Could also use some advice

RAA

Hello Everyone,

I could use some advice with an unusual situation... 

Wow -- Where to start.

About 9 years ago, my mother was diagnosed with TWO forms of cancer, each in one breast. One was ductal carcinoma, and in the other, she had adenoid cystic carcinoma of the breast (quite rare).  She had a double radical mastectomy, and elected not to have reconstruction (though she was quite young at the time, about 50.)  She was clear for about 3 years, and then the ACC spread to her left lung.  She had a lung resection. She was clean for about 3 years, and then she it came back again.  This time, she decided to wait and wait... (she was pretty fearful of the whole thing, understandably). She just recently had another resection of the same lung. However, this time it didn't seem to go so well. 

The first resection, she was up and pretty much pain-free after the first month.  This resection (understandably) was a lot harder on her.  She is down to the upper 1/3 of her left lung (partially functional), and has a clean right lung.  She is in fairly good shape (or at least was), and is trying hard to keep active (taking a walk by the beach as much as she can.) 

However, the big thing is that now it is about 4 months after the surgery, and she's still in severe pain.  She's taking prescription painkillers to keep semi-functional, and she's very depressed (even thinks she doesn't come off that way to me), and worried that she'll never go back to work again. She spends most of the time in bed (other than the time she's walking, or doing chores)... she's lonely at home (most of her friends are still working), and it just seems like it's been a downhill slide. 

The pain is where the surgery has been done.  She has went to the surgeon, and the surgeon has suggested on deadening the nerve in the area -- as he might have accidentally "nicked" it.  

Yet... she is refusing this treatment.  Everytime I try to suggest something about pain management, or looking at some sort of technique to help her manage pain, I am met with one phrase: "Don't go there."  It may be cultural as well, because my mother is from South America.  She is also an R.N. as well, so she knows exactly what is going on. 

It's so unlike my mother.  I know that she's in pain, and that might be 'flavoring' her responses... but I am concerned about her. Deeply.  My father seems to be in a state of 'denial' - and my brother just seems to ignore the whole situation just to keep himself stable. (But that's another story)  I cannot say that the unhealthy family situation necessarily is helping.  

I want to help her but the major problem is that she is on the West Coast, and I am on the East Coast trying to complete a Ph.D. in engineering. Part of me feels guilty that I have established myself out here, instead of being with her. (before the second reoccurance.)  

I know that she is in charge of her body -- but seeing her in pain is really, really difficult.  Going home and seeing her personality change because of the constant pain is really difficult - it makes me almost loathe to go home for the holidays, because for most of the time, I am shielded from the general gloominess that I face everytime I've gone home as of late.

My question to everyone here:

What should I do about this? I really don't want her to continue to live in pain -- in fact, the doctors say, there is no reason she should be facing pain everyday of her life because of this?  If she doesn't want treatment to stop the cancer anymore (She doesn't want to fight it anymore - that's her choice, and I accept that -- as hard as it might be.), she shouldn't have to live in pain. 

They gave her a catscan last month because of this unusual pain;  however, she is very, very secretive about sharing the results of anything with anyone. I generally only learn what is going on at the very last minute.  I'm worried that they may have found something that had spread to the rib/bone, with all this pain.

Any advice to help?

Thanks in advance,

-R 

iodine

Oh, bless your heart.  What a horrible place to be.  I'm not sure you can do Anything about it.  If she's not being straight with you about her condition, prognosis, etc.  I don't see what you can do.

Is she taking any antidepressants?  If so, maybe the dosage and/or the type need to be changed.  If not, it sure sounds like she would benefit from them.  They can also help in some pain management.

Have you considered calling her doc and scheduling an appt with her/him?  I know they won't tell you much about her condition, etc, but you can discuss your concerns with the doc and see if any recommendations are available to address this condition and any ways you can help her seek relief.

Bless you.  And don't beat yourself up about continuing your education!!!  You didn't plan on all this happening and being at home would likely make little difference with your Mom's thinking.

chemo072

I don't know what to do about secretive parents either - it is their health, their life, as long as they can deal with it that'd be good, but when they're not...sigh...the trick I think is to get in past those barriers, to be seen as someone who can actually help - instead of just a child, even an adult child, who they still have to parent.  And I'm 39, so I know of what I speak.  Have you sent her flowers lately?  Maybe if she just knows that you're there ready to help, whenever she wants help, she'll open up....

And Dotti are we allowed to talk to our parents docs without our parents permission? Somehow I don't think so.  I had to sign all sorts of waivers naming them as people who could talk to my docs... I assume the privacy protection works both ways.

iodine

You can always Talk to the doc, he is very limited on what he will be able to say about a medical condition, I agree.  HIPPA laws and all that.

BUT, he Can address your concerns and often offer assistance on how YOU can help your parent, without going into private information.

Shirlann

Is she in Hospice yet?  They do all the pain needs themselves, and you can have ALL YOU NEED!  It might be time to consider calling them, you can explain your mom's fears and maybe not even tell her yet they are Hospice (they are very well trained and discreet), but that will solve the pain problems, pronto.

Hugs, Shirlann 

nice

i also have a friend who is living with cancer

and its realy hard for me to cope with it

but you just need to support hur desison and be ther for hur