Real men don't cry. Tough guys don't complain. It isn't proper to admit to being in pain, or to admit to any specific physical discomfort. Everyone else seems able to do this without whining - so I won't whine either. Just toughen up and get through this.

(If I told them how bad I really feel, they might not let me finish treatment.)

(I won't tell anyone how I really feel, because it will worry my spouse and family. I can take it.)

(I don't see others complaining. Nobody said this would be easy. If it gets "bad" I'll talk to somebody about it.)

Does any of this sound familiar? Did you (are you) ever say these things to yourself? What DID you say to yourself about pains and symptoms??

"He is amazing. I can't believe he is still on his feet. I never realized how tough (s)he is....."

When is this "toughness" display appropriate and laudable? And when is it foolish??

Just how much truth should you give your doctor? your caregiver? your family? TJ

I was "rigorously" honest about pain and it's management to my doctors and wife. Suffering does NOT make you heal faster and this macho stuff is for idiots.

The NCCN guidelines have a pain scale - people should use it to describe their pain. It didn'r embarrass me one iota to ask for and get the strongest narcotics lawfully available. Cancer pain and distress caused from it, is well understood and is also part of the NCCN oncology practice guidelines.

And I whined a lot - just ask my wife.

At 5K a treatment (for radiation) you'd have to be gray and gurgling before they will stop your treatment, besides people who stop treatment early typically have much lower survival rates.

Tom J, I am the most feminine tough guy you will ever meet. I was "just fine" until I went into shock from the pain of serious burns to my fair skin. I was cheerful on the telephone and wrote upbeat letters and e-mails. Being highly competitive by nature, I was determined to be the BEST patient on the face of the earth.

In hindsight, I can see how incredibly stupid this was. Or maybe not - I convinced myself it was almost a cake walk and by so doing, seemed to have gotten through some of the bad side effects easier than some.

Bottom line, I seriously recommend doing and saying whatever feels right to you. This is a very personal disease and as the patient, you call the shots. And for sure and certain, if you hurt, admit it up front!

I was determind to be a good patient too--and determined to be tough in some ways. I wasn't vocal enough about my pain quickly enough and then I tended to underuse the pain meds given to me. I waited until one dose wore off and I was in serious pain before taking the next dose, which makes it harder for the med to actually relieve the pain than when you just take it every X hours and don't let the pain get started. When I ended up in the hospital at the end of treatment due to burns and cellulitis and the nurses took over giving me pain meds all of a sudden I "got it" in terms of how they were supposed to work!

I was also a real tough guy in terms of the amifostine. It made me violently sick to my stomach almost every single day they gave it to me (which was most days of radiation. Often the intensity of the vomiting was so strong it would make me pee in my pants as well (and I normally don't have issues with this)! But I was determined to keep going with it because I thought it represented hope of a future in which I had a good amount of saliva and that not doing it would mean no saliva. It turns out neither of those things is probably true--it only helps 50% of the time and with IMRT I should have recovered some saliva anyway (actually I still fight some serious drymouth issues, even taking the max dose of salagen so I'm not sure either amifostine or IMRT helped me much). When I had the second chemo, the amifostine on top of that made me so seriously ill I was puking during the radiation and they agreed I should stop for a while then do every other day. I still do't know if I should be proud of myself that altogether I got through 24 amifostine treatments or if this was really a stupid tough-guy thing (apparently that's way more than most people get through, something I didn't really know until towards the end).

Nelie

By the way, I wouldn't be surprised if there are as many women responding to this as men. I think women, more than men, tend to try to tough out pain and discomfort sometimes......

Honestly, I gave them all what I felt they should know. Almost. Some things I felt compelled to keep to myself. I don't knkow why, I just did.
On the surface, I guess I figured I was in good hands with my surgery. I had to trust these guys right? My 2 littlest kids, though 6 & 8, weren't aware of the full scope of things.My oldest and my wife went along with what I told them.
There are still things I keep to myself about my pain, feelings, thoughts etc. that I feel I need to keep to myself.
Not a day goes by that I don't have a thought on cancer.

Hi Tom,

Tell them everything, but be strong. I once said to my wife, "I don't think I can do this anymore". She looked at me and said bluntly, "You don't have a choice".

My wife was amazed by what I (we) went through. But, we can do it!!!

We all know it is hard, but it can be done.

Esp. tell your care givers. They need to know about pain, etc.

And on 'REAL MEN'. It's OK to tough some things out. Right now, use evey available resource to minimize pain and increase your own comfort. You have a few weeks left, and I'm sorry, but they are the hardest. Each day is hard, but your care givers have a lot of solutions for pain, and any other obsticle you may face. LET THEM KNOW.

Plus, keep us posted. We will help any way we can.

Steve

In my experience as a caregiver, Dishonesty about symptoms can cause everyone alot of grief, not to mention anxiety, rush trips to an ER or a Doc's office and more pain for everyone involved. Amy

Tom,
I agree with Nelie that women tend to be the ones more apt to tough it out. No broad generalization intended, but in my experience as a nurse, women make far better patients then men. Men express their pain and discomfort better then women do. I was very stoic during my treatment, that's my way as I have a double whammy with being a woman and being of Indian blood. I found it impossible for me to give up my caretaker role and become the needy one! I used on pain medication during my treatments, vicodin, that I would take twice a day. Once after my daily radiation treatment and again when it was time for bed. I have always believed that some people are set up to tolerate pain better, they are more able in some way to control themselves and their reactions to it. I have 7 children, 5 of them natural, nothing (two of them blisfully pain free!) and I didn't so much as whimper once during labor. But there were women in there that SCREAMED througout the entire thing. I found myself able to focus on something else, counting is my mainstay, and it would almost remove me from the pain. I know this sounds strange, odd, all that good stuff. But it's how I deal with bad situations. So handling the physical pain of the conventional radiation I had was the easy part. The emotional part of it was tougher on me, as it affected not only me but all around me. My kids already feared that I was going to die, I made sure I was honest with them and they knew that was a possibility. I absolutely had to do my best to appear as strong as possible. They knew I was sick, they knew I was in pain, but they also saw me keep on pushing to remain as active and normal as possible, so that made them feel better. I never once tried to pretend I wasn't sick, I simply didn't let it define me at that time. I became during that time the same mom they had always had..............just now she was dealing with some stuff that would go away eventually. I found it easier to let my family recognize my physical pain and very difficult to allow them to see my emotional pain. 99% of my fear came from the thought of my children having to deal with my death, and those were not feelings I could share with a 9, 11, 12 year old.
So, I think we need to speak up to the professionlas about the pain, keep it under control. I believe we should allow our family to know we're in pain but not to focus the entire house on it, don't allow the families lives to revolve around our pain.

Spoken like a Mother- Minnie. Amy

Tom J,
As I've said before, my brother never complained - not even once. Honest to God, if I had known just how bad what he was going through was, I don't know if I could have handled it. That being said, please let your caregivers and doctors know about the pain. David would take it as long as he possibly could, then when he would kneal on the floor and just hold his head in his hands, we would scramble for the emergency room, only to be confronted by a rural medical center that didn't know how to deal with such a great level of pain or were afraid to "mess up" something MD Anderson was doing. Home was 800 miles away from MD Anderson and pain treatment was anything but easy. That being said, there are probably many things you need to share with your doctors and caregivers (in fact I would share all with my doctors) but you will know if something is more than your caregiver can bare. Believe it or not, and I know this is selfish, but we draw strength from you, our loved one and cancer suffer. Because of David's lack of sharing I was afraid he was in complete denial, until one day his little 5 year old girl drew a picture for my sister and said, "This is my Daddy crying." David has been gone 11 months now and the days I have not thought of him and cancer can be counted on one hand. I do wish he had communicated more about his illness and please never hesistate to tell someone about your pain. Only you can decide about the rest.
Best wishes and I hope things improve for you soon,