lsisman
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marions thanks. Unfortunately no matter who we see they still do not seem to have any alarm to his pain. I think maybe it is some infection. I told him to call oncologist today and mention that. Something is wrong, different, getting worse over time. Surgeon’s office just called and said they will call me today to schedule a catscan and labs and get him surgeon appt after that. He would have had the tests in two weeks anyway, but seems no one is on top of what is going on. Good thing is the anxiety medicine is working and so much better than the freaking out part.
The surgeon is the Director of the Transplant Institute, he is in charge. We have been talking directly with his right hand assistant and had the Onc call as well. he was out of the country last week. We will keep bugging. This nerve block is not like an epidural (yes, loved that when I gave birth), it is more like severing all the nerves inside him so he no longer feels pain. Maybe it is the form of an epidural although that goes in your spine I thought. We shall see, only in discussions now. You know, after a while you just get tired all of all and sometimes it is more comforting and easy to accept the path and plan that is your life and just not fight anymore. God will use all this for the good and already has touched many people around my husband because of it, and through him. But fighting the cards you have been dealt, well. sometimes more contentment in folding. But the problem is that he doesn’t have any cancer showing in labs and scans so it is just battling recovery issues so there is no towel to throw in. Right now just looking for comfort from pain, ability to gain weight etc. I’m just whining. Caregiver whoas.
Always get radiation with chemo. My husband’s doctor said chemo is an enabler of radiation, but you want to do anything you can so it doesn’t return. If it does return, at least you will not feel sad that you did chemo and not radiation. Seems so many are told only chemo, no radiation, and cc comes back. Take a double wammy upfront and coast.
Gosh, my husband is taking all the pain meds and patches out of control. Total addiction and if he slacks off he goes into withdrawls and freaks out. Doc said as long as he needs pain meds, ok to take what you need and stay addicted and they will work with him to wean him off. Personally after 6 months I don’t understand why he is still in so much pain! Stomach hurts, he had part of stomach removed to do the whipple and hook up new tubes and half pancreas removed. Gallbladder removed and liver area was good. Yesterday was though the first day he said he only took 2 pain meds which means the patches he was on were working better. He switched to patches cause he hated how many pain pills he was taking. Who knows why there is still so much pain, only know that sometimes it can take up to a year to recovery from all the surgery and get things working right. All we care about now is gaining some weight!
There is an old movie called Crash, where two people are infatuated over scars and there was a line in another movie….”chicks dig scars”, so my husband says that alot when out at the pool sporting his huge scar.
Shes oncologist every month and now gastrointestinal doc. Based on peoples recoering being 6-10 or 12 months , everyone is different. Still hurts when he eats or processes good. They removed part of stomach, 1/2 of pancreas and redid all ducts. Those with liver scenarios, don’t have this same symptom I hear. We both say that if he still has pain he needs the meds, doc says that too, but we are concerned on why there is still so much pain to need meds, but doctors just say, take what you need and when you are ready to wheen on the drugs, they will help with that, so he feels better to feel pain free at this time even if it is another few months. Everyone is different and somehow my husband has always been a pain meds addict or has had intense pain with past surgeries and recovery. Not to worry, I’m not concerned about this issue, only about the blockage in the stent. He hates having additional appointments ! Thanks. I will just have to make sure we watch for symptoms. Too bad nothing would show up in labs and scans ! Thanks.
Gosh I read someplace that Hepatitis C victims can be more prone to cc and anyone who had contact working with some old green army paint…and maybe that had something to do with men in their late 60/70s. But I have googled to the bone and can’t find anything to support causes for CC. Seems it first said male and later in life, and now too many people under 50 are getting it. All the info on the internet seems older, no good statistics on how many get it today, survival rates, standard treatments. It remains all over the board which makes it very scary and less cases for doctors to treat or become familiar with. I’m going with “bad luck”. It is sucks! excuse my language. Hang in there jtoro, you just never know. I found someone on this site who has cc tumors in them for years, living for years, tumors just hanging out and not changing and so honestly, you just never know, and we all cherish success stories.
There is a lot of anger and upset that caregivers hold inside them. I may not sound optimistic but Iam realistic and there will be no surprises in my life, not after this one. Maybe I’m angry reading success stories because I’m not sure if I will have one (that my husband will survive). I’m sorry for any rudeness, anger or upset and will refrain from negative comments. Sorry ladybug. I have hope and faith but what we want may not be the plan and that needs to be ok too. Please accept my apologies ladybug.
I would like to have endless ignorance is bliss dinners. I’m a caregiver for my husband. I’m more educated in this CC area than he. I tell him what I read from here, what I find out, what questions to ask, maybe he is choosing to remain in ignorance and it will just work its way out! Or he is accepting his path and just going with it, without going nuts over what you can do, could do, get more opinions, travel to new docs, etc etc, he may just take the path that is his, here now, at 51. I’m always looking for answers, reading, thinking, what if , what if, now I’m wondering if I’m the one going crazy, making myself crazy and he is just focused on recovery and whatever else comes. aaggghhh!
32coupe, devoncat..man I was laughing. Thank goodness for some humor in all this. Well, number one, dont’ know if the stent in his pancreas is plastic or metal. need to find out, not sure about infection for yellow poop and oncologist didn’t realize he needed pancreatic enzyme on top of stomach enzyme so he has been shoveling in food, mass increases , etc and losing lbs. I’m sorry but they are all knuckleheads and have no clue about all the angles to stay on top of …so we saw our original gastrointestinal guy who knew what we needed to do. so I HATE THE MEDICAL PROFESSION ! I would love to feel really confident when seeing a doctor, but no.
Thanks everyone for your support. You know, you have moments when you just lose it and need to yell and scream and fall apart. But you can ask anyone and they will say I’m strong, tough, and I got it all covered!! I do, I just need to vent here and there and I did it above. I went to CT this weekend to bury my dad and my mom hugged me and I cried my eyes out. She said everything right, but I just needed “mommy”! It was a few days I needed badly. My husband was overjoyed when I returned, but man the house was a mess. haha Anyway, I can do it and do it all. I’m known for that strenght. I dont’ need meds to take the edge off, it just comes and goes. Problem now is he is in pain, on too many pain meds, they have to try some patch, and now he says his poop is yellowish. This would mean a bile blockage so we are actually going to gastro dr to talk to him. Oncologist is not so great for everything, just scans, labs and drugs but need different doctor regarding what is going on in side related to blockages or digestion or pain. Surgeon is swamped and didn’t see anything in pics to support a visit with him. I give credit to people who can just travel or go to other drs for opinions. We don’t have the financial support time, etc to change doctors. We had the best surgeon so now just need to work with dr on pain, scans, labs and watching forward. It has only been two months since radiation and chemo and good test results, so I dont’ think we would expect cancer back, just maybe a blockage…maybe scar tissue from radiation or soemthing. Don’t know, but the yellow poop has made us concerned.
Here is what I don’t understand. My husband had F5U too for 24/7 and radiation 5 days a week for 5 weeks. That was it. They said you wait one month after that then do labs and scans. All came back fine, so we just go back every 3 months. What I want to know is why is your husband having to go through so many chemo treatments? Why not just the first set and see how that did? Why didn’t my husband need more than one set? Everyone’s treatments and type of chemo and length of time etc are all different. It kills me. same type of cancer should be one strong documented approach. I can never understand why they are all different, by doctor, by person. My doc said 5FU is the most effective, if so, why didn’t everyone get that? My impression is that since your husband is having so many treatments, that he will need some time to stabilize himself. What I heard was the radiation works up to a month after it is done, not sure about affects of chemo in the system. I would love to say that you have to trust your doctor’s direction, but then again, I’d so disappointed in the medical profession. Only thing you can do is ask why in 3 months and not 2 or 1…
Great site. I am a caregiver to my husband with CC. I feel so much upset and not knowing what may be down the road. Sometimes I just explode and cry for hours. I hate the responsibility of taking care of work and home and family and all the bills on top of it and not knowing if, or when, he will ever feel better…….cause he hates all the things on the lists above, and I’m so exhausted from being around this situation all the time. I hate when he burps and makes this pain noise at the end like it didn’t feel good and he walks around holding his hand over his incision like his stomach hurts or he’s holding things in and he is boney and weak and 80 lbs lighter than the the totally buff man that I picked out and married and was so attracted to. He is in there somewhere but I want it all back! My relationship is hurting, I’m hurting, if this kills him one day, I’m left after a long period of upset and being drained ……up till that time. He would get to go to heaven and be released from this and I have a huge yard and pool and plants and major garage mess and young snotty whiney kids and I’m overwhelmed thinking about it every day My husband always says it is harder on the caregiver. His focus is to be optimistic, do the right things, GET BETTER, but I have to take care of everything, everybody and hold it all together. becasue someday this may be my life, alone, overwhelmed. Shoot if I can’t do it now… Sorry for this, but I’m a mess and it is so bottled up. and I just want everything back the way it was, cause even if I complained them, well, I won’t now. haaha
Lainy, I dont mean to be direct, but do they have a range of time that Teddy has left? Is it sooner than later? I know they don’t know, but your store has been devastating to me and a nightmare(CC is back and can’t be fixed) that so many people may still have to face. You were the inspiration and story tht everyone clung too and now we need to continue to look for sucess stories to carry others forward. You just never know, cause I spoke to someone who has beenliving with tumors in them for years and they don’t change, there could still be miracles happening among us. Have a great trip and I am inspired by your strength during this decision time and vision forward.
