Yikes, is there a light at the end of this tunnel, ever?
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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!!!!
Isisman,
I’ve been following this thread with interest. The only point I want to make is that the reason this board IS so helpful to so many is that everyone can be completely honest about their feelings, their rants, their journey and their situations.
I am so moved you were comfortable enough to share your situation with us. I’ve walked in your shoes during my Mom’s journey with this disease and I work in the medical field and see patients every day with intractable pain. There are never easy answers NOR global ones. You have raised a puzzling aspect to another face of this monster of a disease.
I hope you will continue your honesty with us and not feel you have to only post the positive.
I’m sending hugs and continuing prayers….
PamI 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.
Isisman,
I just have to vent myself here. Although my heart sincerely goes out to you and your husband, I can’t help but feel resentment in your posts. You say you love your husband so much and want him not to suffer, but yet maybe the one thing that could help make him better, you don’t even consider. Wouldn’t it be terrible if you found out that he was suffering from something yet undetected that was easily correctible? I have a relative that has fibro-myalgia that is not being controlled with pain meds, and she suffers each day. No, not in the extreme pain that your husband is in, but she doesn’t give up and has sought many other opinions.
It just doesn’t add up that most things seem to be checking out ok except for the nodes, and the extreme pain. That is why so many people on this board are trying to help you with their opinions….and most to get second or third opinions. They feel for you as do I, and the pain you both are going through. If this was happening to me or a member of my family, I would feel my doctors don’t really know what’s going on, and find someone who might have a window into the problem.
You say your husband can’t travel, but he seems to be doing little things around the home, and walking 2 miles a day! I can’t even do that! And what’s to say that you would have to travel a great distance? His pain is making his blood pressure go out of whack, but it will not kill him. Something else will, but it may take quite some time. I hear that you want his pain to stop, but in getting another opinion, isn’t there a chance of that?
I wish you all the best, and do hope you both get comfort soon in all that you are working on.
Linda
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!
Isisman, you seem scared to me and that is very understandable. This cancer is a roller coaster. We ALL wish the best for our loved ones battling this cancer. I know with my dad it has been intense since May. Some times he needs extra pain medication other times he is fine. I think it is outstanding that he can exercise and walk. You seem like a young couple busy raising kids. My best advice to you is to possibly concentrate less on his illness. That may make you upset, but it is important for him to feel some normalcy. Have you thought about counseling to get you and your husband through these hurdles? Your life is not easy, by far. I understand your struggles. My husband lives six hours away and we are sacrificing our marriage at the moment so I can be my dad’s caregiver.
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.
Just my opinion, but if a doctor feels his toes are stepped on because you seek another opinion, I’d question his ego.
I think it’s amazing your husband can walk 1 or 2 miles a day considering his ongoing pain and that he has lost 80 pounds! I think I’m doing great but my energy level has gone down greatly.
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.
Issisman,
I think the problem people here are having is understanding why your husband is in so much pain. My husband has been dealing with this for four plus years now and the only time he had pain was when he had a drain that was obviously resting on a nerve. You really don’t hear about people in pain unless they have a tumor causing it. Your husband’s case is really very strange and personally it makes me think maybe he should go to some new Drs., but I know you and a lot of others are against changing Drs. My husband and I have no problem going to new Docs if we think they can have a new perspective on a situation. We may be doing that ourselves soon even though we are very comfortable with everyone we deal with now- we just feel they may be out of ideas. Your husband’s case seems like one on the show “Mystery Diagnosis”. I have to say that show sometimes gets on my nerves because I can’t believe people put themselves and sometimes their children through so much agony , believing Drs. when they tell them that nothing is wrong until they finally find one that figures it out. I really wish someone could give you some answers. I honestly have seen too many people on here and in my family put up with less than adequate care that causes them a lot of agony and eventually death. Each to his own obviously but for your husband’s and your sake I don’t think I would just assume there’s nothing else to do. It really doesn’t make sense. Maryunfortunately 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.
Nicely said. I am sure down the line someone will need some more pain advise and you have graduated from Pain 101. A school none of us wish to be at. Let’s hope for some more lucid days from Tad. Guess I forgot that Tad had a Whipple, that’s what Teddy had also. Tad got out of the hospital in record time, good for him as that was a plus. I’m sorry but my sense of humor reminds me that everytime I hear “Whipple” I think of Mr. Whipple saying, “don’t squeeze the Charmin”. Oops. You may be too young to remember him.
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.
Dear Isisman, My heart just aches for what you and your husband have had to endure. I feel so much frustration, anger and sadness in your posts, I cannot even begin to imagine feeling that way and then having to contend with all that you do contend with. You have good reason to feel upset that no one can find an
answer for that kind of pain. Most of us could not put up with that and the hard part is watching someone you love suffer so. I watch Teddy all day and while his pain is under control it just tugs at me that he is “dwindling”. As for posting here you need to do what you are most comfortable with, only you know how you feel. Praying that things turn around for you and yours and that you can all reach some kind of answer to relieve you of this burden.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.
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