I thought I would share with you all my experience with the American Cancer Society.
When I found out I had Stage 2 Invasive Ductal Carcinoma, it was mid-August, 2010. I was inundated with papers and "information". One of the papers I filled out was a request to the ACS for assistance (counseling/mentoring) with my plight. I went in for my double mastectomy on September 23, 2010. Not a word, call, card, nada, nothing from ACS. No visits in the hospital. No moral support. After I got home it had been 6 weeks since I requested some help. So, I called them and asked why my request was not followed up on. I also needed some special supplies for my post-surgery. My daughter drove me to the local ACS office where I picked up some supplies and filled out yet another form for services. Two weeks later, still nothing from them. So, I called again. Yes I did. I asked why I have not received even a call or a letter. The head honcho/director apologized out the wazoo. About a week later I got a call from a woman who let me know she was calling long distance. Apparently she had a single mastectomy 30 years ago! She was absolutely NO HELP! Then, a few days after that, I got a call from a lady in town who had her single mastectomy 20 years ago! I was kinda hoping to get to talk to someone who underwent the procedure in THIS millennium! I also wanted to speak to a woman or a few women who decided against reconstructive surgery. So, THAT never happened. I had no idea what to expect before, during and especially after the surgery. I had to learn how to hold my breastless torso while I walked, after all, they were huge 44DDs! As usual in my crappy life, I had no one to give me any support. I had to clean my drains several times a day and my daughter helped me wrap my incisions with 6" wide ace bandages. My daughter isn't the most tidy person and I found myself washing dishes 3 days after coming home. She also felt the drain cleaning thing was sickening, so I was pretty much on my own with that. How could this happen to me? I never smoked. There is absolutely NO family history on either side of any kind of cancer. The pain was unbearable. I was all alone. I felt like damaged goods. I felt hopeless. Did the ACS drop the ball and fail epically? Or was I just expecting too much? Why can't I think like a pessimist?
I lost my mother to breast cancer early this year, and so I feel something of your pain. I'll only say this: We need some resource more central than the ACS to help people in your situation. This is one of those roles that should fall to government, or at least funded properly through goverment-- not left to volunteers or non-profit organizations to jump in and cover.
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