::sigh::: so many questions. I thought I handled myself pretty well with my overnight stay for the PEG and scope. My husband tells me three days after that I had called him at 9:30pm after surgery all paranoid and dellusional. I guess I thought "They" were after me. Seriously though, I had a restless night and don't remember sleeping at all much. Plenty of pain and alot of "let me give you some more morphine" After using the search engine, I realize I'm not alone with poor reactions to morphine, but it brought back some memories of a car accident I had 20 odd years ago and had bad reactions to morphine. Maybe I'm not the morphine type.

Hell, I don't remember much. I remember trying to concentrate on the faces of people. Don't remember conversations. Pain was still very much there, but the stuff just made me flat out loopy.

Would it be wise to just tell the treatment center. "Do not talk to her if she's on morphine" or do the medical folks realize you are all doped up and not with your right wits?

This is more than likely not my first surgery, as there is mention of a neck dissection after the rad/chemo thing. I just don't like being a goofball. My husband kept asking me if I had any memory of some of my stuff, and I flatly do not. I was impressed (as he was) that I was able to plug the phone in and make a call. I guess I can be highly functioning, AND dellusional, paranoid at the same time.

Would my best bet be to just tell them to put a note in my file that I had this type of reaction? I'm sure they pretty much give everybody morphine as a standard practice, and if they must give it to me, I'd like it in my file somewhere that I will remember nothing, react strangely and sleep in little short fits.

I'm fine now, and recovering. It just shames me greatly if I have no memory or control of my faculties. I hate being the clown. Here I thought I did good. Despite the pain I got myself up and to the bathroom alone, but based on what my husband told me about the phone call, I'm thinking they need an elephant gun to shoot me in the butt and put me down for a few hours.

Jen

Jen,

Docs and nurses have seen it all before. They won't judge you if you're whacked out on painkillers. And, if they don't want you up and around, they will tie you down. No kidding.

You can ask the docs to try something else if morphine gives you a bad reaction, especially if it doesn't handle the pain. I've had six surgeries and never felt any pain, so whatever they used on me worked.

You sound pretty typical to me: memory loss, strange reactions, sleeping in little chunks. Two of my operations were "major," my definition -- 4 hours or more. I had the same reaction both times.

Ken

Hi Jen; I hope you will tell your Docs how you are reacting to the morphine. It makes me very nauseated so I take a pass on that drug as well.
There is a large arsenal of narcotic and non-narcotic analgesics that can be used to help you with pain. Don't hold back on communicating with the folks who can remedy your immediate problem. I believe that it is difficult to feel the way you do on morphine. Ask for a change in meds..it's your body.
What others think of you (delusional etc) isn't something you have to fret about right now..forward motion through your treatment, and on to recovery...that's the goal we all seek.
Bless you as you start this journey; your fiesty resilient attitude will serve you well..Bravo
All the best,
Fran

Thanks. I wasn't nauseous, just freaked out of my ever lovin' gourd and still in pain. I had a nice buzz going on, but it wasn't enjoyable because I still had lots of pain. I realize this isn't the norm. But you know, I barely remember the hours of consciousness after surgery, so they probably were putting morophine in me. Once you get to the point you are looped out of your head it's hard to COMMUNICATE. In my paranoid state, I guess I kept to myself as to not attract attention to myself. Knew I wasn't quite right. Everytime the nurse suggested more morphine, I remember telling them, let me get up and go to the bathroom first (painful in itself, but knew somehow if they gave me another dose I wouldn't make it around the corner.)I'd lay back, enjoy the buzz, but wonder why it wasn't doing much for the pain

Next surgery, I'm going to have a steno pad prepared with please write down your name so I can remember it,if it's a medical visit, write down what you did and told me so I can remember it, post surgery instructions? please bullet the important things I need to remember. Jot down notes for me to remember. I'll have to tell my husband to take the steno pad out for me.

Gawds. This is one of the reasons I never enjoyed alcohol much. I hated the loss of control and memory. Thing is, I remember some of my lucid moments and they were whacky. No sleep, can't concentrate on the TV and watching the clock tick very loudly watching time pass.

I remember the radiation onco telling me they'd do everything possible for me for pain. I was a skeptic. After birthing three babies and having plenty of painful other past experiences including a crushed femur, I just nod my head because I know pain is part of this and I've born enough of it already. I don't expect to be "painfree"... lol. Not into the bitching and whining about it, but just getting on with what needs to be done. It's probably why I didn't tell them how much pain I really was in, because I fully expect staff to tell me "Well, pain is to be expected"

Guess if I was given the choice of morphine or pain and in my right wits, I'd choose to forgo the morphine in the future. This time, I probably was already getting it before I could figure out that my head was fried. Then all I could do was nod my head and plod along like the clown that I was. Thing is, for all appearances, my husband thought I was "normal" (except for the strange paranoid phone call) He keeps asking me do I remember this and do I remember that? or conversations that we had. All a blur. Yeah I probably looked self contained and dealing well, but man, my wits weren't with me. Me needs my wits!

Jen

Hi Jen,

While recovering from surgery (total glossectomy, right and left neck dissection), I, too, was given morphine and now know in the future (if it's ever needed again) to ask them for a different drug. I honestly don't remember a thing except that I felt like "someone" was after me! I later found out from one of the nurses that I actually attacked her! Yup - kicked her right in the stomach and she had trouble trying to restrain me! Mind you, I am not even 5 feet tall and at the time weighed only about 75/80 pounds. The nurse said she couldn't believe the amount of strength I mustered up being on that stuff. So for me, no thanks, I'll ask for something different if there's ever a next time from what I know now.

Good luck and keep looking up!

Hugs, Nancy

Hi Nancy,
Your post reminded me of my craziness in the hospital while on morphine. Oh my gosh, I was totally paranoid (thought everyone was out to get me), gave my nurses the worse time (got up and would not get back in bed til they changed all bedding), talked crazy to my husband (kept insisting people were there and talking bad about me), I was nuts! But apparently, the doctors and nurses were used to this type of reaction. Once I came home, my husband fixed my little morphine cocktails and I was much, much better with it in small doses. WOW! Hope I didn't share tooo much!!Sorry! Love, Carol

In my opinion, this is where the care giver (spouse, friend, relative etc.) being with you, becomes important. There are many options for pain management. If the one they try changes your behavior too much, the care giver is the first one to notice. They should make the medical staff aware of the problem and suggest (insist on) a change of medication. I have several close-to-home stories about morphine. Two of them ended very badly. The third was resolved quickly by changing the type of medication.

I do NOT believe we should have to suffer mind alteration as a part of the body alteration that cancer treatments bring. This is true even if you don't "remember" being wacked out.

This subject, being part of a PEG installation makes me happy I did not have one.

Can't thank you guys enough for sharing. I did previous searches in this forum on the subject of morphine, and I think that if I don't bring it up to the care team, I'm liable to go thru this again when I come up for the neck dissection.

My problem, is that my spouse already considers me a bit nutty in a good way. It's hard to explain that one, but I have a rather wild dark sense of humor and say freaky things even when quite lucid. He's never seen me on this sort of drug before, and I had long since forgotten my experience on it at age 20 when they dosed me good for a month on morphine while in traction for the crushed femur. This whole episode brings up bad memories from my youth that I had long since forgotten.

The problem was communication. Last night(and my kids thought this was a hoot because they consider me somewhat nutty too) we were discussing this over dinner in the restaurant. I explained what I could remember... the night nurse who from my whacked out perspective seemed to be quite bossy and had an attitude problem. When she came in and bitched me out for being on the laptop, I guess I must have figured that they were "all out to get me". Incredibly pain, lack of being able to sleep, and being whacked out of my head didn't help much. When under the influence of that particular class of drugs (I remember I sometimes have bad reactions to demerol too from the old days) I get into the "flight or fight" response. Guess this time I chose "flight" because I sort of hid in the room trying to avoid the nurse that annoyed me so much, got real paranoid yet it still amazes me that I was able to plug in the phone and remember my home number. Fully functional but not in my right brain.

The kids were laughing last night because I was explaining the reason she was bitching me out so much is that everytime I tried to use my keyboard, my IV alarm kept going off. Once again I had a bad IV person, the tubing was clogged, they had to come in and fix me up on the next shift. I was already in so much pain because of the "misses" the IV person did prior to surgery, so in my whacked out state, I'm like "Can't these people get anything fricking right?" Obviously, I had no business being online in the first place in that state of mind, but guess I had been feeling lonely and wanted to reach out to some online buddies in a chatroom. All they can remember after seeing me suddenly pop in is me typing.. "oh oh... NURSE... she's coming to take me away.. ho ho hee heee.... whoops" and then I disappeared. See what I mean? I can only recover memories if someone TELLS me what went on. Hubby remembers in my paranoid delusions going on about the "alarm" and only last night when the kids were enjoying this story figured out that the alarm I was yakking about was the IV pump. Otherwise he thought I was making up stories about pink elephants dancing around. Some of what I said made sense only I had no way of conveying it to any party.

This also reminds me of when I worked in the nursing home in highschool when residents would be so paranoid or crazy they would use their phones to call the rescue squads to come get them. The nurses would eventually order that the phones be removed from their rooms and they'd have no way of contacting even their family.

I'm damn near phobic about loss of control. I'd hate to see me get rared up to do "fight" instead of "flight" Having attended nearly three years of my kids martial arts classes, I'd probably be using Matrix moves if I could. (this cracks me up)

Since I've only been averaging about three hours of sleep a night because of pain issues (hopefully to be resolved tomorrow) I've been having whacky dreams about this last episode this week. Had to tell my husband, because although terrifying to me, they were funny. I was driving around for a pharmacy and dreamt that every single pharmacy in my town was looking for me and got a letter from my medical care team saying "This woman is a NUT, call the authorities to come with the net" Ironically in the dream I was taking my pants off in public and hiding out in a Costco because I got lost on the way to the grocery store that had a pharmacy that I thought might not have gotten a letter about me. This reminds me of the Seinfeld episode where Elaine has a rash and no doctors will treat her because she had the doctors record of "difficult" written in her patient charts and can't find any doctor around who hasn't been notified that she's "difficult"

Boy I sure can empathize with Elaine. Guess that's my fear.... "difficult"

Eh, I should have warned ya guys I'm weird.

Jen

Right Jen
You sound my kind of gal, the morphine was not an issue, but the puking was, so stopped the morphine pump (thought I knew better than the docs) still pucked and was in pain as well. the new pca pumps are good, little and often, small dose every five minutes.(you can push the button and hope in vain for some more) Still I'm sure some of my early notes on the whipe board while in ITU must have been crazy. My dreams have been crazy post treatment, suppose it's our way of dealing with all this crap.
Sunhine...love and hugs
Helen

Well, just the shock of me doing something so out of character is a very real fear. It's enough just coming to grasp with this disease without all the guilt and shame associated with it. I don't even care to tell anyone else that I have it simply because I'm tired of dealing with THEIR issues and desire to be treated normally and not like "dead woman walking"

Perhaps I realize that it's key to my recovery that I do get treated as "normal" and have some control. Granted I don't want to endure pain constantly just to maintain my faculties, but there's gotta be a solution.

Humor seems to usually be my vent valve, but if you are generally considered "funny" by nature, people will consider you a nut. I've embraced this nuttiness, and even have the capacity to laugh at myself when necessary. But man, I've always had control over myself, gotta KEEP that control.

Jen

Jen
Right lady kick up the butt time.YOU ARE NOT A DEAD WOMAN WALKING. you are Jen with OC. so what, so are we all.Shame and blame has nothing to do with it, I read articles that say I shoud blame my life style, stuff that for a game of solders, I'v been moderate in things and a lot of bloody good it's done me, but I'll fight every last bloody inch of the way, so lady in 5 years time you and me had better be here still moaning, or I'll have to kick your butt well and truely.
Sunshine... love and hugs
Helen

Jen,

I'm lost here, what type of surgery have you had?

Glenn

Hi Jen,I did use morphine to reduce my pain for quite some time. First I took it orally and then I had the IV pump during my 3 week stay in the hospital during treatment. I guess it was effective on my pain problem because I didn't feel any real pain during treatment. But it caused me great problem of constipation and skin allergy. I had to take antibiotics for 3 days to cure my allergy. I didn't experience any delusion or paranoia you mentioned. If you have sleeping problem, maybe sleeping pills can help you because I have been on these for over a year to help me sleep. You may also need some psychiatric counselling if you have negative thoughts. Just some sharing.
Karen.

I'm sure my negative thoughts were from the drug. When I'm lucid, I don't honestly think people are "out to get me".

The lack of sleep right now is a pain issue. Surely these things might be resolved tomorrow. At least I'm going to give it my best attempt to resolve them tomorrow. Hopefully weekends won't always be this "scary" It's like flying without a net because the you have to be away from the people with your records.

Not gonna work myself into a frenzy. I need to start an online diary just so I don't hassle you people to the point of annoyance. LOL

A little more about pain medications. There are 2 basic types - "long term" and "short term". They are used together for cancer patients. "Long term" refers to long acting pain meds that mask the overall constant pain threshold to a manageable level. Examples of these would be Fentanyl (AKA Duragesic time release 72hr pain patches). "Short term" is typically used for "breakthrough" pain that goes over the threshold managed by the "long term" narcotics. Morphine is very effective as it starts to work within 15 minutes for that purpose. As others have mentioned, we all react differently to pain meds and some can't take morphine and others, like myself, took a lot of it with no problems. There is also an adjustment period with pain meds while the brain chemistry is actually altered and rebalanced to accomodate it. So your intitial reaction may differ vastly vs. after you have been on it for a while. All pain meds will bring on constipation issues. Many times this can be the worst part of the whole cancer treatment experience. Work closely with the nutritionist.

It's ok to ask for "sleepers" too, if sleep is a problem.

Jen,

I, too, had a lot of pain from the PEG tube. I guess we are the only two. I, too, have some bizarre things happen with morphine. You can tell the doctors you don't want morphine and they can find something else. The nice thing about the patch is that the loopiness from the morphine does not happen. It keeps the pain in check, is time released and you bypass the bizarro world. Is it a winner or what??

Ed

Hi Jen, The important thing is discuss this pain med issue with the surgeon, pain management Doc, and the anesthesiologist. Its amazing how much better my last surgery was, they controlled the pain, and the throwing up which for me was an allergy to the anesthetic. Speak up, this is an absolute rule for all cancer patients. Take back some control. My chart always says "No Morphine."

The Fentynal pain patch 75 mg is now a big NO in our books. It made David so loopy! I had to take him to the emergency room because I couldn't wake him up. They had to give him Narcaine (spelling??) to wake him and the ER removed the pain patch. Time released?? IT was way too strong. Six hours after removal, David finally came back to me in a logical normal state. I can't believe that I was putting it on him every 3 days and not realizing that it was a huge problem. I was just following doctors orders in an attempt to control the terrible pain. It's a subtle patch that makes you forget that it's there. It's frightning to see the difference from when the patch was on and when it was removed. I don't blame myself...I just didn't know enough. We learn as we go along.
He also does not remember ANYTHING while he was on that patch. No memory of his parents visiting, no memory of the first chemo infusion, the ER visit, etc.

In regards to the peg. David had some considerable pain a week after the peg was inserted. We thought it was due to the extra loss of weight that week. He lost the body fat surrounding the incision site and there was no protective fat to stop the pain. It has gotten better now that we have started a regular feeding regime.

David has changed his chemo routine from once every 3 weeks to once a week. It's a lower dose in shorter intervals. We felt that waiting 3 weeks was too long with the tumor growing under his jaw. The side effects are less and there has been no nausea. The pain had returned but at a lower level which is another reason that we wanted the chemo once a week. He now takes as low a dose as possible to keep the pain under control. Percocet, Oxycontin and Oxycodone. I hate all that stuff. A necessary evil?

We are iced in here in Georgia. A freezing rain occurred last night. Very unusual and dangerous especially for us. We are staying in-doors like good doobies. I can't afford to get hurt in this stuff.

Brenda

Good to hear your experience, Brenda. I told everyone this week from the chemo, radiation and surgery department that I was freaked out completely on the morphine. I'm hoping that makes my chart, as I've told every medical professional all week long. People keep reminding me these doctors are suppose to work for ME. Unfortunately, I don't desire to be a monster, but I'm going to have to get my perspective straight.

All of the input here has been fantastic. I'm ashamed of myself if I'm not in control. Memory loss bugs the heck out of me.

Jen