lsisman
Forum Replies Created
-
Posts
-
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.
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.
mhelton, all i can say is if they don’t find cancer in your nodes and even if they say they have clear margins, REQUEST CHEMO. I have read so many posts and many people who didn’t need chemo, got cancer back. So Chemo is your insurance policy to knock out any bad cells that are not detected at surgery time. If you see an oncologist that won’t give you chemo in this sceanrio, find another one that will. That is my suggestion from all I have read from people. My husband had a whipple, had nodes infected, got treatments (radiation and chemo) and he was good for 3 months but then he had nodes infected again, It has been a battle to manage this and all his labs come back perfect like someoen normal so the only thing that tells us he has cancer is what is seen in the catscans!! How frustrating is that!!! So we have to wait 3 months to just find out good or bad news. This darn cancer is differnt for everyoen and so is the treatment process. Stay positive! We had a great surgeon for the whipple, he is head of the transplant institute in Memphis, he recommended our oncologist so we knew we were going to a doc that got the most cases like ours. We are comfortable with this plan and never felt like we needed a second opinion. You need to be comfortable but I will say that we started with an oncologist of our choice, a Christian one, then switched to the one the surgeon recommened and there was a huge difference in care and attention. If you can find an oncologist who has had more patients sent to them for this cancer or cancers in pancreas and liver etc, then they should be your best doctor choice.
Thanks. I can ask the doctor anything when I am with my husband. I don’t need anyone else with me. I am never seen as upset, nor get upset. I’m just frustrated and tired of all this and want it to stop. I strongly trust the oncologist and he is trying everything. Next we get consult for this morphine spine stimulus deal. They want to relieve his pain while working on the initial cc situation, I just believe every one is different and we just know that what works for one, doesn’t always work for another. I have the Home Health nursing program coming to the house now, the other side of their business is hospice which does visitation and work orders for meds etc. The nurses will come to do his morphine pump stuff, unhook him once a week or a shave and a shower, and replace his bag when empty or any other pump issues. I can ask Doc on Wed, we go weekly, to see if Hospice side may have some ideas for pain relief. yes, they still need a work order to come over. I am optimistic about the pain procedure next as a small does of morphine is supposed to work wonders and not affect your brain (no looney), but I have been told I have to make sure there is a local company that will “service” it like refill it and monitor it. I heard that support is not common. I can’t image a doc doing a procedure and not having the resources to provdie to support it !!! Anyway, we just keep working through things to try. Not sure if we have many more options. Thanks for your support, kind words and to all the people that understand.
Lainy, I still cant’ read these posts from you. You were my success story and inspiration. My husband is now in so much pain, nerve block didnt’ work, can’t reduce morphine pump, every day is miserable and morphine makes him loony, painful to eat still, cancer not showing as anything but infected nodes that chemo is shrkinking. he is miserable, I am miserable he is withering away from 230 now to 143. Al bones weak. I have to find someone every day I got to work to come stay with him. I assume insurance pays for hospice facilities like a hospital, cause I am broke! He is not hospice ready but both of us just want it to end, He said he cant’ continue on this miserable with it never getting better. yet docs say his cancer cells are being managed well with chemo, but still, he is a wreck. I dont’ know what I will do if I need someone here 24/7. I have had peolple come stay weeks at a time to help, but now down to only finding someone 11-3 every day at the most. Which is ok, right now, in his state, but if we go back to the worse state he was in last month, I want it over. I can’t do it. I’m so miserable.
My husband had whipple surgery, he was in good shape for it, he was ok for a month or two after then went downhill ever since. They can’t manage his pain nor figure out why he is in so much pain, did nerve block and it didn’t work, now they are talking about some spinal implant. He looks in bad shape, drugged for pain, every day is awful and we all can’t take it anymore. I pray that you and so many others do not fall into the scenario my husband is in. It is brutal and draining and a long road…to what? or when? Stay positive and optimistic please! So far after all I have read, I just don’t see any case as ugly has what my husband is living through and he doesn’t want to live anymore but is not even close to it getting him!
As a caregiven, cleaning takes so long and you never seem to get any downtime. I may pick up and do 10 minute tidy but clean…ugghh. Lainey, I can’t believe this is coming down to all this. Someone needs to live through this ugliness, there just are not enough good stories and successes. It makes me feel very depressed. My husband is going downhilll every day,, week and he doesn’t even have anything going on except some infected nodes and all labs are normal. His pain is a 10 on 16 mg of morphine an hour !!! aaaggghhhH!
My husband was supposed to be knocked out, intravenously, but when he had the temp nerve block he said it was extremely painful!
We shall see. A very bad fungus growning for months in his pipes has been his pain, they say. Not sure it is node issues, so in 10 days he may be a new person after all the drugs fix it. Still signed up for nerve block what the hell. bring it all on!
Turns out that chemo can cause this fungus but it normally surfaces through sores in your mouth. So the jerks never considered it when his pain increased. Pisses me off! So it festered for months into raw ulcery lining in his pipes and trying to push food through them. Now they said it was so bad that they have to keep him very drugged. Last night he was hallucinating, thought he was in a fraternity house and wanted to know what I was gonna do with all the guitars. He hears voices and it is like he is on some drug induced fantasy ride. Frustrating for those of us visiting but we have to keep telling him not to worry about it , and he will get better soon. Doc said to deal with this cause they have to keep him that medicated. Oh well. he is better in the mornings and antibiotics have been going in for 4 days now, need to go in 10 days. he had a shower too so that made him feel better.
The saga continues. Last night he was so dopey and drugged that he couldn’t put a sentence together. Not 3 works without drifing off and forgetting he was even saying anything. he would reach for a drink in slow motion and start to twist cap off and fall asleep. OMG I could not communicate with him, he was NOT THERE !!! I told the nurses he is so damed drugged he can’t even talk. I told them to reduce his xanax to .50 3xday from .75 3xday. They agreed. I tired to tell Tad and he couldn’t comprehend. Then kept calling me after I left to say something is going on , they are changing things, we need to figure this out. It was like he had lost his mind. Well I got them to decrease xanax a little to help but Doc said he is very very sick and all drugs have unfortunatley taken over his mind and we just have to hang in there. Doc asked who is best friend was and called him and personally told him to visit often and that Tad needs it. Company frequently, then he will nap in between and not think so much. Then I had a sick kid to take to doctor, and one to school, then leave one home in bed, go to work, figure out who can visit Tad off and on when I can’t, etc etc. Gotta jog at lunch, can’t get enough work done and boss NEEDS to see accomplishments, then back to hospital then home to kids and homework. One day at a time, I just go through the moves and don’t harp on thinking about it and I get through it, but if I sit back and just take in the whole picture and the business, I get very upset and emotional and fall apart. So, one day at a time and just move through the schedule!!! Good thing I am a workhorse and a strong , multitasker.
