Dear All,

This is my first post, so be patiente with me! I am learning the tricks here! So, i am in the middle of a reconstruction after a double mastectomy (one for CA, the other one prophylactic but turned out to have 3 pre-cancerous lesions in...). Ihoped for immediate reconstruction. After surgery I immediately had severe pain on the left side which was diagnosed as post mastectomy pain syndrome. I am under the care of the pain department and it is very must controled (with heavy narcotic and gabapentin at max dose). They also put me on Valium (5 mg, 3x/d) at the hospital. Since then, I requested to have the valium exchanged with another antispamodic (not a benzo) as I am very sensitive to it and become very depressed under it. Since Sept i ams till using valium... each and every time I am requesting to have it exchanged and got no answer. Then, my PD decided that the pain department could help me with this problem. I talk to them and got a weird answer: we wont help because surgery department prescribed it first, hence they have to take car of the problem. I came back with this answer and got an even more weird answer: "you are taking to much valium so I am giving you 40 pills and that it!". If she wasn't willing to help with the spasms triggered by the expansions, then I couldn't simply continue to do it. One day later I called the secdretary to let her know that I must stop the expansion (at 310 ml... I will be maybe a very small A, and was a B cup). Then after a week when I took only very sporadically the valium like 1/2 pill every 2 days) I began to fill very weird... I lokked online and found out that I must not stop right away the valium w.o medical help... so I sent a long email to my GP (not my PD considering how she talked to me the last time), asking for help. She is helping me with a schedule top taper the valium. W/o her, I am not sure what would happened, as from what I understand it is quite dangerous to stop w/o a real and slow tapper.

Today I got my surfery date: January 28th... 2 months from now. In the midtime, I am still tapering the valium which is good, but, according to my PT who help which the lymphedema, I have some lesions on the right side (have been putting some antibio crem since 3 weeks, looks like a pimple which doesn't goes away...), my breast are VERY hard (like stone), and my skin instead of getting more expanded, is getting tighter. I explained all these problems and would like an earlier surgery date, but... the secretary is going to talk to the nurse/doctor (?) but,I am at loss: I was literally accused to abuse valium (I always took actually the indicated dose), I have been requesting (begging!) to exchange the valium w/o help. I received a sentence by having a last refill of 40 pills and NO help or support to taper it. This has pushed me to make one only decision: to stop the expansion where I am now. This is NOT what it was scheduled to be. I always told her I wanted to be as I was: a B cup not a A double negative (very very small A...), which will need to have some prosthesis if I want to fit in my clothes... I was so (still am) upset with the way I have been treated that I took this decision. In any case, w/o antispamodic, I just cannot tolerate the expansions...

So, they are supposed to call me back, but as of now I have the surgery date for January 28th, and I do not know how I will do if the thighness and these small lesions continue. i am feeling w/o support, having to do the valium tapering pretty much by myself and this is not a nice side-effects I can tell you, and this on top of the PMPS , the depression induced by the still high dose of valium, work, med side-effects, etc... anyway, I apologize as it sounds so much as winning, but i just don't know what to do anymore.

I touhgt i would have done the most difficult by doing the mastectomies, but I can tell you, I feeling so alone right now and frustrated by all this. I hate being pushed in decisions that don't make sense and this is exactly the actual feeling I have.

Please, help... any suggestion, idea, anything, please.... I am not at my best and really need some help....