Not sure how to explain it

[wondermom]

My aunt just called me and was asking me questions about mom (her sister) again. She (and others) always call me because she doesn't want to ask my mom. She doesn't understand that stage IV lung cancer is not curable but it can go into remission. She was questioning me on it and I really couldn't give an explanation. She said," Why can't it be gone for good when it is gone?" I don't really know what to tell her. It is so upsetting to me that my family members come to me for information and then they just end up getting upset as well. I am glad I can be helpful but...it does take a toll on me too to have to keep rehashing the details of this whole thing.

I hate to be the bearer of bad news and I am hoping as much as or more than anyone for a long remission for my mom but I also know the reality. My aunt really believed my mom would be "cured" after 4 sessions of chemotherapy. She doesn't want to hear anything else. I just tell her I like to think of it as more of a chronic illness with lots of ups and downs. She may go into remission and then it may come back and we need to treat again. Any advice on how to handle this?

Thanks

[kamataca]

You have an awful lot of people relying on you. It sounds like your aunt needs something to hold on to...something to believe in. I don't think you have to 'convince' her of any reality. Perhaps just give her the info, and let her do what she needs to with it.

I think I am the one in the family who is too realistic. Maybe it would be nice to be the one who is so optimistic.

Good luck!

Kelly

[wondermom]

Thanks for your response. Believe me, I want to hold on to any bit of positive news I can. I am also just on edge with my mom's PET scan coming up. I was doing great and thinking the best until I talked to my mom today and she doesn't feel like things are getting much better. It just kind of burst my bubble and then to have my aunt call right after and to have to tell her that it might not be as easy as she was hoping for. Just kind of got me down. It seems like I am doing fine until I have to tell anyone something that is new to them. Or if I have to tell someone about my mom who doesn't know yet. I practically had a nervous breakdown at my doctors appointment the other day. I just broke down and cried through the whole thing while the nurse hugged me. My mom says I am her rock and that she feeds off my strenth and optomistic attitude. I am sooo glad I can be that for her but thank goodness for this board because I do daycare for a living and 4 year olds aren't the best people to talk to about this. My husband tries to be there but he just doesn't really understand the depth of the hurt and what this is like. On the outside I try to be so strong and optomistic for everyone involved but on the inside my heart is breaking and I still can't believe this is happening.

Thanks for listening.

[twodogs]

mom,

One of the sad facts you will encounter is that so many people are just ignorant of what cancer really is and what it does or doesn't do. Best thing you can do is try to remain calm and understanding with your loved ones while dealing with their concerns. It will weigh on you as you already know but, they are mostly sincere and afraid to go elsewhere to ask.

I, for one, was about as ignorant as a stick about the disease and still am no expert. Generally we only know about what we have to deal with. While I was undergoing treatment my wife was doing all the research so she was and is more an authority on most things than me.

I actually had a guy come up to me once and proclaim that I must have the "good" lung cancer because I was not hospitalized. That was right after I'd first been diagnosed and my prognosis was very dismal, to say the least. Since he was neither dear to me nor a relative I dumped on him like a cement truck. I don't think he'll be so presumptuous in the future.

On the other hand, when dealing with my mom and kids, I am as honest as I feel they need me to be. Mom has a tendency to forget things quickly but the kids do their own research so they're not being fooled. Also, our daughter has breast cancer and is undergoing treatment for that so we're both still learning.

Be patient with those who need it. Do what you want with the rest.

Best wishes for you and your mom. All of us here will be praying for you both.

[teriw]

It's a hard one. I too am in your position -- the one everyone asks. The only people I really talk details with (other than my hubby, of course, as he's the one with the cancer) are my parents -- my mom, specifically. She wants to completely understand, and I need someone to just be candid with. I'm so lucky to have her.

For everyone else, we realized up front that if people wanted to find out details about the type of cancer Bill has, then they'll research it themselves. If they don't do that, there's probably a reason. We take the same approach with family as we do with ourselves. Focus on where we are today -- because frankly, we have no clue about tomorrow. It's in God's hands.

When we give good news, we just always have the caveat -- things can change at any moment and that the cancer has a bad habit of coming back, but we're keeping positive. We usually leave it at that and everyone accepts it -- it's honest, but not so detailed to make us have to repeat things all the time. (My hubby always has to add, "hell, I could get hit by a bus tomorrow.")

And you know what? People do beat odds. Also, an aside. My hubby also "felt" like his last PET/CT was going to be bad. He just had a feeling. You know what? It was excellent. Hoping the same for your mom.

Hang in there -- your mom's lucky to have you.