It's been awhile...I know....and it was not my intention to take so much time. While I felt like I had so much to write about, I also felt like I had nothing to write about. I became overwhelmed with the amount of "stuff" I wanted to say! This past week, I received an email from the Susan G Koman Foundation. In the email, it linked to a study done by the Cancer Support Community's Research and Training Institute. The study showed that women diagnosed with breast cancer felt that their social and emotional issues were not adequately addressed by the professionals who treated them. Wow! A flood of emotions came rushing back to me!
On September 28, 2010, my doctor from the breast care center that I had been going to for my annual mammograms for several years delivered the news that I had breast cancer. Due to the nature of it, she recommended a double mastectomy. She asked if I had a surgeon in mind to do the surgery. I did and that was the last time I talked to her. I was passed off to my surgeon who performed the surgery on October 14th. After my follow-up appointment with him, I was passed off to an oncologist. And, then after a year's time, on to a plastic surgeon for breast reconstruction. Each time, I felt like I was starting all over again; telling my story, giving details that I felt they should already know, and feeling like the whole process was very disconnected.
This study described a Survivorship Care Plan (SCP) that is a tool that was introduced in 2005 and recommended for all people diagnosed with cancer. However, in a study of 1,000 women diagnosed with breast cancer, 90% never had an SCP. Plus, 87% of women diagnosed with breast cancer described experiencing moderate to severe social and emotional distress after their diagnosis, surgery and during treatment. I was not given an SCP but I have no doubt in mind that much of the depression and emotional distress that I experienced after my mastectomy and during the weeks to follow could have been eliminated had I been given one!
While in the hospital after my mastectomy, I was flooded with love and support from family and friends. I'm sure that is what got me through those days of recovery during the hospital stay. While the nurses and my surgeon did a fine job of taking care of my physical needs while in the hospital and of course, I was asked the question "how are you?", no one really came to talk to me about how I was doing. I left the hospital feeling scared about the future and physically mutilated.
I remember on our way home from the hospital, we stopped at the pharmacy so Dennis could run in and get the pain meds and anti-biotics that were prescribed to me. I called my mom to tell her I was on my way home. The minute I heard her voice, I broke down. I recall saying "I have no idea why I am crying." And she said, "I do....you feel violated." That was it. I felt violated and I was completely unprepared for these feelings. After I got home that day, if I was not sleeping, I was crying.
One of the main reasons I think I was unprepared for these feelings is that I never thought I had any kind of attachment to my breasts. The minute I received the news that cancer was found in them, I wanted them gone. So why, after they were gone, did I miss them so much? I was not ready for how I would look and I was not ready for drain bulbs to be hanging out of me for two weeks. I was not ready to spend the next month on the phone daily just trying to get answers....when do I need to see the doctor for a follow -up visit (yep - BIG suggestion for anyone having any kind of surgery...don't leave the hospital without a follow-up appointment scheduled with your surgeon!), when can my drain bulbs come out, when will I get my results, when do I see the oncologist, do I need treatments, and on and on. Phone calls were all made to a number of different receptionists and nurses. It would have been divine to have one person - who knows the process - who I could call to get answers and to just generally talk with.
My thoughts have been going back frequently to those days, asking myself how things could have gone better. What could have been done to decrease the social, physical and emotional distress at the time of diagnosis, surgery and the months following? Why aren't women who are diagnosed with breast cancer being offered the Survivorship Care Plan? While I was somewhat relieved to hear I wasn't alone in my experiences, I was also very saddened to hear that it is common. I don't want anyone to experience what I did. So, right now I am brainstorming ideas on what I can do? I feel that my past experiences should be able to help women diagnosed in the future.