December 28, 2009
I haven’t sat around this past year moping and feeling sorry for myself; I don’t allow myself to do that. Being a pro-active personality, if something isn’t right with me, I try to find the source and deal with it.
I attend our local monthly cancer support group. I think I am more of a listener than a participant. I know as a fact, wherever I go and whatever group of people I am with, someone’s story will be more difficult than mine; their suffering is more intense and perhaps their prognosis is not as hopeful. So it is better to listen at group and be supportive for those whose lives are in the balance.
I “lurk” and occasionally contribute to questions on the Leukemia and Lymphoma Society’s discussion board. There is a “how I survived cancer” thread. This discussion includes many of the other types of blood cancers and members ask specific questions concerning treatment protocol. After lurking for quite a few months, there are regulars on the board who dominate and have big egos (isn’t that funny detecting personalities on a discussion board?) so it’s taken away my desire to discuss or contribute.
Surviving treatment and trying to understand why some of us have such a difficult time recovering psychologically, I look for web sites that discuss survivorship. I am finding some sites that offer pod or web casts of conferences. Generally, these conferences are offered by research and teaching hospitals funded by organizations like the LLS. Listening to them has helped me know others struggle, too, in accepting and adjusting to living the rest of their lives with the fact they had cancer – and for many they wonder will the cancer return. Every survivor wants to hear the “c” word, CURED. (Remission and cured are two totally different words in the cancer world.)
It was through a brochure the LLS sent that I found the Cancer Care web site. This site is an on line support group and before you can comment you must fill out a simple application, state which discussion thread you’d like to participate in and a licensed social worker evaluates the request and either denies or accepts the person. I was accepted to join the Post Treatment Survivorship thread.
This has been a very lonely journey for me. I visited the social worker who facilitates our local cancer support group but I wonder if she understands the confusion and questions survivors have. She is a great listener and very compassionate and whether or not she understands us, we have her support.
I felt I couldn’t expose my worries or fears or concerns with others because I am in complete remission and I should be grateful and ready to get back to living; my treatment is finished and I am cancer free. I hid my thoughts and emotions from my husband and extended family. There was only one person I could be totally honest with, my friend Wendy, a woman I was introduced to through my sister-in-law. Wendy and I correspond often through email.
Wendy has a Caring Bridge blog, too. She is open and transparent about her struggles with cancer. I wrote and asked her if I could be honest with her regarding my personal struggles. Of course, being who Wendy is, she said yes and was willing to share with me her insight and counsel. She (and her personal counselor, “Pat”) are an anchor for me during this stormy time. She is a friend and because of her I don’t feel completely alone.
From what I am reading on line and how I felt, loneliness seems to be experienced by many survivors. When you are diagnosed with cancer and all through treatment, whatever it is or however long it takes, there is an upswell of support from family and friends. If you don’t have support from your family, immediate or extended, the medical community is bustling all around you and your life is from one appointment to the next or transfusion to the next or treatment to the next. I am finding when you are released and go home, everything else leaves you, too. Suddenly everything and everyone that held you up is gone and you are left wondering what to do with yourself and all the thoughts and all the fears and all the worries and all the – I could go on and on.
So last week I exposed myself, I let my wall of strength fall down. Through one of Wendy’s most recent postings she used the words “authentic” and “okay.” I cried when I read those two words. I need to be authentic and it is okay to acknowledge I am not healed, but healing.
“She said it’s because I’m not healed yet. I’m healing. I’m in the process. It’s very important to me to be authentic in my words and faith, so since the process isn’t finished yet, I can’t say the words yet. She told me there’s nothing wrong with that. The Lord will let me know when the process is complete and it is ok, authentic, for me to say it. I need to remember, Jesus is a redeemer, not a condemner. If I’m feeling condemned, it is not from the Lord.”
So through her indirect encouragement I shared with my husband all email correspondence with my Cancer Care social worker. He said to me, “Cyndi, Caring Bridge was an outlet for you. I think you should start writing again.”
In being authentic with all of you, this isolation will go away. The storm will subside. I am no longer alone.