Since getting my diagnosis over three months ago, I have been navigating my way through the world trying to figure out what support system I needed to get through this cancer journey. Just last Sunday, I finally found the support that has been very helpful. Her name is April Carver. She is a fictional character in a TV show called, "Chasing Life" who was diagnosed with leukemia. I felt I could really relate to her. And... she does not talk back, suggest unsolicited ideas, impose opinions on me, or use fear tactics on me.
When I first found out I had cancer, I texted a few friends with this short message, "Lab results just came back- cancer." Just like that. Then I went into my own bubble. My friends wanted to know more but I really did not know anything at that point. I did not know what to think nor feel. I was shocked. It was like the world stopped. And the world was waiting for me to tell it to keep on turning. The problem is though I did not know how I wanted it to turn. I just figured it out as I took the next step. Baby steps. Sometime my steps surprised me because they led me where I would have not gone.
After getting over the initial shock, I realized that I needed to figure out a support system to get through this, whatever that looked like. I withdrew from my friends who were pregnant. Sure, I am happy for them
but it is difficult at this time as I struggle with the fact I cannot
ever be pregnant. I decided to reveal the news of my cancer on Facebook. Friends from far away or nearby immediately stepped in to support me. New and old friends emerged. I got a good number of friend requests from people I did not know. Some friends retreated. Friends who survived cancer came forward with meaningful nuggets of wisdom. Reactions and responses varied. I was surprised most of the time. I was overwhelmed at times. I felt appreciative at times. A woman who is battling cancer commented, "No one knows what the right word to say to you and they take everything so personal if we say or did not say anything. Dealing with family and friends are probably difficult than the disease itself. It's gonna be an emotional roller coaster, that's for sure." Some days, I just want to hide out in my own little bubble and shut out the world. I always want to take care of people. I feel like I have to take care of others by responding to their messages or assure them I was not gonna die next week. I have learned that I really need to take care of myself during this time. I need all the time and energy I can get to beat this cancer. I do not have time to deal with people asking me why I am not talking with them. Be ready to listen when I need to talk. I will ask for help when I need it. I rarely ask for help and when I ask for help, I seriously need help like I asked for help with meals following the surgery.
Interestingly, many friends always seem to suggest unsolicited idea to solve a problem I was having at the time. I understand it comes from them wanting to feel good for giving me an idea. Believe me, I have not left any stone unturned. If you know me, I do research to no end. All avenues have been explored. So when I hear an idea, I would feel shot down, thinking, "Already looked into that one."
I was trying to figure how to manage all that PLUS figure out how to deal with this cancer. I craved connection with other women who had endometrial cancer to help me process or at least survivors of any cancer. I signed up for a mentor through a group who has been pretty helpful. I joined several online support groups in hopes they would help me process. And I learned from the whole process that the support groups do more harm than good. Sadly, they do.
The first support group I joined... none of the women knew what to do with me. All of them got endometrial cancer after menopause. I left quickly.
The second support group I joined had a woman who was anti-hysterectomy. She was telling me to go to her oncologist because she won't have surgery. She's been on megestrol and increasing dosage constantly for the past two years. I hated being on megestrol and was RELIEVED to stop yesterday. This group was in support of staying on hormone therapy for as long as it takes to get pregnant even if the hormone therapy hurts their bodies like it has for me. And the group continues to look for reasons WHY they have endometrial cancer making me wonder about what I did wrong in the past that led to the cancer. I left this group.
I joined a support group that was moderated by a social worker. I thought that one would be safe. Not so. A woman in there said that God had plans for me when I spoke of my fears of hysterectomy and that I should jump right on board for whatever my oncologist tells me to do. Hmmm. In the same group, a woman was expressing her anger for having poor treatment in her small town in Tennessee. I thought the support group was the right place for her to rant. I did a little ranting myself. I could relate to her story because I felt I was getting not so great treatment from Dr. Diaz-Montes. I feel fortunate that I could travel to New York City to work with Dr. Jewell. Another woman got upset with her for ranting. The social worker kicked the ranting woman out. Huh? I thought it was a safe place to rant. Later, I announced my surgery. A woman told me that not to have the surgery until I talk with a woman she knew that is in her second trimester of pregnancy with her endometrial cancer in remission. Well... again. I have turned all stones. I have become withdrawn since then with this group.
I joined another support group. I got religious stuff suggesting that God intended for me to suffer with this. Hmm. If someone was to say to me ten years later that my blog has helped so many women, I would feel touched that my journey was helpful to others. That is for LATER. I really do not need to hear stuff like, "God intended for you to get this cancer." I also got posts that said it is my fault for getting cancer. Really? I left that group.
I joined once another support group. And that group was full of fear tactics. Made me fear my cancer. Made me fear my surgery. Tonight I was about to freak out. A friend who has cancer and had hysterectomy intervened by calling me on FaceTime. She commented that she found that support groups were NOT helpful to her either. I left that support group.
What really helped... HysterSisters. Their website is full of information and tips. I could opt to join in their discussion forums but I haven't found those helpful for the same reason I did not find support groups helpful. I found their pre-op and post-op resource pages very helpful.
I am going to wrap up my day by watching another episode of "Chasing Life" because it is the safest type of support for me. I am finding parallels between her journey and mine. She struggled with her diagnosis at first just like I did. She did not want to tell people at the beginning. She felt obliged to take care of others. People overwhelmed her with their ideas of what she needs to do. She postponed her treatment in order to understand what she is about to go through. She finds meaningful connection with people who has had cancer. It feels like she totally gets me and vice versa.
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