The best way to describe my struggle with survivorship is by calling it being “stuck in between two worlds.”
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.
The small c 
Everyone has the dark side. Bring love to there and you will dance cheerfully again. :))
This is one of those things I am still trying to figure out how to do.
Thank you for commenting.
I’ve always felt a bit like a freak so it seemed a natural transition to become a ghost. But it’s harder than I thought to be half there. For me, the trick is to stop feeling bad about being different or that people are tired of my story. In fact, the idea of studying why it’s culturally acceptable to be blind to certain others sounds interesting.
You know Rebecca that people are missing a lot by not knowing you and it might be that a life with fewer but closer friends ain’t so bad. Or maybe that’s just more crappy advice so feel free to tell me to piss-off.
Scott, my problem has a name: expectations. And you are right, we need to stop feeling bad about people not understanding what we go through. This does affect the relationship though since we need to stay true to ourselves. I agree life with fewer closer friends is better than having unreal friends.
I would never tell you to piss-off!
Rebecca, don’t think it’s a problem to have expectations. Are you expecting people to treat you like they used to? Or maybe see life like you did before meeting death? For me, there’s a bit of liberation having gone right to the end but who wants advice on that?
Hardest part now is carrying knowledge that makes my life harder and trying to figure out to use it rather than be damaged by it. Do I change? Will that diminish my experience? Am I too sensitive to the shallowness of comments by people who were never really deep to begin with? Maybe the problem is having endured months of strong medicine only to get weak-assed comments after it’s over?
The hardest thing here is knowing I can’t sustain these shitty feelings and have to change. But on my own terms or I’ll end up feeling weak or pushed into it. Been thinking about reconciliation and need to get my psychologist to tell me more about it. My fear isn’t about losing control but giving it up for some kind of false comfort.
I think the initial process of having expectations is not a problem, but when people don’t meet them, maintaining those expectations becomes counter-productive and self-destructive. I think what I am having issues with is their lack of adjustment to my situation and lack of flexibility. For example, before cancer, I used to hang out late at night with friends, but I can no longer do that. I feel tired all the time. So instead of them calling me an old lady, for example, how about showing some level of understanding that what I went through was hard on my body and perhaps it will take a longer time for me to be able to do things I used to do.
I really liked the word you used, “liberation.” I have felt that. The other day someone said to me that my world is too dark and it scares them. The word he used, “dark” made me reflect. I thought maybe we used to live in a dark world before cancer, not implying cancer has taught us anything although it has altered our life on so many levels. Your word liberation also suggests we have been exposed to a reality that most of us try to avoid when trying to live our healthy lives.
Another important point you brought is how we manage to live with the knowledge we now have.
I fear giving up my TIME and energy for someone who doesn’t want to commit to being flexible and understanding to my situation. I am afraid some of these people will no longer be part of my life and I am OK with that. I am not sure I am looking for reconciliation as much as I am looking for acceptance and the freedom of letting go. Sometimes people and situations never change so we need to identify when enough damage has been done so that we let it go by walking away from it.
I hope your therapies are helping you. I say when you are ready to change it will happen without even you realizing it. It needs to happen at your own pace.
Rebecca, reading about change right now. Noticed I was resisting letting go of some of the junk that came with being disrespected by the cancer robots. I’m angry and want to hold on to my right to be angry but I want it to make me stronger, not necessarily meaner or wiser–well maybe a bit more dangerous and less polite:-)
I’ve heard the darkness comment. The other day my daughter brought up how my “complaining” was hurtful and unacceptable to her and this really made me angry and feel abandoned / isolated. You feel the same with your friends? Thinking about it though I realized that she lives in a world where she can control what comes into her life. With cancer, we don’t have that choice and I think people don’t get that. Tried to explain to her that I can’t turn it on and off but to her it’s a bad habit, changeable attitude, impoliteness, whatever.
So here is a change I’m not sure will help anyone–all that’s needed is to “recover” from a very powerful experience and go back to being, what? Acceptable? Screw that.
Scott, I am sorry you get these reactions from you family. It is frustrating.
The thing is no one can control anything that comes into their lives. Some people may think they can. I certainly never thought that, even before cancer. Denial lives in the world opposite to ours. Denial is a pretty strong force and makes people do/say all kinds of things even when the proof is in front of them. Wondering if this is the reason why there is such gap and lack of understanding.
Your suggestion of a “change” sounds great!
Cancer robots, ha ha!!
Rebeca hay tiempos que nos vemos en esas 2 vías de ideas pero debemos confiar siempre en Jesús autor y consumador de fe
Tu lo has dicho Poly, hay diferentes situaciones donde nos encontramos entre dos vias. Esta es un poco dificil porque siempre pensamos en protejernos primero, y a veces esos sentimientos no nos dejan vivir en su totalidad.
So many things for us to learn! Those who have or have had cancer understand a different thread of life!
Absolutely. This is another world. I am glad we have each other to count on for the support and understanding. We are not alone.
I hope you are recovering nicely.
I worry sometimes that I’m a little too us vs. them (cancer patients vs non patients). But yes, I’ve resigned myself to realizing that sometimes, that is just the way it is.
You’re not alone. There is a huge gap between cancer patients and the non-patients. Cancer def. creates separations and like you mentioned, I am afraid this will always be the case. Two totally different worlds.
Yep. So sick of being asked when I’m gonna be done with cancer, since I’m “done”…. Ugh. Thanks for this great read. xx
I understand they want us to be well and they really believe we will be. But we feel differently about this idea because we’ve been hit. And sadly, I don’t think I’ll ever be “done” with cancer.
Thank you for reading and commenting.
I love this post. I love your honesty. I love your realness. I love the way you write. I hate that you have to go through this.
You really hit the nail on the head with this line :
We are entitled to do our cancer the way we want.
Thinking of you xx
Amanda, you are too kind. I enjoy reading your blog as well. I too hate that you are dealing with this mess.
Thank you for commenting.
Esta es la confianza que tenemos delante de El, que si pedimos cualquier cosa conforme a Su voluntad, El nos oye. 1 Juan 5:14
Que Dios te escuche siempre, Poly. Que nos escuche a todos nosostros que tanto lo necesitamos.
Oh boy, did this post resonate with me. You captured exactly how I feel. Survivorship is rough and tough. People who haven’t been immersed in the cancer world and the survivorship world have no idea how difficult it is to cope if we are lucky enough to be on the “after cancer” side of things. People think I’m a survivor, so I should always be happy, but as you know, survivorship is a struggle. I’m grateful to be alive, but I’m dealing with a lot of aftermath.
Beth, we are too aware now. We know the risks associated with having cancer because we make sure to know them all so we try to “prepare” in some way. I find the “preparing” part never really ends as we encounter different emotions and level of awareness along the way. We also live in this body everyday. How we choose to cope becomes challenging to others because they have not been diagnosed. Personally I am seeking a level of acceptance because at the end of the day this is the only thing that would give me inner peace. I am sure you are seeking some level of peace too. I believe we will have that one day just not sure when.
Thank you for this article, it says so many things I feel, we can not go back to where we were before Cancer, and people expect you to be over it.
I think one of the issues is the level of our awareness is too strong and heavy. Some people enjoy their denial and I don’t blame them. I miss mine. Good thing we are not alone.
Thank you for reading and commenting.
So well said. As someone diagnosed with mets from the get-go, but who has done remarkably well (knock on so much wood), I’ve often felt like I was between worlds, too. I’ve been mulling on a post about it for awhile, but haven’t exactly known how to put it into words. This might be my stepping off point if you don’t mind. Thanks for inspiring. XOXO
Jen, I would love to read your post about this topic. The more I read about it, the less I feel like a weirdo. And coming from someone who has been dealing with a different stage would be so helpful to all of us. Please do write about it.
I always look forward to all your posts.
Thank you for reading this one and for commenting. XOXO
Good point about denial Rebecca. Hadn’t thought of denial from the other side though my counselor did mention I was possibly unsettling people by mentioning the system doesn’t always work. In the last few years I’ve had a crash course in tipping over fantasies like frozen cows in winter and do understand how fragile people’s knowledge of the world is.
Fact is, we do need to escape from this stuff sometimes or go crazy. But how to do it without slipping into what feels like a pretend world–a falsehood?
Need to think about control and thanks for mentioning it. We manage to stay alive and get by on fewer and fewer stories about how it won’t happen to us or it was something we did to keep death away. Guess I better blog about this and see what happens? At least it’s a choice of sorts and writing helps. Maybe trying to live in one world or another is the problem? I should settle down between them and relax.
Glad you liked the cancer robots reference. Was talking to my cardiologist and had this image of her as a cross between one of those My Little Ponies that talks and the people from “The Invasion of the Body Snatchers” https://www.youtube.com/watch?v=WFnSxeDfENk
So much of what you wrote resonates with me. My survivorship and sense of wanting to be done with it, especially since my situation has been first being able to save my breast but having intense chemo and radiation, then recurrence (not mets) that required removal and reconstruction an a radiated breast caused me to have about 8 surgeries. For the past ten years I’ve had so much surgery and treatment and now I think an implant needs to be replaced.
I feel so guilty that I have so far been spared from being in the 30% of metastatic breast cancer survivors who have really been dealt what you thought you were facing. I lost my closest friend to TNBC mets, but at least I am happy that other pathologies have the chance to live so much longer with quality of life. Yet so many are in pain, tired and it kills me that other people have no clue about this disease. I don’t expect those who have never been exposed to understand, but It is like being stuck between two worlds and saddens me that we aren’t getting things done fast enough to stop the deaths and horrible side effects from treatment. At the same time I am adjusting to this new normal and grateful to be part of this community. Thanks for inspiring and opening my mind as I also think there’s more thought provoking ideas that your post has me looking at.
Susan, I am very sorry you are dealing with this mess that is cancer. I am also very sorry about the loss of your friend. I can relate to the “feeling guilty” part. It’s something that is hard to control but we can’t control the outcome of others either.
It is very frustrating for me to talk to people who refuse to understand but I can’t blame them. No one wants to deal with cancer unless they have to. The one thing you mentioned that really gets to me is the little attention metastatic breast cancer gets. I still hear people say bc is very curable these days and people “aren’t dying” from it — just heard this last Friday. I find myself educating others all the time — but we are the only ones who can do it because we are already in this mess. This responsibility can be overwhelming for the patients though. I wish organizations can reconsider their marketing when it comes to breast cancer. There’s still not enough education about this illness and I worry that this could mislead some people when making decisions about their health.
I want to wish you good luck with your next possible surgery for your implants. And people say “some of us are done with cancer,” ha ha! Once diagnosed, we are in this mess forever, I think. So how can we be who we used to be? We don’t stay as children forever or as teens. Life changes as we get older, and sometimes we get hit at a much earlier age — not our fault — so we adjust accordingly.
I am happy you are doing well so far and I wish you many more NED years.
Thank you for stopping by!
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Wow! Beautifully written. I can’t relate, but I could imagine Jenn going through this had she survived. In my view, there’s not much rhyme or reason behind who gets cancer and who doesn’t, who lives and who doesn’t. It’s just life. Things just happen. As a widower, I’m not bitter towards anyone who survived cancer or whose spouse survived it. I probably went through that or had those thoughts at some point, just in thinking that it’s not fair, but I don’t have those feelings now. They were never part of who I really wanted to be.
My favorite part of this, by far, is when you write about living by what your heart tells you. What a powerful life lesson that is, and one that we all should learn and try to live by. Life is too fragile and short to spend it walking on eggshells.