Walls We Build In Cancer Land

How many times have you heard it said that no one understands what you’re going through unless they’ve walked in your shoes?

We hear this all the time and not just in Cancer Land, of course. But in Cancer Land, I read it and hear it said often. And for some reason, it always bothers me.

Do you feel the only people who truly understand you are the ones who have also had a cancer diagnosis?

If you are metastatic, do you feel the only people who understand you are others who are metastatic as well?

If you do feel this way, that is totally fine. And I am not implying I do not feel this way myself at times. Maybe even most of the time.

However, I also feel we should be mindful of how we might come across when we say such things. Perhaps we don’t need more walls, even in Cancer Land. Maybe especially in Cancer Land.

Maybe it’s true that no one else can fully understand your path or mine. This is true with or without throwing cancer into the mix. No two lives are the same. Again, with or without cancer. No two cancer experiences are the same either. No one’s experience with anything is exactly the same as someone else’s.

Maybe it’s true that those who have not had a cancer diagnosis cannot truly grasp what we deal with after a diagnosis. Or maybe it’s not.

And does it even matter?

There are a lot of walls in Cancer Land. There are a lot of divisions.

Obviously, there are all the different kinds of cancers. Remember that cancer ribbon chart that often gets pulled out?

Then, there are all the divisions within breast cancer itself based on the types and sub-types. Sadly, there are even rifts between early stagers and those with metastatic disease. Each group seems to have its own corded off space where it stays separate in a sense from all the others. More walls.

Next, there are the age divisions. There are support groups and organizations for young people with cancer because they have different issues. Which is true enough, but somehow this particular wall always make me feel as if my mother dying from cancer wasn’t as bad a deal because she was ‘old’.

And then, there are men with breast cancer. And the hereditary cancer group. And let’s not forget the different types of advocates/survivors out there. Some of us call ourselves kick-ass warriors (not me), some of us slather up with pink, some of us now despise the color (again, not me), some of us do this and others do that. There are those who choose reconstruction and those who opt out. And those are just some of the divisions.

Sometimes it feels like we’re supposed to choose sides within the breast cancer community itself.

Is this not just more walls?

Of course, we have always had walls of all sorts. Walls are part of life.

Do we put up walls to keep ourselves in or to keep others out?

Remember high school? Yeah, me too.

It’s human nature I suppose to have some walls around us. It’s a survival thing. A safety thing. A being with others like us thing. Such walls are probably good, maybe even necessary.

But if we build too many walls and/or build them too high, won’t we just end up all alone?

And there’s already enough isolation and loneliness in Cancer Land.

I”m not sure there’s much to be accomplished by telling others they can never understand me unless they’ve had a cancer diagnosis. Maybe they can. Maybe they can’t.

What does matter is empathy. 

Cancer or no cancer, it boils down to being empathetic toward others does it not?

And I do believe others can empathize with just about anything another human being is going through, if they choose to try. Fully understand? Maybe not, but empathize, yes.

Regardless, cancer or no cancer, perhaps we might all be better off (and get lots more done) if we practiced empathy and understanding, instead of building more walls.

After all, we are all together in this thing called life.

Do you think only those who have walked in your shoes can truly understand you?

Are there too many walls in Cancer Land? If so, how do we “tear them down”?

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Walls We Build In Cancer Land #cancer #breastcancer #MBC

52 thoughts to “Walls We Build In Cancer Land”

  1. I agree. I believe our experiences – both positive and negative – can enable us to share in joy, and empathize in sorrow. For example, for me, it is not necessary for others to have the same fears as I do, but everyone has experienced fear. It is more important to me that they are willing to truly listen to me, maybe offer encouragement based on what has helped them when they have felt fear, and for them to be willing to stick with me no matter what I go through – irregardless of whether they understand it first hand. And then, I have also had times when I have needed someone not so close to my situation to be my touchstone, to help me out of the “overwhelmingness” of this dx and see it as one part of my experience, and not who I am. Thank you for this post.

    1. Elizabeth, Thank you for sharing your thoughts on this. I like your point that sometimes we need someone not so close to our situation. At the same time, even in that case, empathy is necessary. To me empathy means trying to understand with compassion. And I do believe we are all capable of this, if we put forth the effort it takes. I also feel it’s a skill that can be improved upon.

  2. I’m glad to see this post. The walls matter, in so many ways.
    In some ways, they’re a good thing. People are a little more careful, and aren’t so ready to say, “I know exactly what you’re going through.” So many of my friends were wonderful during my treatment, asking me, “What do you need? Do you want to see people, or would you rather be left alone?” It was nice to be asked.
    As a fiction writer, empathy is my stock-in-trade. It’s my job to put myself in the minds of my characters and see the world through their eyes. If I had written about a cancer patient before my diagnosis, I would have made every effort to do so without lapsing into stereotypes about “kick-ass warriors,” but it would have been difficult, since I’d only seen cancer from the outside.
    Now, after diagnosis and treatment, I’m often asked if I’ll write about a character with breast cancer, and so far I have to say no. For one thing, I don’t want to go back to Cancer Land and revisit what I went through. For another, I simply wouldn’t do that to one of my characters!
    But writing and acting show that occasionally, there are sensitive, empathetic people who really can understand experiences they’ve never had, and see the world as others see it. It’s a skill I think we should develop in our children, and in ourselves.

    1. Joanne, Interesting that you would never “do that” to one of your characters. That in itself says a lot. I believe people in general are capable of being empathetic. I see writing and acting as good vehicles for exemplifying empathy regarding situations we ourselves would never experience. When I think of my favorite movies and books, I think how I connected and empathized, at least to some degree, with a character. I totally agree we should develop empathy in our children. I think adults can and should improve their empathy skills as well. As well as medical professionals. Thank you for reading and commenting.

  3. I agree–and it’s one of the reasons I’m proud of MET UP. We have early stage fearless friends, male breast cancer patients, LGBT folks, caregivers, and folks of all ages helping us organize to save lives. If we don’t work together, we’ll die apart. I wish more breast cancer organizations would listen to all the voices–too often, when we express what our community needs, we’re treated with hostility instead of compassion. The best conversations I’ve seen in Cancer Land are when people with different experiences listen to each other, so we can understand each other. Empathy is so much better than walls!

    1. Beth, I love that about MET UP too. Your phrase, “if we don’t work together, we’ll die alone,” is spot on. I see lots of walls, which is really just another word for divisions, within the breast cancer community. And yes, empathy is so much better than walls. Thank you for commenting.

  4. Nancy, I’ve been thinking about this topic for quite a while and haven’t been able to write a post about it (thank you for opening a door for discussion). It is an important topic to address for so many reasons. Here’s what I think:

    We live in a world full of judges. To be more specific, we live in a society where everyone feels they need to have an opinion about everything. Very few people listen, and when they do listen, it’s with the intention to say something back. And more often than not, they end up judging, or at least it comes across in that way. The times I’ve used the statement, “no one understands me unless they’ve walked in my shoes” is when I feel I am being judged for my actions and approaches to life. I strongly agree with what you said about each one of us living a different life with different circumstances. But if we all agree with this, how come there is always a need to judge others?

    On ‘building walls’ in cancerland: I’ve been putting off writing about this topic because I am still gathering my thoughts around it. I def. believe there are too many walls in cancerland, and one way to break this, is to believe that we’re all in this together even when our circumstances are different. Dividing ourselves will not contribute to progress.

    I believe that we can empathize with anything someone else is going through, if we really try (without judging). There are people who have not gone through the same challenges I’ve been through and they have shown their empathy toward my situations. Now, do they understand what I go through? I am not sure. But there have been acknowledgements about my pain and fears, even if they don’t understand my situation. And that’s empathy. It’s what we all need.

    Thank you for a thought-provoking post!

    1. Rebecca, Thank you for sharing your insights. As always, they are well thought out. I agree about the judging thing you bring up. And I don’t know why we’ve become so judgmental about everything. That listening component is certainly a part of it. There is a huge difference between hearing and really listening to what someone is saying. I definitely believe in the potential and the power of empathy. And I think we can empathsize without fully understanding what someone is going through. I look forward to your post on this topic if you decide to write it.

  5. Nancy, I agree with you that empathy is so much better than walls. As Beth wrote, I believe that uniting the community is the best thing we can do. Of course sometimes it’s not only walls but misunderstanding of what stages and issues with different aspects of the disease that can be confusing as some people feel more in common because of their personal experience in cancer land.
    I also wish there was a better understanding of what many of us feel are the most important issues related to the disease – we need to extend life with quality of life and stop this from killing so many of our loved ones. There are always walls with so many issues, but I believe in the expression “united we stand-divided we fall.”
    I love the way you expressed this issue-very thought-provoking!

    1. Susan, You’re so right, misunderstanding sometimes comes into play resulting in more or higher walls. That’s why listening is so important along with validating. Like you, I believe in the expression, united we stand, divided we fall. And this definitely applies in Cancer Land too. Thank you for reading and sharing your thoughts.

  6. While I tend to think only those that have received a diagnosis of incurable cancer truly understand my experience, I have always welcomed the support and empathy of others. My husband isn’t on the other side of a wall, but we are experiencing my cancer differently. People like you, Nancy, have done so much to support us metsters. You’re not on the other side of the wall. Because of your mother’s experience, you have a great deal of empathy. You and other bloggers like Ann Marie of Stupid Dumb Breast Cancer also have the energy to help get more attention and research for metastatic breast cancer. You’re on our side…if there is in fact a wall.

    1. Kate, It is so good to hear from you. I think the key word in your first sentence is “truly”. I agree no one can truly understand what someone else is going through, cancer or no cancer. But we can all empathize, if we try. I certainly don’t think I can truly understand what a metastatic diagnosis means, but I can certainly empathize and yes, perhaps to a higher degree since I witnessed my mother’s suffering and death from it. Ultimately, the level of empathy doesn’t matter as much as putting forth the effort to truly (again, there’s that word) empathize. Thank you for your kind words. They mean so much. I’m always on your side. Always. xx

  7. Cancer aside, without empathy, I wouldn’t be a very good clinician or friend. I think it’s hard though for us to disagree and then agree to disagree. Some folks seem to take umbrage when others express different feelings than their’s, as if another person’s different feelings than their own is a put-down. And then there are the folks who seem to be telling others how to feel. I have a hard time with those folks.

    1. Kathi, Empathy is a requirement in your line of work I’d say. And it’s a so important in any friendship, too, of course. Interesting point about disagreeing and then agreeing to disagree. I suppose it is hard to have others disagree with us on “big” issues and not feel it’s a put-down. But then again, maybe not. Totally agree with you about those who tell us how to feel and what to do. I have a very hard time with those folks too. And I think this is why some of those walls in Cancer Land exist.

  8. Thank you so much for this. I’ve reflected on this very topic since my own diagnosis at 28 about 3 years ago. What I have come to is that empathy is not only something that must be provided TO us, but also something we must provide to others. I can feel isolated and angry all I want when people don’t show up the way I’d like them to; but if I put myself back into their shoes, I remember just how hard it is to show up and say the right thing in the first place. Since my own diagnosis, I’ve had a handful of (non-cancer) friends die, or experience tremendous loss or illness. I always thought post-cancer that I would learn from my own experience and be able to show up for people in the best way possible. But I’ve learned time and time again that there is no best way. All that counts is showing up in the first place.

    1. Felicity, You are so right. Empathy is something we need to practice/provide to others. It sorta comes back to the golden rule I guess. And yes, showing up is so important, and just in the physical sense. Thank you for sharing.

  9. I think the camaraderie and connection among people with similar experiences is a good thing, even necessary. At the same time, it’s best when it’s not exclusive to others. I’ve learned a lot from people with different cancer experiences and stages from my own.

    Not everyone is capable of empathy, but I don’t think it should matter. We all have people in our lives who don’t understand everything we go through, nor do we toward them. You bond over what you have in common. It becomes complicated among cancer patients because there are so many variables and such large degrees of pain and struggle. I know I’ve experienced “survivor guilt” toward my Stage 4 friends, even though they didn’t put that on me. I’ve also been on the other side where I’ve not understood the anguish of the Stage 1 person who never went through chemo. I remind myself that just getting a diagnosis is hell in and of itself. Then add any kind of treatment and you’ve got a trying experience. I suppose that’s empathy.

    1. Eileen, I believe in camaraderie too, as long as it’s not exclusionary which it often is, even in Cancer Land. I don’t think empathy and understanding are the same. And I guess I do think everyone, okay maybe not everyone, is capable of empathy. Of course, I might be wrong! It’s a skill one can learn and/or improve upon, at least I like to think so. Thank you for chiming in on this topic.

  10. Hi Nancy,
    Your use of the word “walls” as a way to describe what happens when people segregate themselves into groups similar to themselves is valid. Those walls cause people to believe that there is no way another can understand what they are experiencing. Whether it is race, political or religious beliefs, economic position, or health status, these things do separate people and can pit each person against one another.

    I think many of our experiences as humans can and do overlap allowing at least some understanding of another person’s life experiences. That makes for shorter walls. Though I try to understand the emotions and fears of others, I have learned that sometimes this isn’t always possible. A terminal illness is one of those experiences. I have been free of cancer, stage 0 and stage 1. Until I became stage IV, I could not possibly have understood what it was like to know that my life will likely reach its end in less than 5 years.

    Most of us have empathy for each other by knowing what it feels like to have fear that any one of us could die at any time through accident. There is a significant difference though between that aspect of dying and of knowing there is no chance of survival for any lengthy time period no matter what you do to prevent it. So, I do think healthy people and early stage cancer patients are on different sides of the wall than terminally ill people. This isn’t a bad thing, it just . . . is. Just because people can’t understand how someone feels doesn’t mean they can’t care. I think what is involved here is the difference between sympathy and empathy. Sympathy is necessary so that people unlike ourselves are cared for—necessary for the survival of individuals in a group. Empathy involves a deeper understanding of a person’s emotional pain and cannot be understood unless a person has experienced a similar event.
    Walls are high. Thankfully we have the internet to connect with others like ourselves. The words of friends make me aware they care, but understand? No, simply not possible.

    1. Lisa, You make some really good points. Thank you. I agree, I cannot truly understand what you are dealing with as a person dealing with metastatic disease. And you’re right, just because someone doesn’t truly understand, this doesn’t mean she/he cannot empathize. In a nutshell, this is the point of my post. Sometimes we have to allow others to empathize too. By this I mean, let them in. For example, this is one “problem” I have with closed FB groups of any sort. They are all about exclusion and walls. Of course, sometimes we need to have safe places like this, too, where we can let it all hang out, so to speak. Like usual, it’s about balance I suppose. Thank you for sharing your insights.

  11. I think it’s true that someone who has walked in your shoes can have a deeper understanding of what you’re going through and maybe as a result help in certain ways that others wouldn’t be able to. But in no way does this mean that others who care about you can’t have empathy and be very effective supporters. I experienced both when I was going through treatment, and was very grateful for both. On another level, I agree very much with the comments about the need for a united front against this dreaded disease – we simply can’t afford to have walls between us and among us if we expect to make progress.

    1. Lisa, You’re right about those levels of understanding, and they all matter and can make a difference. Support of any kind or for any cause is really about empathy. Something to keep in mind during this heated political time. And I totally agree we can’t afford to have too many walls (or too many silos, thinking about the Moonshot initiative here) if we want to make real progress.

  12. Interesting post, Nancy. I do believe there are HUGE walls in CancerLand, but not always walls separating this with and those without the disease. To be frank, I have seen walls erected this past year within CancerLand, erected by those within the metastatic community. I have seen destruction of spirit and will due to vindictiveness of those who can’t handle disagreement of any kind. I have seen “members” of the mets community attack other members and I’ve seen members of the mets community tear other members down due to differences of opinion. I’ve been asked to “unfriend” people who have different opinions and I’ve been “unfriended” because I won’t take sides.

    I’m working on a post about adjusting my expectations. I *can’t* expect everyone to feel the same way I do about things. That’s just not how life is. I cannot change how others think and behave, but I can change how I respond.

    I am well and strongly supported by a core group of people who have no personal experience with metastatic disease, but these women LOVE me to the center of their being. They have personal experience with ME. I am not cancer. Cancer does not define me. Because of that, there’s no wall between me and them. They honor my requests not to use certain language (“beat cancer” is at the top of that list) and I honor their request not to talk about cancer all the time. I hope I support them as much as they support me because they have huge challenges in their lives as well.

    1. Vickie, I have seen some of those same walls, too, and this is one reason I decided to share this post at this time. I’ve been sitting on this one for a while. I love how you say your friends love and support you to the center of their being, and you support them as well because you’re right, others have challenges too. A big part of friendship is about honoring thoughts, feelings and personal experiences our friends are having. And you sound like a wonderful, compassionate friend. I look forward to your post. Thank you for commenting.

  13. So glad you wrote about this, this is a very tough issue. I’ve been thinking very much lately about the comparison angle (as in the whole who has it worse part). I admit lately I’ve let the walls in CancerLand bring me down–especially recently. I just quit nearly all the Facebook groups I was in. VERY tired of the way “education” is being disseminated, in this “you just got schooled” manner. I am a shy, socially awkward person and the walls put me off. Maybe later, I will feel up to engaging in conversations, but not right now.
    Thanks for addressing this! Excellent!

    1. CC, I’m sorry the walls have brought you down. I’ve actually been thinking about pulling out of some FB groups too. I can’t seem to get to them all anyway. Of course, part of the deal is there is a lot of passion involved. I like to believe we can support each other, even when we disagree. I also believe that in Cancer Land it has to be, all for one and one for all. Maybe in life period. We have to work together on the big stuff, or else we get nowhere fast. Thank you for reading and sharing.

  14. This was the one thing that actually gob smacked me soon after I found #BCSM . I felt we were all in this thing together. The women with early stage BC and/or NED were fearless friends to our mets sisters, there to carry on the message for needing research. After all, I thought, we are all metsters waiting to happen. My thinking is that anyone who has heard the words ” you have cancer” have peered into the abyss. From the time we are diagnosed until treatment is developed, we all have thought (truly) that we were going to die. That means we all have walked in each other’s shoes. But I banged right into that wall of ” you can’t understand”. But I get it more than about almost anybody else. Lately I have been spending my time with general cancer survivors (I still hate that word). Men and women with many different cancer backgrounds. The acceptance is much easier in these groups, I guess I’m still a fearless friend though. Thanks for the topic.

    1. Jane, I’m sorry you banged into that wall. Your comment says a lot. And yes, of course, you’re still a fearless friend. Thank you for sharing.

  15. I have lived in Cancerland since 1981. I think the walls we build are to protect ourselves from insensitivity by others. Many friends have meant well over the years but didn’t have a clue. Why didn’t they have a clue? Probably because I wasn’t very open about my first diagnosis. But why wasn’t I open about my first diagnosis because I quickly learned that many people run away when they hear the word cancer – more so thirty years ago than now.

    I lost many friends over the years who were ‘friends’ until they learned about my medical history. But then I guess they weren’t my friends. Once burned, twice shy. Over and over again, and again.

    Empathy from others helped but was not really enough. They might try but until I met others with cancer, they didn’t quite understand. A cancer knocks you on your ass in a different way than anything else. You then spend the rest of your life trying to adapt.

    The ‘good’ people acknowledge you have cancer and health issues and treat you as a normal person. The ‘other’ people tell you how you should be treated, or mark you off as if you had one foot in your grave, or just pretend you don’t exist. Then you wonder why we build the walls….

    1. Caroline, You certainly have lots of experience living in Cancer Land. I think you’re right about one reason we build walls, to protect ourselves. The problem arises when we build too many walls or build them too high and they become exclusionary. I still like to believe anyone can empathize with anything another human being is going through. Fully understand, no. But empathize, yes. Thank you for sharing some thoughts on this.

  16. Even people who have cancer don’t always agree. Some shout it from the rooftops and others keep it to themselves. I agree that empathy is key to not alienating ourselves on either side of the news. As always Nancy, you target a point precisely!

    1. Mae, Cancer or no cancer, empathy is key for sure. Without it we lose an important piece of our humanity. Thank you for reading and commenting.

  17. Gob smacked is what I have felt as I continue to run into these walls in Cancer Land. Mazes I expected, but walls? Secret codes and handshakes and high school meanness all over again! In my experience getting off FB has helped. And I have found a monthly BC support group helpful – mostly, (I realize after reading all these thought provoking ideas here about empathy) because it is a place where I have rediscovered the practice of empathy. Someone gives it to me, and I pass it on to someone else. Thanks for reminding me to work on this. Linda

    1. Linda, I’m sorry you’ve felt gob smacked. I suppose we all have at times. I’m glad you’ve found a support group to connect with. I haven’t been to mine in a while and I need to get back, even though I don’t “fit in” well there, but as you said, it’s good to practice empathy. Thank you for reading and sharing some thoughts.

  18. Thank you Nancy, for writing this. Yes, empathy. There’s also desperation, frustration and urgency. Sometimes people make comments seemingly full of anger. Comments seeming so personal too. In practice they aren’t but words sting and they make me think twice about participation online. There is a lot of judgment and exclusivity framed as “you simply can’t understand unless you are in the exact same place.” But no one is ever in the exact same place – there is always some approximation. And we have this wonderful thing in addition to empathy – imagination. We can at least try to use it.

    i was diagnosed 5 years ago. My mother was diagnosed in 1986, and died in 1991. I’ve carried the memory of her illness and all that it entails for a long time. For sure, it wasn’t my illness and death, but I understand the anger, frustration and fear that follows you for a long time before I was diagnosed.

    Anyway, I try to be empathetic, try to help, but I’ve decided to walk away from the crapstorm of anger that I see all too often. Does that make me a non fearless friend, or no friend at all? I hope not.

    Thanks for putting this out there. ❤️

    1. Elaine, I think lots of the “issues” rise from the high levels of passion and social media can and often does magnify the passion and the hurtful side of things as well. I hope you don’t hold back from participating, when you want to participate, of course. We need all voices to be heard. I know you and I have similar experiences with our moms. I don’t think choosing to walk away from anger is a bad thing. We probably all do this fairly often. You are a fearless friend, Elaine. No doubt about that. And you get to be one in the way that feels right for you. Thank you for sharing. So good to hear from you.

  19. I think this is an important post. We do seek to find “a face like ours” and there is so much value in that. But I have also seen a woman with both breast and ovarian cancer made to feel like an outsider in an ovarian cancer group and have experienced survivors seemingly not believing someone who hasn’t had cancer can possibly be a passionate, authentic cancer advocate. As we seek and find connection and build our tribes, let’s remember there are threads that bind us all together and much we can learn from each other.

    1. Christina, I agree about those threads and the example you give about the woman being made to feel like an outsider makes me sad. Thank you for reading and sharing your thoughts.

  20. Nancy,

    This is such an excellent post on an important topic. I try not to get alienated from all these walls that do exist in Cancerland. Heck I’ve gotten swept up in the “Which cancer is worse” debate, which really isn’t a debate at all. Passions run high when it comes to illness, especially cancer, I think. I agree with you that we need empathy, the ability to imagine another’s person circumstance without necessarily being in it. Each of us is walking in our own shoes, nobody else’s. Still, we in the cancer community have this horrible disease in common. Frankly, I hate it when people say they have it worse than someone else. I mean, that may be true, but it’s not helpful to diminish others’ experiences. We all need to be compassionate towards each other. Great post, Nancy!

  21. I really don’t like the word walls. When I heard the words “you have cancer” the floor came out from under me. I had such great family and friends who rallied around me and I thank God they were there. But I don’t agree with some saying that you won’t know what it’s like unless you go through it. When I was at my worst during chemo and I couldn’t explain why I was crying, depressed, anxiety ridden and felt like my skin was creepy crawly – to have someone tell me I just needed to be positive and eat healthy – NO they will not understand ever what I feel like. But can they be empathetic – YES they can and were and I couldn’t have made it without those people. To have someone just let you cry and rage and just hug you and listen is so awesome. I didn’t need to hear one more person say “I know someone who had the exact same cancer as you – well there is not anyone who is exactly like you but yes there are others who have gone through similar treatments that can understand what you are feeling. I go to a support group – do we all have the same cancer diagnosis – NO but can they understand you – YES – that’s not a wall it’s called support. I hate Cancer Land – do I want to stay there no thank you.

    1. Alison, I agree, others can’t necessarily understand, but almost anyone can empathize, or try to. That’s my main point. Thank you for reading and sharing. And I hate Cancer Land too. More so every day.

  22. This is a thought provoking blog…I appreciate it. I have unintentionally put up walls between myself and those that have not walked in my shoes. I’ve attempted to describe it in my recent blog https://clamberton.wordpress.com/2016/01/08/we-are-never-owning-a-mini-van-and-other-things-that-creep-up-on-you/
    I didn’t think of my feeling of distance from others as putting up a wall, but that is exactly what it is. I started to ask myself “Why do I need others to understand what this is like?”. As I’ve search for the answer to this, I realize, like you..it doesn’t really matter that everyone fully understand the daily living with cancer. I’ve begun to work to remove the walls I started to build as a result.
    It’s funny a little…me and my sister ovarian cancer survivors will sometimes compare our lot to that of breast cancer survivors – another wall! We don’t have Pinktober, we don’t have all the attention AND treatment research of BC survivors. Our cancer is different, even consider it to be worse than BC (false, I know). I know, of course, cancer is cancer and all cancers share physical pain and emotional distress regardless of the origin. And I quickly concede that all the research for treatment for breast, lung, melanoma and colon cancer does also benefit us OC survivors and for that I am grateful.

    1. Trudie, Thank you for sharing. And you’re so right, what benefits one cancer patient, research-wise, might very well eventually benefit all.

  23. Hello Nancy,

    Thank you for opening this topic for discussion. I find the points of view helpful in refining my own.

    I always feel at home here, and return often. I read only this cancer blog and one by Debbie Woodbury for support and affirmation.

    My own support group has been a life line for me. Best of all is the listening. Even though they might not have gone through what I have, they all care, they all listen, they all support me, they rejoice when I celebrate, they show concern when I encounter difficulties. Their affirmation and validation of my feelings and my concerns have meant the world to me. We meet every two weeks.

    I am also blessed with loyal friends, who, though they do not have cancer themselves, care deeply and treat me as a normal person. We laugh, we go to dinner, we attend a concert or a movie, we go out for coffee. But they also respect my wishes and my boundaries. Best of all, they showed up. They were there. And I know I can call on them at anytime. They call and say, “How are you doing? I’ve been thinking about you.” One of them literally saved my life by insisting I go to the hospital.

    I do run into those who do not know how to show interest in a kindly way. To me, it’s more like being treated to the Inquisition, a bombardment of questions. Others have simply walked away.

    But, broadly speaking, I like and choose the company of those who treat me without simpering sympathy or patronizing pity. And I am blessed to have these beautiful people sprinkled throughout my life in many areas, even long distance friendships.

    So, I do safeguard my fragile emotions and limited physical energy by choosing settings where I am loved and welcomed and affirmed. If that means leaving some connections, so be it. My well-being is at stake.

    Thank you again for raising such important issues and for giving us a forum for expressing our thoughts and feelings.

    Every blessing,
    Honey Bee

    1. Honey Bee, I am so glad you have such good support, and you are very wise to safeguard yourself by choosing settings where you are welcomed and affirmed. This is so important for all of us to do when we can. Thank you for reading and sharing your thoughts on walls we build in Cancer Land.

  24. I always find your posts and the comments so interesting. Though technically post active treatment, I have tried and tried to find support online, and read a facebook page, though largely it is for those new to treatment, and largely it is too religiously for me. Part of me wantst to keep looking for comraderie and support another part “no.” The no is from feeling so terribly isolated ….cancer only magnifies I guess what was there before. I have lived in a rural area, isolated, but thought my long distance friends would rally through ( by rally I mean just an occasional phone call and perhaps a lovely encourage even free digital card. That didn’t happen. So every time I go back and revisit that space, that heartbreaking, just about – tore-me-apart-much -more -than – cancer space of having done this alone (one best friend would listen intently to me at times – who since left me after three years after he “overnight” fell in love with another long distance women and moved to the US) . Dysfunctional families only show their dysfunctional more. A brother who only contacted me a few times to get cash (drugs I think) and he now angry at me for having finally told him I am not an ATM. I could on and on.. But mostly no shows. I’ve said it here before. I just can’t keep going back to this horrible place of learning that I have no real family or friends that will show up for me in any meaninful way. It means I have no friends. I have LOTS of aquaintances. Others are blessed to have support and they CERTAINLY deserve to have it. Had I known all the folks who would not show up, i too would have NEVER shared about it with anyone. I am heart on my sleeve kind of person, and I was VERY open about my dx and treatment. Not in dramatic way or in a particularly emotional way with anyone but a sister (who cannot handle it) and the best friend who is gone. Sorry for blathering I need comraderie, but I don’t think I am capable of thinking about this diseasse anymore. I’ll be tough and do whatever is coming up alone. Kate

  25. This provoked a wonderful discussion on an important topic. Thank you for writing it! I suspect the barriers or walls we encounter within Cancerland reflect what goes on in our larger society. And how we respond to those walls or barriers perhaps is like how we respond to them in the larger culture. How do we protect ourselves and our identities without walling ourselves off? How do we acknowledge there are multiple right ways to do, feel and be – so long as no one is being harmed? How do we address the reality that the experience of cancer often is not well understood or empathized with by those fortunate enough not to have experienced it? I know that upon my diagnosis I learned so much so fast about the emotional, spiritual and financial costs of having cancer – I just didn’t know what it was really like until it happened to me. And I’m a pretty empathic and responsive person — most of the time, anyway!.

    1. Nancy, Thank you for chiming in on this one. Yes, it raised an important discussion here and on Twitter recently. You raised a lot of good questions. The larger message I was trying to put forth in this particular post is that no matter what type of cancer or what stage a person might be, we should all support one another – an “I’ve got your back no matter” what sort of support. I do feel there are too many walls. And the division that appears to exist in Breast Cancer Land between early stagers and late stagers continues to baffle me.

  26. This year I’ve noticed a wall between those who have had lower staged breast cancer and me, the big MBCer. And I think the wall is erected jointly. I want someone to share my misery and the woman I’m thinking of doesn’t want to have anything to do with my pain. She’s trying to protect herself and I hope she succeeds!

    1. Linda, That’s the wall I was writing about. Well, one of them anyway. I think you’re right that the wall is put up jointly. It’s sad there’s a woman out there who you’d like to share your pain with, but she is unwilling or unable to handle that. It might be naïve of me, but I do think we’re all in this cancer boat together, and it is one for all and all for one – or should be. Thanks or sharing.

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