Ferret,

Oh this sounds crazy!  I couldn't imagine being shut out of my mothers treatments.  Can your husband sign a release in order for you to be able to get his medical information??  I live 12 hrs from my mother.  Therefore we set up a password so that I could get information.  I called the nurses stations several times a week and they never even requested the PW not even once. Sounds like you have some sticklers!  hugs, nicole

Ferret --

I don't understand why the docs didn't have your husband sign a privacy release the very first day that he was seen.  That's the only basis that they can withhold information from you. Or doesn't your husband want you to have info (although I can't imagine why not)?  Find out immediately whether he signed a privacy release -- if not, talk to him and the doctor's office and have one signed immediately. If he signed a privacy release, then I personally would find their withholding of info unacceptable.

Also, I notice that privacy issues aside, your husband's doctors tell you things like "he has peripheral T-cell lymphoma" and then refuse to give you any additional information. This leaves you understandably anxious and confused. I realize what a stressful time this is for you and I hate to sound harsh, but they may find you difficult to communicate with and/or feel that you won't understand what they are saying (as you know, I eventually gave up trying to explain the categorization and subsets of NHL peripheral T-cell lymphoma to you).  Unless and until someone officially determines that your husband is no longer competent to make decisions, they are under no obligation to consult with you before beginning or changing a course of treatment. My husband has been with me at least 75% of the time I have seen a doctor, but they rely on me to convey pertinent info to him after the visits he cannot attend -- they don't call him up to tell him what transpired. However, if and when your husband signs a privacy release, they cannot withhold answers to questions you pose to them. Perhaps you could set up e-mail communication with them so that they can respond to you when they are not pressed for time.  My doctors prefer that to being called at times when they are very busy (unless it is urgent) and they always respond in less than 24 hours.

Again, your husband is very fortunate to have you trying so hard to look after his best interests -- I have encountered too many folks at the hospital who have to undertake this ordeal on their own.

Cranky

Ferret --

As you say, if you just get your husband to sign a privacy waiver the "no e-mails" issue may just get resolved as also may the reluctance to give you additional info about hubby.  They are just following the rules -- and it is pointless to try to get them to violate them.  Just stick a pen in your husband's hand and have him sign the darn form !

As for "non-specific peripheral T-cell lymphoma" being a subset of "peripheral T-cell lymphoma"  I spent at least 3 e-mails trying to get you to understand this.  In fact, non-specific peripheral T-cell lymphoma makes up about 50% of peripheral T-cell lymphomas.

Your questioning the doctor about your husband's brain lymphoma is VERY pertinent and appropriate.  You obviously want to know if it means his lymphoma has metastisized to his brain and central nervous system or is it primary brain lymphoma, as well as other things.  I have no idea as to whether treatments or tests would differ, but I'm sure you want some answers. You probably wouldn't get much attention from the doctor during rounds even if you were there -- it's been my experience that the docs on their rounds kind of fly in and out of the room as quickly as possible (unless there is a specific change in condition to address) so that they can get to all the other patients they have to see and then start their office hours.  Your anxiety is not misplaced -- it's being magnified though by your inability to get info. But you're simply not going to get enough info if you don't have hubby sign that HIPA release!

Cranky

Ferret --

I am so very sorry to hear the bad news about your husband's prognosis.  You have really been through a tough time -- with a tougher time to come, I fear.  Just try to keep in mind that your husband may indeed be in the 30% that responds well to the chemo he is going to receive -- somebody has to be !  I personally have been told by my doctors twice in the past 17 months that I would be gone in a matter of weeks.  Both times I beat the odds and made it to transplant -- and I'm still here !  Try to be at the hospital to support your husband as much as possible through this and keep his spirits up -- it is something you can do both for yourself and him.  Even just sitting by his bed and holding his hand will help heal your hearts.

It might help you to feel a bit less helpless and despairing to find out from the doctor exactly what chemo regimen they are starting.  That way you can do some research on your own as to its efficacy and alternatives and ask good and pertinent questions of the doctor. For example : "Why are you trying Drug A instead of Drug B?"  I know you must feel like you're standing in the middle of a hurricane, but anything you can do to empower yourself may help both you and your husband through this ordeal.

Wishing you both all the very best,

Cranky

If I were in your predicament, I would contact the LLS to find an advocate who might intervene on my behalf with his doctor.  If there's one lesson I've learned from dealing with the C monster for a year now, it's this:  Some doctors are jackasses.  Period.  No polite way to put it.  Yes, they graduated medical school which is no mean feat but as far as talking kindly and sensibly to a spouse or family member, forget about it.  They are truly incapable of that basic, primary function which really is a cryin' shame.  Because you need some kind, straight talk and you're not getting it.  But you can find it through the Lance Armstrong Foundation website too.  Call them, someone will intervene on your behalf.  Between LLS and LAF you'll find the right help.

Robin