I've been sitting here for a few minutes trying to compose these thoughts in my head, but I think I am just too tired so if this comes across as scattered I apologize. I think you will get the jist of the question(s) though.

When I went through my first roll as caregiver I was 26/27 and it was my mom. I closed up my house and moved home to help dad. Out of all the things that are horrible about being a cancer caregiver from doctor's visit to death - the one silly thing that has stayed with me from a CG point of view is how to talk about your loved one. I think this has stayed with me because I never "mastered" it. Now that I am going through it with my husband I am struggling with that again. How do you know if the people you interact with are truly asking how are you / how is Dan or if it is just the superficial How are you that we've turned into a form of greeting? Then how do we answer it in a concise manner that truly conveys how he is doing? And then there are the peope that see him and say wow he looks great and thir assumption is well he must be fine to look that good. Or the peoople that are like - oh he's going to work each day -there's nothing wrong with him. Or the bazillion people who don't know anything about H&N cancer, but think they know about cancer and are constantly telling you that radiation is no big geal. UGH - this frustrates me. And when your loved one is having a good day and someone asks you how are they - and you're like oh we had a good day and went out to eat or shopoing or whatever and there like wow - I'm really glad he/she is improving that much. And in your head you're like it's not improving it's just the meds working great today or a good nights sleep for a change or amazing strength. I think my biggest thing is I don't feel like but a few people in our life think this is serious. I don't know why I feel like they should think that or know that, but for some reason I do. And Dan's brother I guess is in denial and so is his biological father because they keep telling me this treatment is poison and I just need to get him to drink some stupid juice made out of some berry. OK Whatever! I try to be polite and I even sent my BIL a very nice, long and detailed e-mail saying this is what is to come and the prognosis is 50/50 so shut-up about the juice - i'm going for the real deal stuff. And then on top of that - they just think if I pray harder it will all be ok. Well I'm sorry - I have a great deal of faith and I do believe in God, but I have a hard time when it comes to things like this.

So anyway - how do you respond to the phone call or the e-mail or the friend at the door bringing you dinner... I do have a CaringBridge site that I keep updated for family and friends so I don't have to answer as many of these questions. But then there are those that are "too busy" to read it and want to call you and get the scoop and sometimes you're just tired and don't feel like talking (I am a horrible call screener these days).

I have missed my mom more than words can say since we lost her in Feb. of '01. I miss all the normal stuff, hanging out, cooking together, shopping together, talking on the phone - just life. The worst things were she never got to meet Dan, she wasn't here for my wedding, she wasn't here when I lost my first baby and she wasn't here for the birth of david. Now I have to add to that selfish list - she isn't here for me to cry on her shoulder while my husband fights cancer. I'm sure she would have some advice for me... And I don't have a MIL because we lost her to Alzheimer's in '05. I do have a fabulous step-mom though (she lost her husband about the same time my dad lost mom) and they met in a grief support thing. And she loves me I know and loves David, but I want my mommy LOL!!

Ok - sorry this went so long and got a little too deep.

One other thing - do you dare tell people how you are really doing? Because then you would be dropping the I am superwoman "front"...

I like it Michelle. at least you are saying from the heart and not like you rehearsed it. I can understand exactly where you are coming from. I went trhu that with both parents , one older brother and 2 younger brothers. I think people just get tongue tied and don't really know what to say to us. I wish you well and thanks for letting us know how you feel.

Michelle- Just say what comes to you at the time. You'll begin to realize who wants the truth and who wants the fantasy version. I've also gotten the juice cure bull. That stuff is actually counter-productuve to H&N cancer. Just tell them you'll give it a try, that's what they want to hear. It makes them feel important. People don't really know how to act unless they've been thru this hell. I don't think I ever did. I keep hoping this will make me a better person in times of crisis for others. Something good has to come of all this. I'm so sorry about the family members that won't face what you are going through. Maybe it's too painful for them. My inlaws are great howwever, i know if it was my sibling I would be a little more heplful.
Your mom's passing is such a tragedy for you, especially now I'm sure. My mom can be a pain but I cannot imagine life without her and your story makes be pause to remember that. Keep your head up. You are a wonderful person with a lot on your plate right now so take care of yourself also.
Sue

OHH, How I can relate with all of this that you are going through. So much so that I wrote an article about this very thing on my blog. www.surviving-oral-cancer.com/2008/07/recovering-from-oral-cancer.html

I tell them all exactly how things are. I get a tad bit stern with those who always ask and know better, IE: my sister, but I give them all the same story. ( I am no better today than last week. Ask me that again in 6 months and then a year.) LOL Sounds like I am being a smarty pants, but it is so very true. In 6 months to a year, I can have a different report to give them rather than asking every week, or every day like some used to do.

Best to you and Dan,

John

I like that same answer and tell my friends and family the same. Once in awhile some dipstick will ask, well how ere you a week or month ago. I tell them they should have called to ask me at that time.

You are so sweet Michelle that Im sure you and Dan have many friends/acquaintences who are genuinely concerned. You are right that most people dont understand oral cancer at all. They dont realize that chemo alone isnt magically going to fix somebody and that radiation will cause horrendous side effects for some.

Any friend who appears at your door with dinner I would say is a true friend. They are taking their time and effort to show your family they care. Maybe they dont understand it completely but with that gesture they are trying to help.

Ive been in the same situation at work with so many people asking me if Im ok. My answer is pretty short. I just say its a long road and Im trying. If they ask me more questions then I feel more comfortable giving more info. By them asking questions it shows they are really interested.

Sorry you miss your mom so much. Good luck with your responses.
Sorry I didnt post this sooner when you really needed the info.