What would you do?

Cathie,

As a mom I can understand where you mom is comming from, but this is about you and you needs not hers.  That said, you need to know everything you can about your cancer so you can make informed decisions on your treatment also. You should be the one asking those question not her.  You need to know the bad as well as the good.  This is a long process and there are alot of decisions you will have to make. 

Bottom line, mom should be quite and you should ask those question.  Knowlege is what helps us heal.

good luck

Pattyinarnold

Hi again, Cathie -

As someone who has faced BC as both a mom and a daughter, I understand both sides of the situation. In this instance, however, I'm going to take mom's side.

My oldest daughter was extremely ill some time back; we even feared she might lose her eyesight. I went with her to all the various the doctors' offices, even though I was also under a gag-order, so to speak. My daugher (out of fear) only wanted to hear the positive, even though she was in danger of neglecting important aspects of her treatment by not investigating her illness thoroughly.

I lived in fear. I didn't want to lose my girl, and I also didn't want her to suffer needlessly with side effects that she might be able to avoid. So I went against the gag-order, and asked the doctor questions during one of the consultations. (I'd like to add that I had no way of asking these questions outside scheduled consultations since we were dealing with a specialist who flew to the island where we lived for consultations, and then returned to his mainland hospital.)

My daugher was furious, just as you are furious. However, we did find out that an oral treatment might be as good as a surgical procedure that was being considered (if anyone wants further info, please PM me). When my daughter calmed down, we decided to try the oral route, and thank God it worked. My daughter was spared surgery. However, we might never have known about this alternative if I hadn't spoken out of turn.

No matter. Had I spoken up and found out nothing we didn't already know, as a mother I still feel I had a DUTY to inquire. Even when our children are older, even when they're adults, we remain parents and feel responsible for the young ones we've brought into this world, watched over, and cared about for years.

I vote with your mother. She loves you and is probably frankly terrified.

Hugs,

Annie

Dear Cathie

I too agree with you. I want the truth, good or bad, but I don't want anyone else asking questions.  My husband is upset that I won't take him to appointments. That is unfortunate.  He has embarassed me in the past.  I won't let it happen again. Don't let your mom in the exam room. This works for me.

Cathie-

I can understand why you are upset but your mom is very worried about you too and possibly more worried than you are.  Yes, she should respect your wishes without a doubt but she is going through alot as well.  You need to have a heart to heart with her and work something out about respecting each others needs. You are fortunate to have such a caring mom. Appreciate her.   When I called my mom to tell her that I have breast cancer she said to me oh well.... everyone has their problems and informed me that her knee has been bothering her lately.  Yes, it didn't faze her and she could have cared less that her 38 year old daughter who had 3 young (10Yr old,5 yr old,8 months old baby) has breast cancer and is hysterical and needs her mom right now.   She never offered to help in anyway (she's retired and has nothing to do), she didn't even call to see how I was doing, never mind going with me to any doctor's appts.  Now you got to hear my story and what kind of mom I have but we can't choose our parents so I just accept her for what she is.  I would have loved to have a mom that cared enough to go with me to atleast one of my numerous doctor appts.

Cathie, I agree with you, and with Marin's advice.  You said this:  "My mother tends to do what she wants and just apologize later, thinking that it will just fix everything to say she is sorry, but not feeling bad about her actions."

That behavior is very familiar to me--it's how my mother has always dealt with family interactions, too.  In your case, there could be several reasons why your mom violates your wishes about medical information:  She may be very concerned about your welfare, and she needs more information than you are providing to her; she may think you need to know more about your condition, and this is her way of forcing the issue to ensure that you get it; or she may not be able to control her emotions, so she blurts things out and thinks everything will be OK if she apologizes later (which is what my mom does).

In any case, this is your cancer and your life.  Your mom has no "right" to compel you to hear things you have asked your doctor not to tell you.  She has no "right" to force herself into situations where you'd rather not have her present (like attending your doctor's visits with you).  You are an adult woman, and she needs to concede that you have the privileges and authority commensurate with adulthood.  (I first wrote that she should grant you those rights--but you earn them with maturity, not because she decides to give them to you.  They're sort of inalienable.)

OTOH, my mother would say (and has said, as recently as last year), "You are my child, you will always be my child, and I can treat you like a child if I wish!" (I am 56).  No, mom...sorry.  You can treat me that way if you wish, but I don't have to expose myself to that treatment anymore.

So, Cathie, in my opinion, you should not invite your mom to accompany you to your next appointment.  If she asks, or insists, you can simply tell her (politely), "Sorry, Mom--I'm going without you this time."  Explain, if necessary, that you made this decision because she went against your express wishes.  Or make up something more palatable.

She may tell you that you need to know more about your cancer than you are willing to hear.  Explain that you are an adult, now, and you are capable of making decisions about your welfare--even if she doesn't agree with them, or if they don't seem logical to her.  What you want to hear about your situation is something you need to negotiate with your doctor.

Heck, that's one reason why the federal government has HIPAA regulations in the first place--so patients are in control of their medical information, and can decide who has access to it.  My mom would be very upset if she found out that I've restricted access to my medical information (including my status if I'm hospitalized or undergo surgery) to my husband.  He is the only person to whom the hospital and my doctors can release information about my condition.  Everyone else must go through him or call me directly.

If your mom wants more information, she should call your doctor and ask him (assuming you've authorized him to release information to her).

I'm sorry if I sound really upset about this issue.  It's too close.  I hope you work this out, Cathie.

otter 

I won't allow my mother to go with me to the doctor.  She talks to doctors as if she doesn't trust them and I find it embarrassing.  She was upset with me many times during my treatment (I wouldn't let her go to chemo either).  When I was having my second surgery she showed up before hand and I allowed her to wait with me in the pre op room.  The doctor came to see me right before surgery and my mother started in with her questions.  I said something to her right in front of the doctor who mouthed to me "it's okay I can handle it" and he did!  A week later she asked to go with me to the doctor!  I flat out said you can't be trusted and you proved it last week.  So sad, I wish I could enjoy her coming with me.