No one cares about this
I've become increasingly aware of the myths surrounding breast cancer, perpetuated by the media, and fed to the media usually by women that are only about 6-12 months out of treatment, declaring that they are 'cancer free'. We know that breast cancer is not this simple and easy - you can never know if you are cancer free - perhaps except if you had a grade 1 tumour, or DCIS. I see this as a problem because it creates a false, pink easy image of this horrendous cancer. It paints anyone who lives with depression, PTSD and fear as being negative - how do we get the help we need, and the support, with this perception? How do we ever put an end to the sexualisation, commercialisation and infantilisation of breast cancer when these women feed the media what they want: that getting breast cancer is pink, happy, very curable and often funny.
So yesterday I made a comment on something on Facebook about mammograms, stating that women under 40 can get breast cancer - as I was 38 at initial diagnosis. A woman only one year out of treatment had a go at my post implying that she had already said that, and other words belittling my statement. She had already stated that she is "cancer free" and “one of the lucky ones", so I said you actually cannot know if you are cancer free you are actually no evidence of disease, and I talked about my recurrence and now lifelong treatment. Her response “I am cancer free” and also thatshe didn't need my negativity and bringing her down!
So what has happened to me should be kept as breast cancer's dirty little secret because it's not the happy fun outcome that the media has fed these women and that they buy into? If we talk about the reality of breast cancer, we are hated and reported to Facebook as being negative!? I've also noticed that people in general couldn't care less about this. I've told people who never ask me how I am and couldn't care less. It seems that unless you look sick they don't care - yet come October they are dressing up as pink superheroes and holding pink morning tea to apparently support people living with breast cancer. My hatred of the pink rubbish and myths the media perpetuate grow all the time as I see the hypocrisy and the reality of what really goes on. Anyone else experienced this? Being told by the newly diagnosed, who believe that once their treatment is over they are cancer free - breast cancer is that easy, that if we talk about what we've experienced we are bringing them down and being negative" - or else there is just silence and no one wants to know?
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Deleted. My apologies; I didn't realize I was responding in a Stage 4 section.
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I bumped into this article recently which echoes the issues in your post.,
The Cancer Stories No One Wants To Hear
"During the 11 months when my husband, Ahmad, was dying of bladder cancer, few people wanted to hear how he was truly doing. They wanted to hear about hope, courage, and positivity, not about how Ahmad was unlikely to survive or his ruminations on how to live well while dying"
https://www.statnews.com/2017/10/06/cancer-stories-patients/
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The above article is spot on.
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For those who have had BC some take on board the statistics about reoccurrence ..for early BC .aprox 6-8 percent will have it again
Some do not want to know ..if they believe they are cured this is a positive for allowing them to get back to normal
I am interested in research and have a read widely on my disease ...
Dcis and now Metastatic
this has allowed me to understand how drugs work and make choices
I have felt that is is not important to be involved in the pink agenda
So breath deeply ...avoid the angst of others this diagnosis affect us in many ways and can cause opinions that are shallow in belief
All the best
Bright in hope
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Rubyredslippers- I no longer tell anyone who doesn't already know about my cancer. I don't update people who know about it unless they ask (something more specific than how are you) I still feel that people blame me (no risk factors, always exercised, never smoked or overweight etc) and think oh no! I have boobs too if I associate with you I will get breast cancer. the ignorance re the disease is overwhelming and the pink coverup is an economic boon to many companies.
mostly I don't look sick and people don't know, right now my hair is thin although growing back and I wear hats- people look at me strangely, but, don't ask which I find very nice. but, really people don't want to know- strangely I do want to know about people's illnesses and cancer details- I no longer think I can or need to fix it- but, I can listen.
I think that 30% of breast cancers become metastatic- can be stage 0- may take 20 years- lots of much better treatments.
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yeah, I dont get it. Can't believe the cancer patients I've met, even stage 4, that don't understand the situation they are in.
Some people just don't pay much attention to their illnesses in general. No questions for doc or looking for details. "Why are you so upset? We all die from something sooner or later."
So if they don't ask Doc, then Doc doesn't tell?
My mom lived In denial with her disease. I couldn't believe it, but it really worked for her
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Right after my MBC diagnosis I was talking to a friend who was sure that my cancer was cureable. She kept arguing with me about it because her brother in law “had stage four lymphoma and beat it.” It was a frustrating conversation. It finally sunk in with hbut it made things worse for me for awhile.
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I'm brand new to this whole thing (de Novo mbc officially diagnosed in March) but I'm already seeing this and it's frustrating. From having to explain to multiple co workers that no, I will not ever be out of treatment and "better" to people who were super supportive when I first was going through diagnosis and now even one month later have just disappeared. I get it, no one wants to think about how someone seemingly healthy who was doing all the "right" things can find that they have mbc at a routine screening mammogram. I find myself having to manage a lot of other people's emotions and comfort them, which is not great for the anxiety and grief I myself am going through.
Everyone wants me to "be positive" and I get why it's important not to wallow in darkness but I also find it impossible to have a happy outlook all the time nor do I think that is going to cure me.
People don't like to talk about bad things. I've worked in domestic violence services for nearly twenty years and this feels similar to when people want my clients to not talk about how bad things are because they would rather not think about it.
I'm not sure what the solution is.
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rubyredslippers,
You’ll find a fairly strong anti-pink sentiment here, for the most part. I agree that the pink washing of bc has led to some very bad misunderstanding of bc and created the impression that if you catch it early everything will be peachy. I admit to having mixed feelings. On the one hand, breast cancer gets a lot of attention and funding (good!) but on the other hand is the pink washing which glosses over or ignores how deadly this disease is.
Save for a few initial months after dx, I have always looked completely healthy. Since I never hide or soft soap my stage IV disease, I present as a puzzle to most. Some have questioned whether my dx is correct (Yes, there was that little matter of a bone biopsy …). I do not care what others think or if my bc upsets or scares them. That is their issue, not mine. Since I am comfortable being completely open (I don’t fault those who aren’t. We are all different), I feel that in my own small way I am contributing to helping folks understand the complex nature of bc and removing fear, shame, or stigma.
Lastly, I try not to be hard on those who don’t understand the disease because unless you’ve been personally touched by a disease, chances are your knowledge of it might be superficial. I know my knowledge of bc was that way until I was diagnosed (seriously, I had no idea that there were different types of bc!) . So, while I truly dislike pink washing, it’s not that people don’t care, it’s often the case that we don’t learn about things in greater depth until we are personally affected by them.
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exbrnxgrl, good post.
I can relate very well . A lot of people find it uncomfortable to associate with someone that has a death sentence. They know a lot of what they say is stupid and hurtful but since they do not understand and do not want to understand what and how since it is so painful and they are protecting from pain they chose the lesser evil - not to be around us.
I have been known to say that I will never be off treatment- until there is nothing to use and I will die. II said it not to a stranger but to someone who known me for years ! We had plenty of interactions and she had plenty of opportunitieto ask me specialy as I am completely open and she was privy to everything. To then come up with so stupid remark 3 years after my diagnosis with weekly contact with me during this time! People just refuse to understand. So they have a painful choice- either to feel pain or not to be close to us. Who can blame them… What hurts as well is their dishonesty - if that woman who protested that she was positive was not belligerent but just said sorry , I understand you are right , it is my way of dealing with it , just a figure of speech, I know you are right it would have been OK. But people do not have self awareness enough so instead they present it as it was your fault and inappropriate and bad manners that you pointed that fact. Please do not blame people , we are so fallible and shite.
It may be helpful to know/say that we all have about 150 cancer cells daily aappearing In our body and our immune system deals with them so if being pedantic no-one ever is cancer free.
I thought it was only me who disliked vehemently the general "how are you" question. II It is important to me , you do not even make the effort to keep in your mind at least in general what happens to me ?! I told you that I was changing medication 2 months ago- you have not even remembered that to ask me how it is ?! You known me for many years, you are not interested whether I have any difficulties in playing squash that you have known for years I played ?! When people ask me that question I use the copyright phrase of my friend "well - alive". She does not have cancer but that response is so good. Other option is to ask whether they want a response that would take 1 seconds, 1 minute , 1 hour or the whole day ?
On another hand I do not like stupid questions whether I work - but if to think about it they are not that stupid… I usually respond " what else would I live on ?" question. I think I mean that if i left work it would be so big deal for me that surely I would have said it first thing on our conversation… So if I have not how you an even think that I do not work ?!
It is difficult to find the right words with us but friends surely should try! It is bitter when we discover that a lot of people have fear that is stronger than their like for us…
I think ideal question would be depending on the time we have " how does it affect you " or when we have more time "how does it affect you in work , in relationships ? in sport, in everyday life , what is the plan , what is iin your head , to which extent side effects of the medication affect you" etc.
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I think an excellent question is what is expected in the future. It familiarised the one who asks quickly with most important aspects. It just that people in general do not want to ask awkward questions and rather would cut their finger off than say that ! Another big crime is when they forget what you said the last time - that is awful and I guess because they did not understand it and were too "polite" to ask 🙄 they do not know what is happening, that is why they ask so general things - because they do not remember those details that are soon important to us ! Or because they did not listen to our response the first time and have no idea because of it and feel uneasy and guilty about it - of course you f…ing will feel guilty if life and death issues of your friend are not important to you! They k kw they are sh.te , that is why it is not so nice for them !
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this does not involve cancer- but, did you know that there is a huge phenomenon of grown kids ghosting their parents? often the parents do not know what they did wrong- and the kid (s) don't respond to any type of reaching out. this happened to two of my friends-
I mention this- because I wonder if ghosting (happens to cancer people too) is a way of coping for all sorts of issues people have with others ?
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nkb,
I never heard of the huge phenomenon of ghosting one’s parents (huge, really?) but I feel fairly I have certain been ghosted as a cancer patient . In particular, a few friends who were supportive initially but really pulled away quickly after my stage IV dx (which came only weeks after my stage II dx, so it was quite likely stage IV all along). I’m very open about my bc but I know that hearing my truth makes some people disengage. I can’t tell if they’re scared they’ll catch my cancer or just being around someone who is stage IV makes them very uncomfortable.
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I too had never heard about a "huge phenomenon" of adult children ghosting their parents. I would be interested in knowing much more about this, as this is pretty much what my kids have done to me - way before cancer. I have always thought that it was a way for them to try and avoid a lot of emotional pain over family issues (their father's and my divorce, their grandparents getting ill and dying around the same time, and other family matters like extended family not speaking to me, etc.). I was thinking it was rather unique to my two kids.
I had had some contact with one of them until the last couple of years, although it was extremely minimal and "curt" on her part. When I got cancer, I wrote her a letter telling her about my diagnosis, and the response I received from her was a short email saying, "That must suck!" I've never heard from her again. I also know that via the grapevine her sister is also aware of my situation, but I have never heard a word from her.
Like Nkb mentioned, I have no idea what it is that I supposedly did to cause them to not want to speak to me. The little I've been able to ask, they give me very vague responses like, "Well there were a lot of things" and even, "You know what you did!" Well, sorry I have no idea. I always thought I was a fairly good mother and always put them first.
The mother of one of my sisters in law was said to have stopped visiting an old friend and neighbor of hers who got cancer and eventually died from it. They had apparently been very chummy over the years, with their kids growing up together on the same block and all. When she was asked why she would never go see this lady after she became ill, she would only say, "Well what would I say?" (That was all many, many years ago.)
It is indeed an interesting phenomenon that some seem to think they can avoid feeling personal pain if they just don't communicate with the people they associate with that pain, whether it's from cancer, family issues, or anything else. I actually don't think it works. I think they just bury it all and it eats away at them over time.
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I had not heard of this until it happened to two of my friends. One is very private person and the other is a "sharer". she told me about an article in the Atlantic I think and that she had been told about books being written about it- it was a surprise to her also. This is like you find out you have a grandchild because someone congratulates you at the grocery store and you had no idea they were even pregnant etc. since no contact for years. The theories I have heard about is the generational differences involved- it also said this is the generation of parents who were really involved with their kids. It was more common in divorced parents. Two books I have heard about "Rules of Estrangement". and "When parents hurt".
One statistic I read said that 27% of kids were estranged from a family member and the other said that 11% were estranged from a parent. that seems huge to me.
It breaks my heart for my friends and I hope that it works out for them and you threetree. My sharer friend put the whole thing on Facebook and got varied responses (mostly blaming the kid) one man wrote that it happened to him and he finally got his kid to talk about it and while he did not agree with the kid that he had done something egregious to him- he decided to just take total responsibility and apologized and rebuilt the relationship.
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I am terribly sorry for those who face any type of family estrangement, especially from their children. Being estranged from a family member seems fairly common, even going back generations.
You all know that I can be a bit of a stickler with respect to precision in language so forgive me but while the numbers, 25% and 11% have statistical significance, that is not huge. Feel free to ignore my particular brand weird 😊0 -
Nkb - After seeing your earlier post, I did google a little bit and saw a reference to the article in the Atlantic, and I one also in Newsweek I think. I'm so tired lately though (just started Verzenio) that I didn't actually read them. There was a lot more that came up too. Interesting, and something like what Exbrnxgrl said, I'm not sure that this is really a new phenomenon. I wonder if the media isn't just latching on to it and "framing it" as a "thing", if you will. The theory about my generation of parents having been more involved is interesting to me too, as one of the reasons I'm surprised by all of this in my situation, is because I tried so hard to "be there" for my kids, in areas of their lives, where my parents weren't in mine. You know how you always want better for your kids than what you had, and that's what I thought I was doing. I have wondered if maybe parenting can be "overdone" though and if that can create a backlash of some kind. A friend of mine whose son is in his mid to late 20's now is participating in a sporting event in another state and he flat out told my friend and her husband that he does not want them showing up (they were planning to go root for him). He told them something about how they always exhibit "bad behavior" or something at these things, so he doesn't want them there. He's going with only his girlfriend. This is a young man who does have contact with his parents, but still seems to feel a great need to set some boundaries of his own. His mother, my friend, told me that she thought she and her husband had always been "helicopter parents" and that maybe that was the problem. What surprises me about these perhaps current estrangements is that there doesn't seem to be the solid sort of reasons you might expect like physical or sexual abuse. It's not like one us murdered another close family member and now the others don't want contact, etc. It's not like you had a drug and/or alcohol problem and made the family life miserable with it or anything. It almost seems to be the opposite in some of these cases, e.g. maybe you were "there" too much. I know that my friend's son has had a very good, stable home life (only child) with all sorts of opportunity that many never get. He seems to be upset over more minor sorts of things like his parents possibly being "in his face" too much or showing overexuberance or something while he participates in the sport event. Again, he hasn't cut his parents off, but his concerns don't seem to be what you would expect. For years now, I've thought my kids were treating me as if I'd been in rehab every year of their lives and had a variety of strange men in every week or something, but in this case too, their complaints aren't anything like that. I too have seen the notion presented that perhaps the parent should just apologize, as you have mentioned above. I have considered doing just that, but as before, I'm still not sure just what it is I supposedly did to warrant the estrangement, so don't know just what to apologize for. Somehow a blanket, "I'm just sorry for whatever it is I did" seems hollow and not quite right to me. I'm glad it's worked for the man you described though, Nkb.
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