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I'm The One With The Headache


Fay A.

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After nearly two months of almost daily optical Migraines with painful Migraine-like Headaches I finally had an appointment with a Neurologist last Wednesday.

While in his exam room I was interviewed by his assistant. My husband was with me.

As we were going over the medical history the medical assistant kept remarking in a very clinical voice, "...This is unbelievable...". When I reached the part about the benign adrenal tumor (before the Crohn's Disease but after the benign brain tumor, the Lung Cancer, and the Polycystic Organ Disease) she stopped, put her pencil down, looked at my husband and said....

"You poor thing! This must be so hard on you."

Mind you, I'm not all that crazy about my medical providers gushing overly sympathetic towards me. I want them to know their stuff, and I want them to treat me with respect. I want them to help me do the things I want to do: live long and function well, and be relatively pain free. But I think I do a fair job of dealing with the emotional aspect of all of this without a whole lot of "...poor me...".

Having said all of that, I think that the pendulum has moved too far from center on the patient/caregiver issue. I know that being a caregiver to a Lung Cancer patient is tough, because I was one. But when the obvious focus of concern is NOT the patient, but rather the one who accompanies the patient to the appointment, then there is something very, very wrong. And make no mistake about it. This woman's focus was on how all of this affected my husband. Not me.

sigh.... :roll:

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Fay,

I was the caregiver and I couldn't agree with you more. While I appreciated when family or friends offered to help, I always directed them to Earl.

And now that my sweetheart has died, when people say how sorry they are for me, I thank them but again I tell them that I am most sorry for Earl, he died way too young and really had a lousy last 2 years.

I am not a saint about this (how boring anyway) and I have had many a day where I really felt sorry for me. But that nurse was totally out of line. I am sorry.

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It's one thing when lay people don't quite get it right....but medical personnel?

Musta made you feel almost like the assistant was hitting on your hubby or something, right in the middle of taking down YOUR symptoms, eh? :roll:

For us, and speaking strictly about the public (not medical types)....people are always asking my hubby how I am. Rarely...and I mean, RARELY, does anyone say to him, "...and how are YOU coping with all of this?" I've told him tons of time...if someone asks how I am...he should tell them (if he wishes), "Why don't you call her up and ask her yourself!!!" :x

He really gets weary (as do I) of people who ask after me when it's easy...when they run into him. But do they think to ever pick up the phone and actually call to talk to me? Hmmmmmm..........no! :? And worse, they don't even think to acknowledge HIS stress and ask how HE is doing!!

There has to be a balance somewhere. As a patient...and one who considers herself lucky NOT to have suffered horrible side effects...I still realize that in some ways, all of this has been harder on my husband.

Men tend to be "fixers". Problem solvers. Give them a dilemma and they figure they'll come up with a solution pronto! Well....not when it comes to cancer. This ain't like replacing a burnt out light bulb....is it?

Don't know about your hubby, Fay...but mine has spent some hours being One Angry Man. Matter of fact he's spent some days and weeks being One Angry Man.....because HE CAN'T FIX THIS!

Again....there must be some balance. It's not easy being the patient...and it's not easy being the caregiver...but the stresses are NOT 100% the same. My hubby has said he won't care about much else if I'm not here. I can empathize with that...as I've buried all my family of origin but one.

But we patients face the "not being here" part....or perhaps dying before certain events happen that we very much want to be here for. Okay, sure....we all run the risk of getting sideswiped by that beer truck of Becky's at any time.

But when you have cancer or have had cancer...it's an insidious disease and it plays an insidious number on your head.

Shucks....I've gotten way off on a tangent here. A related tangent, at least...but the point is...that doc's assistant was off base in directing the bulk of her sympathies to your hubby, Fay. Not discounting that it can't have been easy for him watching you go thru this....the operative notion there is that you were the one who WENT THRU THIS!!

Early after my original dx, one day my hubby let some of his anger out. He said, "I can't believe this is happening to me!" You'd have been proud of me. I didn't say a word at first....although you have to KNOW I was thinking...."This ISN'T HAPPENING TO YOU, YOU SCHMUCK....IT'S HAPPENING TO ME!!" :roll:

Actually...it was/is happening to US!! In differing ways, to be sure...but it is happening to us just as YOUR situation, Fay, is happening to you AND your hubby.

Anyone in the medical profession that doesn't really GET THAT....ought to see a career counselor! :roll:

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Crapt, Fay,

Where do these folks come from.................?

My personal gripe is relative to those who wait till Brian is out of earshot and then say things like:

"How is Brian feeling?"

"Poor Brian"

"He looks pretty good"

"What are the doctors saying?"

"When will that rash go away?"

"How is Brian telling his girls?"

and on and on and on

Like he can no longer think, act or speak for himself. I refuse to allow him to be negated.

I can't imagine what it would be like to be Brian and to have the notion (correctly) that folks are whispering behind his back. I refuse to be a part of it. I think his diagnosis is traumatic enough without allowing insensitive people to add to his load.

Sorry this happened Fay..............it is just plain wrong.

We are with you.

Pat and Brian

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Thank you, Addie, for your wonderful words of wisdom. They brought tears to my eyes. My husband of almost 35 years has been wonderful, but I see what this has done to him since dx last Oct. He isnot the most patientof men (being Irish), but he has been my love and best friend since high schoo;. He doesn't do well with bad things and I know he is depressed with the new setback. We don't talk a lot out loud about this, but it's as tho we know what each of us is thinking, and we are both trying very hard to be strong for the other. He brings up Lance Armstrong alot. So we trudge along; if anyone talked to him like that medical person in front of me I would have said something -- no need to be polite to people like that!!!

Pam

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ugh, Fay. that's awful. how invalidating! I have to say, we've been lucky with my mom's surgeon - it's like she's the only person in the room when we see him, until he's through with her exam/consult. THEN he turns to my brother and me and says, now do YOU guys have any questions?

I don't have enough experience with the "pendulum" to comment, but I know you deserve better.

and I agree with Pat's observations (as usual! :wink: ) - people project their discomfort with cancer onto my mom. she's pretty accepting of her illness (although not, necessarily) everything that goes with treating it). suki is a world-class eye-roller in the face of people who speak/act inappropriately. :lol:

hang in, hope your head feels better.

xoxo

amie

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Oh, good grief. This is why I dumped the primary care doc I had -- well, one reason anyway. He's been friends with my sister for a long time, and if he wanted to know how I was doing, he'd call her and not me. Finally, I filled out the form in his office to undo the authorization to discuss my medical treatment with her, but he still did it. That, and the fact that he was extremely rude to me when I was so sick a year ago. He was out of town, I called on his cell phone to see if he could give me the name of a doctor to see, and all he could do was to be rude, so he's out of the picture now. I told my sister that if he asks about me again, feel free to tell him I said "bite me," and I mean that in the most tacky way.

My mother is convinced that my sister is "taking care of me." Not so. I take care of me. When and if my sister shows up, she stays about half an hour, tells me what to do and how and when, then leaves. If there is any serious taking care of called for, it will be home health care or hospice, that's for sure.

One thing is for sure -- you really learn about people when you have a crisis, huh.

Di

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Fay,

I haven't had anything quite that horrible happen, but there have been times when the doctors will look at me when they talk instead of hubby. I will direct my eyes to hubby and that will always cause the doctor to also switch his attention to hubby and off of me.

Any chance you could prompt your husband that if that happens again that he should take the lead and direct it right back to you.

Or better yet, you could say something like: "HELLO! Wakey, Wakey Dr. Compassion! He's not the patient here." :)

Love and hugs to you, dear Fay.

Peggy

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Hey there Fay.

I agree whole heartedly with all who have already posted, although I have never experienced anything like that myself. But having known you since the onset of our message board, and knowing your affinity for speaking your mind -- how is it you didn't say something to enlighten this assistant right then and there? I know, you have your reasons. Anyway, enough is enough!! I can't keep it in any longer. Fay, imagine I am looking into your eyes... "Fay, you poor thing." Take care.

David P.

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Oh, I don't know what to say that hasn't been said. How insensitive!!!! Unbelievable! What did your husband think? Did he notice? (Sometimes my hubby is so tuned out to things that it darn near kills me!). Anyway, Fay, please know we totally understand. My son is just beginning medical school and I'm gonna share this one with him -- hopefully to his amazement.

Gail p-m

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Dear Fay,

So inappropriate! I just want to say I take care of mentally handicapped men and they live with us and this happens a lot with them as if they are not people. When I am asked a question I just turn to the person it is being asked about and ask them myself. That sets them straight. It is unbelivable how many times I have to do this. It is truly sad.

If I were you I may have said exactly what your post says " excuse me, I am the one with the headache here." I bet she would think twice about doing that again to you or any one else.

My prayers to you my friend.

God Bless You,

Jane

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My friend and I call insensitive idiots like that nurse "Hamsters" because they get on their little wheels in life and run and run..totally tuned out to the world around them as they continue on their meaningless journey. That woman is clueless and truly not worth another moment of your time.

Trish

Don't let people rent space in your head for free.

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I want to thank you for understanding and for sharing insight I had not even considered at the time, but now believe may have been at the heart of the matter. This woman looked at me and my medical history...then buried me.

I hate it when that happens.

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Then, Fay, reach up and grab that woman's shovel and beat her over the head with it!

Buried you and attempted to move in on the ol' hubby..."The poor dear" :roll:

Glad we could help you out of the hole, watch your footing next time, K?

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