Let me start by telling you a story about a writing workshop I attended at Sloan. The panel included writers and cancer patients. One woman talked about her experience with breast cancer and pretty much summed up my feelings when she said, “I thought I was going to die, and then survivorship happened.” Let me give you her whole statement. It really stuck with me so I remember it:
“I was told I was terminal. That I wasn’t going to survive cancer. I was prepared to die. I had accepted it. I wrote the letters to my daughters. To my husband. I did a few of my last wishes. Then the oncologist came into the room one day to tell me the chemo was suddenly working. That he wasn’t going to stop treatment and that I probably just needed a few more. I was pissed. Forget pissed, I was ANGRY! My entire state of mind was forced to change. I had to get used to living again. And it was hard. It still is very hard because I don’t know where I belong.”
Hearing that, my mouth dropped because she had just described exactly how I feel about survivorship. And I stood up and applauded her — the only one from the panel I had done that for. For the first time I felt connected. I was relieved I was not going crazy after all.
Many non-cancer people don’t understand the complexity of survivorship after cancer. They view it as a gift, a blessing that many are denied. We are supposed to embrace this. Celebrate it. Be super happy about the fact that we were among those lucky ones who “beat cancer.” (I never liked the military and celebratory metaphors.) We are supposed to be transformed for the better, otherwise we are probably doing survivorship the wrong way.
So, these people, who have never walked the cancer path, apparently know how to do survivorship.
What I would say to these people is, no, I am not ungrateful. None of us who survive cancer are ungrateful. In fact some of us feel undeserving of such a gift because so many people die from metastatic breast cancer. I personally have questioned “why me,” but try not to beat myself up too much, because hey, I’ve now got survivorship to deal with.
I get frustrated with what’s expected of me. Sometimes I feel I am being forced into being someone I simply cannot be. I can’t be who I was before cancer because I am not done with cancer. Remember, this body I have isn’t going anywhere. This is why I have a really hard time separating cancer from me, so there isn’t such a thing as “getting over cancer.”
I also can’t be this transformed, enlighten person who is full of positivism. Now, don’t get me wrong, I have reached a certain level of enlightenment. I see everything rawer. I now see some people who I thought of as my friends who aren’t friends in the same way anymore. Maybe they just couldn’t adjust as fast as I had to — or at all. And, during my survivorship, even a few family members aren’t really as understanding as I would like them to be.
Survivorship is so hard for me because I find myself bouncing back and forth between two worlds: the cancer world and the non-cancer world. I’ve lost my sense of belonging in addition to also losing my sense of denial. Part of this difficulty I have is related to the lack of understanding and acceptance of my new reality by the non-cancer people. It makes me feel isolated and rejected.
I almost feel like I need to be multiple people in order to adjust to each world because I want to avoid conflicts and arguments. I am tired of having to explain myself over and over to questions like, “aren’t you done with cancer yet?” It is tiring.
My behavior — where I am — has nothing to do with being weak or being intolerant, it has to do with adjusting to a new life. A life I didn’t get trained to deal with in advance. And seriously, there isn’t really a way to prepare for this life in advance. We only figure out how to deal with cancer when it happens. No one wants to deal with it or even think about it otherwise.
So here I am. This is the only way I know how to deal with my cancer: If I want to feel sad I will. If I want to scream, I will. If I want to be realistic, I will (no, I am not calling this being “negative” as many people portray it as being.) If I want to feel scared, I will be. If I want to kick and moan, I will. If I don’t want to be surrounded by those who don’t understand where I stand, I will choose not to be. If I want to make drastic changes due to my new life, I will. We, cancer patients, have the right to feel anything we want. We have to allow ourselves to experience all the emotions that come with a cancer diagnosis. We are also entitled to do our cancer the way we want.
I’ve sensed some distance from people I know. It feels as if it gets worse as time passes. Some friendships have changed. I understand I have a dark world and not everyone can cope with that. A lot of the support I get I receive from other patients. There are some people in my life who I appreciate a lot, close friends and my guy who suffers with me. I am forever grateful for their support, patience and understanding.
Maybe one day the people who don’t get it will understand what it is like being stuck in between two worlds. I just hope it isn’t cancer that teaches them.