HER2 Support Group Forums - View Single Post

Chelee · 07-23-2006, 03:04 PM

Sarah, I wish there was a Dept. close to each hospital where you could go pay someone like Tom, Joe, Al or other men like them to go with us.

Rent a Advocate! lol Oh how I wish.

What bothers me is my husband HAS taken me to almost everyone of my appts since this started. I wanted the extra pair of ears. Plus he has always been good about asking question that I forgot too. He is so different then me. He always looks so serious and doesn't play around and expects answers to his questions. If they don't fully answer a question...he will keep it up until they do. (I dont' think they like it.) But too bad...I sure can't get any answers. But even with him there its ALWAYS been like pulling teeth. My husband has always said "Whats with these people...what does it TAKE"!! He gets so ticked off its not funny. (Not in their office...when we are home.)

So far nothing has worked with these people at every stage of this nightmare. My husband is firm, direct and to the point...and I am always smiling and being super nice. We are SO different in our apporch. My husband tells me I am too nice. He doesn't want me to be nasty or cussing them out...but to be more serious and firm with them. More like Tom has said about being FIRM. Men think different and usually get a much better response then us women it seems to me?

I never us to like to believe that saying that this is a mans world. In alot of ways it is. Men are treated so differently and taken much more seriously then us women in certain situations.

They have even PROVEN that men are taken much more serious if they go into an emergency room with complaints about chest pains. They are taken right in and dealt with where as women they will tell them its anxiety, or PMS, or they are menopausal....they aren't taken as serious. They proved more women DIE because they aren't treated the same way men are and they said this has to change. Well I am starting to thinks its in more areas of the medical world then just cardiac issues.

I am exhausted dealing with just living with my DX...let alone having to fight to find anything out about myself. We live, eat and breathe bc...isn't that enough. I know one day I called this nurse practioner about THIS problem I am having and I am NOT a big crier, and I hate crying in front of anyone. Well I was telling her what was going on...asking her what I could do...how worn out I am. Then I started to explain how I come home from ALL these doctors appts and HAVE to spend HOURS on my laptop to diagnose myself and all the words on my PET/CT scans. I said its EATING UP all my free time I have...I said my time is very important to me now....why should I HAVE to spend hours doing this when its the doctors job to explain these things that are so simpe to them. Then BAM...I just broke down and started crying. I was so embarassed. I told her I should NOT have to do this. My doctor should be explaining my PET/CT scan results with me. I said I come home and look all this up and I am likely to read more into it then I should. She agreed and went to speak to my doctor...but nothing has changed as always.

They say you need to keep a positive atitude...but they sure make it hard when they won't tell you a darned thing. Its makes you worry more!

You would think these doctors would have more compassion for someone with a DX like mine. I feel like a piece of gum on the bottom of their shoe. I have never been treated this way in my entire life from any of my doctors. This has been unreal.

Thanks Sarah.

Chelee

07-23-2006, 03:04 PM	#18
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Sarah, I wish there was a Dept. close to each hospital where you could go pay someone like Tom, Joe, Al or other men like them to go with us. Rent a Advocate! lol Oh how I wish. What bothers me is my husband HAS taken me to almost everyone of my appts since this started. I wanted the extra pair of ears. Plus he has always been good about asking question that I forgot too. He is so different then me. He always looks so serious and doesn't play around and expects answers to his questions. If they don't fully answer a question...he will keep it up until they do. (I dont' think they like it.) But too bad...I sure can't get any answers. But even with him there its ALWAYS been like pulling teeth. My husband has always said "Whats with these people...what does it TAKE"!! He gets so ticked off its not funny. (Not in their office...when we are home.) So far nothing has worked with these people at every stage of this nightmare. My husband is firm, direct and to the point...and I am always smiling and being super nice. We are SO different in our apporch. My husband tells me I am too nice. He doesn't want me to be nasty or cussing them out...but to be more serious and firm with them. More like Tom has said about being FIRM. Men think different and usually get a much better response then us women it seems to me? I never us to like to believe that saying that this is a mans world. In alot of ways it is. Men are treated so differently and taken much more seriously then us women in certain situations. They have even PROVEN that men are taken much more serious if they go into an emergency room with complaints about chest pains. They are taken right in and dealt with where as women they will tell them its anxiety, or PMS, or they are menopausal....they aren't taken as serious. They proved more women DIE because they aren't treated the same way men are and they said this has to change. Well I am starting to thinks its in more areas of the medical world then just cardiac issues. I am exhausted dealing with just living with my DX...let alone having to fight to find anything out about myself. We live, eat and breathe bc...isn't that enough. I know one day I called this nurse practioner about THIS problem I am having and I am NOT a big crier, and I hate crying in front of anyone. Well I was telling her what was going on...asking her what I could do...how worn out I am. Then I started to explain how I come home from ALL these doctors appts and HAVE to spend HOURS on my laptop to diagnose myself and all the words on my PET/CT scans. I said its EATING UP all my free time I have...I said my time is very important to me now....why should I HAVE to spend hours doing this when its the doctors job to explain these things that are so simpe to them. Then BAM...I just broke down and started crying. I was so embarassed. I told her I should NOT have to do this. My doctor should be explaining my PET/CT scan results with me. I said I come home and look all this up and I am likely to read more into it then I should. She agreed and went to speak to my doctor...but nothing has changed as always. They say you need to keep a positive atitude...but they sure make it hard when they won't tell you a darned thing. Its makes you worry more! You would think these doctors would have more compassion for someone with a DX like mine. I feel like a piece of gum on the bottom of their shoe. I have never been treated this way in my entire life from any of my doctors. This has been unreal. Thanks Sarah. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.