase his xanax. His worst nightmare, worse than pain at 10, is having an anxiety attack!! My story is differnt, I am different, my view of how this affects my family and relationship and life is different, I may be more selfish than others and just overall unhappy, but we are working a plan and don't know how it will end up. Thansk again, for your kind words and support!!!!
I will talk to the oncologist today about what next to pursue. But you know what, my husband is not interested in other opinions. He likes who is helping him and he almost is content if it can't be helped here, that is his path. He wont' travel and hates any appointment more than an hour long. His 1 mile walk at night takes like an hour, he walks so slow, it is hard to want to go with him except I keep him from falling in a sideroad ditch when he loses his balance. I apprecaite all your suport , from everyone, but how we choose to handle this will be between us and our doctor. I think next time I post, I will only do it when there is something positive.
Actuallywe are an old couple, not young, married 20 years and I am not the slightest bit upset or scared. You can ask anyone who knows me. They even said they know if he died tomorrow, I would just handle it and go on cause my dad raised me to to be self sufficient etc etc and to persevere. I will admit that I have not been as happy in my marriage over the last few years so when this happened, I think I was less upset. I just take things as they come. I have no interest in a counselor. My husband has one to help him wiht his stuggles and to stay optimistic. I have to work and take care of kids and pets and home and I have enough on my plate. I have lots of people helping with my husband each day so I am not overloaded. It actually is working out well. I hate seeing him sickly and weak and boney and hurting but whatever happens we will both be fine. As my husband says, it is in God's hands and he is a major christain!
he does it for exercise and he is weak. The doctor we have now will not be offended if I suggest other opinions. But the last oncologist we saw did cop an attitude when we told him we were switching oncologists to one the surgeon suggested and the one he sends all his cc patients to. Things will be ok. But honestly, all his labs are normal. For all the other cc folks they have labs with other results show up. My husband's only inclination of cancer is a catscan. Who knows why his labs are normal when we know he has cancer activity!!?? He is a bizarre case but we are comfortable with the services we are recieving. Everythign will be fine.
We are very comfortable and confident with my doctor, and I am going to ask him if we should send all tests to mayo or someplace else to get some insight. I know that may step on his toes but he would have to get the package together even if I requested it. My husband can't travel anyplace so we are sort of stuck here. he is also so confident with his docs that he beleives the plan is betteen God and the docs, what it is, it will be. I wll talk to doc on Wed and push the envelop a little, but trust me. The last oncologist we saw wasn't even half as proactive as this one is and this one is the one that gets all the people like my husband so he is most experienced. Just baffled as well, but we shall see.
unfortunately I grew up with Mr Whipple as well. haha and you are right. There is no way to not think about him everytime you here whipple !!! I'm 48.
Thanks. Tad had one of his more lucid days yesterday, he made calls, watered his plants etc etc. Went for a two mile walk even. we are feeling that as we turn up the implanted morphine pump and turn down the other, that just maybe it may work and he may find some relief. No idea why yesterday was different. the deal is everyone is a different case, no two alike. I read about people with multiple surgeries and clogged stents and bile leaks (eeewww) and multiple hopsital visits. My husband was in for his whipple 6 days never had any complications....all we have been dealing with is pain mgmt and in the big picture that is one thing. True he may be a very individual case next to so many others, but who knows if someone won't pop on here and have a scenario where they can't manage their pain, then I become the one to help them, share, etc. If someone hasn't suffered this much then they certainly are not a good judge to say throwing in the towel seems like a good option. If my husband wants to do that, I support it. I don't believe anyone should stay around for the sake of someone else/others...what an awful life. I want my husband to have peace no matter what the choice, unfortunately as I said nothing is killing him right now, nor close, so we just have to continue to ease his pain while we figure out what the hell is going on with him. thanks for everyones thoughts and prayers but we are gonna be just fine.
He is no where near death. Just dealing with the pain. He is a man of God, stephen Minister Deacon, and connected with the Caring Ministry in a church of 7,000 members. He can talk, and walk, we actually walk about a mile or so every night for exercise, and he enjoys a cigar every day. He says bizare things from the morphine but the nerve block cleared his head. If you touch his stomach he winces and now it is worse with the new pain pump implanted in that mess. He is looking forward to the pearly gates and know that I can manage the kids. His look on dying is about no more suffering. It has been so long and he is such a bizarre case. Everything will work out, we are just impatient. I'm so glad about your survival. I have read too many cases on this sight where people were told after surgery, to get the chemo even if they are told no, because the cancer has come back and they wished they did chemo. I have a close friend who just experienced the same thing, They said he was fine, no chemo necessary and now the cancer is back even worse and he is getting chemo. he trusted his doctors but now told me he should have listened to someone who has heard it said so much. Anyway, you seem to be an incredibly lucky person. Since my husband nodes were infected he needed chemo and radiation and with the cancer gone for 3 months we were happy, but then it did come back and we expected that but not so soon. And since it was so soon, it has just been an ugly spiral. Anyway, we will be fine. Have a great life.
Thank you. We have pain specialists on board and they honestly are giving this every shot they can and honestly, labs are good, scans don't show much, it is bizarre and maybe my husband is the rare frustrating case that is so new and rare and boggle them. After all this is not a good cancer and has awful results for so many. We suffer from suffering for too long. Endless , exhausted and spent all our days and hours in doctors offices and other facilities and hospitals. We are very happy with all our doctors and facilities, but again, no two people are alike but someday there may be someone else with this who have the same aweful situation and I will be the one case that can truly share with that person! Thanks for your support but becasue he is so differnt from so many others in his suffering, it just seems like I do need to keep this all off the board. Our situation is a situation of wanting it to end if it is going to continue with no end. Does that make sense? Helping him to live extra months in this shape is not how he wants to live. I agree with him but nothing is killing him right now. I dont' see anyone on here with internal and external morphine pumps and nerve blocks that cleared their head but did nothing for the pain. My husband has always been a medical disaster...always something. But a million people including myself love him terribly and all this is so upsetting. I agree I dont' want my doctor to talk negatively but I want all the facts even to my hard questions, and yes optimism is important but I still need the facts . His blood pressure has been 77/43 for quite some time even if they pump him with fluids , supposedly the internal pump in spine can affect this, but it has not made him more dizzy or less. Still a scary number. Anyway, I'm just on an interesting path and we are all drained and it never gets better so I am sorry to drag others down. So far drugging him is the way of comfort and I'm sorry but it makes it worse for everyone on top of it.
My husband is the air that I breahe. My chest feels crushed if I think he will die but he is miserable and he doesnt' want to go another day and there is nothing we can do about that. yes nothing has worked and he seems to be an extreme case but there is a lot of love shared when you both agree that it is just too much and too much suffering. He only wants me to take care of him every day, every second and I cant'. I think no one has been in this scenario to know who awful it really is right now and there is nothing we can do but continue to ease his pain which makes him in just a drug induced state that agian, no quality of life and needs constant care. yes people are fighting to live but since he is so bad, you just dont' have it to fight. BUT the cancer isn't killing him just the pain of it. You are right, I need to stay off this board becuase there are so many people "living" and working through this and my husband's case is far worse than anyone I have read.
Thankyou. I'm strong and people are amazed at everything I'm doing every day on top of this and never missing a beat, even with out sleep. I think I just was not so happy before all this so now I just want it all to go away as now I'm really unhappy. Yes it is selfish and I'm not suffering the way he is, but it have been going on for so long as we have all learned this cancer affects everyone diffferntly and no two cases are the same. I am going to ask the doc some tough questions next week but honestly, they are optimistic and really don't want to talk negative and to be honest, they need to have that approach. thanks.
No his esophogus issues was never an issue. They "found" it and treated it but he never knew he had it nor experienced any "better feeling" after it was treated. Also, we like our doctors and treatment facilities, there is nothing wrong with throwing in the towel as sometimes prolonging survival when the end comes anyway, is grueling! We have no interest to get another opinion and find it crazy in seeing what people go through just to add one more year. My husband is in really bad shape and it would be a miracle to get him to survive this. There is more comfort in not driving yourslef crazy with more appointments and he does not want to travel. Besides all his labs show normal results and more than one opinion confirmed this, only cancer in tiny infected nodes shows on the scan. I think i was just venting, but I realize now that as soon a you vent, everyone wants to offer you advice and in most cases it is always "you should get another opinion". I'm tired of all of this, I'm sick of it actually, I dont' want to add appointments and mailings and all new conversations to my already hectic days and weeks. Yes I sound stubborn and selfish but I have no quality of life now either and I don't like seeing him suffer. I know this is not the opinion of everyone else on this website, but I say things as I feel them and I don't sugar coat anything. My husband respects that part of me and he is the same way...guess he taught me well. Anyway, thanks for your interest, but we are fine. I think I need to stay off this site. It makes me very defensive, sorry.
My husband, 52, has an external Morphine pump AND now an implanted morphine pump but the process to try to switch it over is long and slow. He is always in pain and nerve block didn't work and even this morphine straight to the spinal fluid isn't working. He looks like awalking skeletin with deep eye sockets. When he falls asleep every minute, his eyes are 1/2 open and eerie looking. His blood pressure was like 77/48 or something and low bloodcount, couldn't do chemo this week and had to go to hospital for a 6 hour process to get 2 units of blood put in. Every day there are appoitnments and things to do. I need to ask oncologist if the pain and symptoms will be any worse if we just stop it all ! He was 230 and is now 143. If it is going to go on and on and never get better, than why go through all this. I know docs really don't know about expiration dates butthinking about more months of this is upsetting.
You can only have radiation once. Unless there are tumors in OTHER places, then you may be able to have radiation in a new spot. Chemo can leave scarring but it is the only way to really kill this stuff as chemo is an enabler to radiation and many times chemo loses its effectiveness.
yes my husband's weight loss is astronomical though, devastating and yes I have heard it could be a year for pain to get better, but a person can't live a year in pain, so we went for drastic measures to get rid of it...thus this new pump implanted. Toomuch pain puts your body in trauma. Docs have tried lots of things, so it is not their fault it is just a mess. It is the cancer, a bad thing, differnt for everyone, and differnt treatmetns also work for different people...or don't work. hope things get better for your dad.
Doctors have always listened and acted. Surgery was Jan 4th so the pain is from cancer in general. And it has been unmanageable no mater what we try or they try, so this was another attempt to work on it.
Well my husband has been on an external pain in the butt morphine pump for months. It is not working well (as his pain remains 5-9 all day)and the morphine makes him hallucinate all day and I have to have someone stay with him. It is an awful mess. So they implanted a morphine pump in his abdomin, under the skin, looks like a hockey puck !!! and it attaches into spinal fluid with some tube. Anyway, over the next month or two they will decrease the external morphine and increase the internal pump so he doens't get any withdrawls and then he will be able to shower and all and not carry anything around (the new pump works with this little wireless device the size of a car door unlock key chain thing). Anyway, the inside pump can hold up to 6 months of morphine and the external pump , less concentrated, is replaced every week. You get addicted to the pump in your veins, but don't get addicted to the one into your spine, It also doesn't mess up your head or take your appetite away. So we are looking forward to this switch over !! Just wanted to share since I haven't read about anyone with this. Maybe my husband is in more pain than everyone and has lost 90 lbs which is huge etc etc. Anyway..oh, we also get his labs and they come back like a perfectly normal person. The only way they can see the cancer is infected nodes in the catscan. Bizarro as so many people on this sight pay attention to labs. Anyway, I am hoping in another month, my husband pain is finally being managed after so many months of misery.
Posts found: 1 to 25 of 93