October 8, 2010 at 9:44 pm #42647just_jillMember
I probably owe you an apology. After watching my relatives fight the good fight until they took their last breath, there was never talk of giving up by the patient and dang sure none of that from the caretakers.
My whipple surgery was on Sept 20. 08. Just passed my two year anniversary with NO sign of recurrance, and I DID NOT, undergo any Chemo nor Radiation. Something you are constantly telling people must be done. Why?
My pain after surgery lasted at most six month, but, was off pain pills at about three months. I still have some pain and uncomfort, but, this is more from my new digestive system, and is not related to cancer, and is more along the lines of an upset stomach type of pain, picture a little child saying my tummy hurts.
I certainly hope that the Dr’s can figure out why your husband is hurting so much despite having a nerve block and internal and external morphine pumps. Perhaps, its just in his head, as there is no way he is feeling anything at this point? Do you have a trusted minister or counselor that you could approach?October 8, 2010 at 8:45 pm #42646
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.October 8, 2010 at 5:45 pm #42645katjaMember
I wouldn’t have posted if it wasn’t bothering me so much, and everyone here really cares. You responded fairly positively to Just_Jill and I don’t want to provoke you, but as your husband and my dad’s situations are similar (except for the pain) I keep thinking of you.
You say you want your doctors to be negative. Doctors don’t usually think ‘positively’ they tend to be realistic. I’ve never known a doctor ‘sugar coat’ things. I wouldn’t want a doctor to look on the negative side, I’d want them to be objective. I’d want a pain specialist on board who knows what he’s talking about, who tells me exactly what is causing the pain and what he can do about it. People don’t die from pain, unless it causes a heart attack or similar. I would be reading every little thing I could find on the internet about pain. Small infected nodes shouldn’t cause pain – it’s tumours pressing on organs which cause pain. Is it from the chemical changes, from the radiation, from the surgery? Extreme pain which cannot be controlled by morphine really needs a care facility.
The reason we on this board are struggling is that all we can do is surmise, sympathise and try to suggest avenues you may not have thought of. We don’t understand your story, it scares us because we rarely have experience of uncontrollable pain. In the UK we have specialist pain teams in each hospital. My uncle who’s a doctor said ‘no one should ever have to be in pain in this day and age’. However, if the pain can only be controlled by sedation then you’re right, there is no quality of life. I feel so terribly for you and realise that you may have gone. I just hope there is something that can be done for Tad.October 8, 2010 at 2:34 pm #42644
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.October 8, 2010 at 2:23 pm #42643just_jillMemberlsisman wrote: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.
Ya know, I have tried to follow whats going on with your husband and perhaps, like others here, it just does not make sense. A morphine pump, spinal block , nothing is helping with his pain, but, yet his bloodtests are all normal. Yet, you posts indicate you wish he would just go ahead and die so you can go on with your life. This is what I read from your posts.
Most who post here are looking for support from one another. Common symptoms, prognosis, treatments, draw them together, to form a bond. I think it probably is best if you move along, as there aren’t anyone here for you to share you wish of death, for you husband, especially when, there is no diagnosis yet, of what his illness is.
Sorry to be so blunt. Perhaps it was the recent death of yet a third member of my family, Lung Cancer, who fought for two years, was never in any pain and was having an enjoyable day at the casino with his family the day before he passed on Sept 18th.
I read similar stories on this forum all the time, and do not recall a single member here posting anything close to what your saying is happening with your husband. Perhaps I too am just venting. Perhaps you just rub me the wrong way because there are members on this very forum who are fighting the good fight and have fought this fight for many years and here you are, wishing death would come to someone you supposedly love?
If I had a terminal prognosis, your posts, would make me question my family as to how they really feel about my fighting this battle. Perhaps your husband would be better served if you were to place him in a care facility, or a truly loved member of his family, and then you get get back to what you call your life. Just WOW. No sugar coating here either!October 7, 2010 at 9:34 pm #42642
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.October 7, 2010 at 9:27 pm #42641marionsModerator
Isisman….opinions are just that…opinions and they are very individual, as each case is individual. You and your husband will make decisions based on what you feel to be right for your situation. Ultimately, that is what this board is offering; support to all affected by this cancer. I wish for your husband to have relief from the pain he has been enduring for the last few months. Things have been tough for you and your family and I hope for better days to come.
MarionOctober 7, 2010 at 9:07 pm #42640jennifersMember
Don’t apologize – people are entitled to their own opinions and feelings, and you have as much a right to vent about them as anyone else does… people aren’t always going to agree with what you have to say, but it doesn’t make what you have to say any less valid.
I hope you and your husband can find peace in whatever decision you make, and his pain can be controlled…
JenOctober 7, 2010 at 9:02 pm #42639
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.October 7, 2010 at 8:10 pm #42638marionsModerator
Isisman…..Do you have the medical records? If not, then I would highly recommend you to acquire copies of all including, blood test, doctor’s notes, etc. I would forward everything to another center very familiar with this cancer. Is the pain related to the abscess in the esophagus or, has something new developed? Either way, I believe that you need another opinion. Let us know how we can help.
MarionOctober 7, 2010 at 7:41 pm #4133
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.
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