You’ve been told you can finally go. They just open the door one day. The door to the place you have been living, dwelling for 5 years. A dark, dank place that has the threat and smell of impending death always around you. Where death seems certain and healing uncertain. Where physically you hurt, you suffer. Mentally and emotionally you are in anguish and heartache because you don’t know how much time you have. You don’t know when, or if you will die. You weep because you can only think of your children. That is what this place, this prison has been for 5 years.
Then just like that they say it’s over – you can leave. I don’t know which way to go and I have to find my own way back. You are so used to this prison, you are familiar with this place. But I don’t have to stay here anymore. I walk out tentatively, slowly, full of anxiety and fear. Always looking over my shoulder because they said to be careful and watchful. It can come back to get you. Take you back to the terrible place. They said it usually does come back. With you guys it usually does. But we don’t know when.
Do I tell people I’m out? They will be excited and happy. They will want to know it’s all done. But I’m worried they will ignore the warning that it may come back. It almost always comes back. I really don’t think I will be free for too long. So I’m not sure I should let my guard down. But I want to go and leave this place. I start on my way but I tiptoe and walk very, very carefully. Peering around every bend and my heart is pounding with fear and I break into a cold sweat – is it there? It feels so near. For a time I’m paralyzed on my journey, now held prisoner by my own self.
I can’t move forward. I cannot. It is safer to stay put. It is safer to just sit right here. I will hold my husband and children to me, and if we just sit here together nothing bad can happen. Nothing will separate us. None of us can go out and die. We can all grow old together. My children will not lose me if I stay still. Yet I sit with my heart conflicted.
I am free to go but I don’t know how. I know how excited I should be. But if I let myself be too excited, to feel safe, It may find out and come back for me. If It comes back for me, It comes back for my children because they will lose their mother. This thought. It freezes my spirit in fear. My children losing me. It is at the core of it all.
I do manage to make some distance and find a home with my family. But my old prison is nearby. Sometimes I swear it’s as if It is closer to my house today than it was yesterday. Sometimes I feel sick and have physical problems. My heart screams with fear. Maybe I should start just walking back to the old prison and get it over with. It’s here. I know it. It’s back. But God’s helpful hand comes and calms me. He guides me back to my home. But my soul and mind is still filled. Filled with a heavy, deep and almost unbearable weight that is fear.
I try to start to rebuild my life. I have been given a second chance. I must not waste it! Things are feeling better, happier. I start to work, take care of my children. But the prison is so close, it drives me to distraction. I stare at it. Ruminate over it. All the while I go about my life. Grateful to be here. Alive.
I start to feel I will tear out my hair. I live in constant fear of that horrible place. Of that disease. That place that will rob my children of their mother.
Then one day I meet a very kind and wise woman. She has helped so many move away from It and the prison. We start to talk. I tell her all of the fears. Of the nightmares. Of the places I don’t go and things I don’t do because I am afraid to take the chance. I could die if I go out. Then my children won’t have their mommy. They will forever have an emptiness that will never heal. They need me.
I tell her with guilt in my heart and tears down my face I am so happy to be free and released. But the fear of It’s return is eating me alive. Bad memories hit me in the middle of the day and shatter me to pieces. In the middle of the store, at work, watching T.V. I cannot breathe. I cannot breathe. Fear and memories are a deafening rush in my ears. I have been out, I tell her but I am stuck. Frozen. Scared. My life is being consumed by fear, guilt and weariness. I talk to her for days and weeks. I tell her things I have not told anyone. Things so painful to my heart. She listens compassionately and starts to help me.
She tells me I have to go back and look into that prison. I go. I don’t want to but I must. I peer at it through the fingers covering my face. It all hits me like a big black tidal wave and knocks me flat. I see and smell and remember too acutely as the tidal wave pours over me. All the dark, all the fear, death, and trauma. The trauma.
It was hard to say the word out loud to my friend. She wanted to know. It came out through a whisper and tears. As I said it, it felt like a million little knives were stabbing me. Trauma. I think that’s what I went through. I couldn’t see it when I was there. I was too busy trying to get better, to stay alive, to get out.
It is hard to face and admit that word, and allow those experiences to be faced. I don’t want to seem ungrateful or complaining. Here I am alive! Living! I am happy I got out. But yet I struggle.
My wise friend said to me that we are all happy you are out and alive. That doesn’t mean you have not suffered while you were in there. Those experiences don’t leave because you have physically left that place. And the friends who were suffering with you. They did not make it out. That also hurts you, and you grieve for them. But it also leaves you feeling isolated and alone.
I look at her and smile and want to hug her tight. I say I don’t feel so alone anymore. She asks me about the traumatic things. I don’t want to talk about it. It sounds like I’m complaining. But she encourages me in her soft quiet way. I cry and sob and talk my way through some of the traumatic experiences, the bad memories, the nightmares, the grief over loss of friends. I go home and as she suggested, write out more things. I start to feel lighter. When I look out the window I know for sure the ground must be shifting or moving in some way because the prison is so far away I have to squint to see it.
I go again to see my wise friend. She is teaching me that despite my fear I have been doing things. I have been living. Three years have gone by since my release and even though I have been filled with terror and fear, she points out that I have been working, playing, volunteering, and going on trips with my family. Going out with my friends. And nothing bad has happened to me. That may seem obvious to her and most others. But it was not to me. But I see that now it is true and more fear lifts from me.\
I have more room in my spirit for better things since the trauma has been recognized. Acknowledged. Addressed.
After I was diagnosed with stage 4 colon cancer in April 2007 I was in treatment for 5 years. Death sat on my shoulder, was my shadow that whole time. There were times I thought I was going to die and I was so heartbroken, angry and inconsolable in my spirit because my kids would not have their mother, their suffering would be tremendous, I didn’t want them to hurt. I wanted to be there for them. I did not want to leave them. I would lay at night next to my son or daughter and just stare at them and cry as they slept. How long will I be here? How far will I get to see them grow? It was like have a gun pointed at your head for 5 years. Then “poof,” the gun was gone.
I am so grateful for everyday, every minute I have on this earth. However, I have come to realize that doesn’t and can’t mitigate what I experienced the first 5 years of treatment and the following 5 years of coming to terms with that. Being on the survival side of things is a new journey and definitely one I prefer to the cancer patient one, and I have to acknowledge that.
I am so grateful to my oncology counselor Maggie who helped save my spirit and my mind from self-imploding.
Flashbacks, fear and anxiety still come out of nowhere but they are less frequent and I can recognize them now and learn to ride the wave of it and breathe deeply as it passes. Scan time I am a mess but I believe that is part and parcel of anyone with any cancer diagnosis and I don’t beat myself up for “not getting over it.”
The farther I go the freer I feel. I continue to move forward and enjoy life. By going to counseling, praying and many moments of deep breathing I am doing so much better. Fear does not rule my whole being, my whole life as it once did. It is there, it is a part of my experience. However I am now master of it instead of it mastering me.
To get matched with a survivor or caregiver volunteer, call 877-HOPENET (877.467.3638) or visit cancerhopenetwork.org/support