Cancer Envy?

Beesie

I've been reading but not commenting, till now. 

wrenn, I'm tearing my hair out too. 

NancyHB, great post. 

ziggypop, very well put.

exbrnxgrl, (((hugs))) to you.  I read your post and immediately knew you were being facetious. Like Duh! 

naiviv

 I am actually enjoying my new hair growth too much ....I can actually see it without a magnifying glass now.... I have personally had enough for this evening.

Good night to all

Anonymous

Musical - When somebody says they are a member of the elite stage IV
club, you really should know that they are meaning it in a humorous
way.

No, not necessarily so. And in this case I disagree. Like everybody, I have a reason to say what I say and I'll stick to it thanks.

I will note, its interesting how this has suddenly become more focused on St4 than the OP intended and has since been said again. This is about all stages and those who minimize others of lower stages. Someone way back said they felt that from BCO as well. Obviously not as a whole but just some members.

vbishop

Ziggypop -

Thank you for your perspective and comments.

However, I think you missed out on my main point.  I am not the only person who has been "dismissed" by other women with a higher cancer stage, as is evident by other posts in this thread.  I have even felt guilty sometimes because I am "only" a stage 1. It's like we have "cancer lite" and we're cured after surgery.  Some of these attitudes are due to ignorance of the disease.  It is just a bit harder to swallow when it comes from a fellow breast cancer survivor.  I am not sure they even realize they do it. 

Bottom line, I wanted to find out if others experience the same thing, bring awareness to the fact that it does happen, and remind everyone why we are all here in the first place:  we have breast cancer...and we come here for support, understanding, knowledge, advice, etc.  It really is that simple.  We're all in club cancer.  Let's support each other in our journey through this disease and not minimize what anyone is feeling or going through.

vbishop

Love the post MsP.  Sorry it took me a while to say so.  Love your attitude, love your perspective.  Note:  My medical team doesn't marginalize me....I will find new docs if they did

ziggypop

Yay for hair growth - pleasant dreams, naiviv (and ALL of the rest of you as well).

vbishop

Lilly -

Well put! 

I don´t think any of us diagnosed with cancer get away lightly, its all about how we live our lives now and I freely admit i am struggling........

I don´t know if this helps anyone but I hope so, we are all in this rocky boat together, sadly

I have been trying to convey this message but I am obviously failing miserably.

dwill

Reading through the posts here, there is one thing that is evident with us all.  No one wants to have Cancer--any stage.  There are times I wish I could see in the future to know exactly where this journey is taking me so I can take time to exhale and really live before this life is done.   I had plans to retire at 65 but 7 months after my Cancer diagnosis I put in my retirement papers to retire in 2016.  I want to live my life and be able to go to my Happy Place everyday without thinking about what is ahead for me.  Probably--like me--many of you have other health or family issues to deal with other than Cancer.  I thank God for all of you regardless of the Stages because this is a place I can come to complain, cry, shout out in anger, or show envy--rather justified or not--and there are always someone who understands.  The thing that amazes me the most is so many of us are humanitarians with a love of people and life.  Love you guys and wanted you to know I appreciate you all wherever you are on this journey.

Jayaytea

Wow, I had a lot of reading to do to catch up since last night. 

So, I'm reaching out to all of you for support to try to deal with some of the feelings I share with others on here.

Why am I so bothered by what people say and by the assumptions out there?  Our friends / sisters with stage IV breast cancer have probably even had people say things like - "you are lucky you only have breast cancer," or  "if you had to get cancer, that is a good one to get," or something similar.

Why does it continue to anger, or frustrate, or hurt when people - any people, assume that, since you've recovered from surgery, everything is great? 

Why do I feel guilty for having a pity-party when I only have stage I breast cancer?

My thoughts on this;

    In someways, I've created my own "monster" by putting on a brave front, and being so positive (more so in the beginning when first DX,).  The more I got back to "normal life," the more people tend forget what I've been through.  Is that the crux of this? Am I craving attention?  To answer my own question, maybe sometimes.  There are days (after I've showered and dressed!), that I can almost forget.  I'm so thankful that I have those days when I feel back to NORMAL.  

    Because it bothers me that people don't understand how HARD THIS IS, I have chosen to change my response when they ask. I want to inform them, so if (God forbid) someone close to them goes through this, they can offer more support.  The worst example of inquiring:  "You're feeling good?"  I mean really.  It puts you in a position to disagree.  The best example of inquiring:  "How are you coping?"  Isn't that the BEST!!!    It opens the door to a real opportunity to tell someone what is going on!  One way or another, I want to say to people, IT HAS BEEN A STRUGGLE.  But I don't know why this is so hard to say to people.  Our society has us being all nicey-nice in public and not airing our aches, pains and problems.  There's that brave face again.  The best I usually end up saying is something like, "there are some days better than others" and then if they are genuinely interested, they will pursue the topic.  

   Why do I feel guilty for feeling sad about my stage I dx?  In my head, I know I still have to fight a battle, but I truly know that others have a FAR MORE EXTENSIVE BATTLE, whether breast cancer, or any cancer. Whether the loss of a child, or the loss of a spouse.  Hopefully, this is just part of the grieving process still going on.  

I tried to write this in "1st person" because I can't assume anyone else shares my feelings or experiences.  I want to get over the anger, frustration and hurt, and hopefully I can be like some of you on here, and be more positive and helpful to others.

With respect, and with gratitude,

J

   

   

vbishop

Musical -

Thanks for trying to bring it back to my original intent.  Somehow the discussion keeps veering off track.  I'm not sure how many ways I can say the same thing.

Time to listen to my special happy song.....

exbrnxgrl

musical,

Ok, now I suspect you're pulling my leg and I am just gullible enough to fall for it. Surely, no one could get themselves in such a lather over something I clearly stated was facetious and had no subtext what so ever.

In the event that you are not pulling my leg and find me so offensive (I thought long and hard about this . I believe I may have inadvertently offended somewhere between 1-5 people in my not quite 3 years on bco. Tried to apologize if appropriate), please feel free to use the block member feature.

Beesie,

Thanks, you're a gal after my own heart and I deeply appreciate your understanding.

For those who don't already know my story, here it is in a nutshell. bmx , staged IIB, had port installed, planned to go into clinical trial, echo found fluid around my heart. PET done to check out fluid. Fluid turns out to be nothing, but hey what about the spot on the femur? Meanwhile, lung collapses, long hospitalization. Finally, bone biopsy is done and it's confirmed that I've taken the express train to stage IV (no, not a literal train!). Chemo cancelled so straight on to Arimidex and Aredia. NED holding steady for 2 1/2 years. Daughters all wed, became a grandma, happily teaching first grade, climbed the Harbour Bridge in Sydney, another cruise coming up in April and I'm a Libra (true, but facetious). Laughter may not cure everything, but it sure does help (I once took a class in laughing yoga, seriously).

Caryn

sheila888

Musical.....It was me who wrote some type of discrimination from some members

The reason i posted on that thread was the question and i had the same experience to answer it

OMG......2 members got so upset and took it as an attack or something...just because it was under Stage IV forum

 i really didn't say anything that required it but deleted MY POST

I really don't like to be treated like an outsider...now I'm very careful where I post.......

I still believe we are all sisters no matter what stage

(((HUGS)))

vbishop

Jay -

I feel your pain.  Seriously, I've been there before.  But here is where I am lucky....

I beat cancer before - thyroid cancer (papillary carcinoma - very curable). Although my prognosis was good, I was a negative nelly.  I was angry, scared, confused.   As a couple, my husband and I did not deal with it well.  We didn't talk about it.  I felt very alone.  I found out later that hubby knew more about the disease than I did...he hated me being sick and wanted to fix it.  I just wanted him to listen to me freak out.

So...when I was diagnosed with breast cancer, I felt it was it was God's way of telling me to get it right this time.  And I think we did.  I vowed to remain positive, keep pity parties to a minimum, and find a way to talk to my husband about it that was comfortable for both of us.  As a family, we rallied...and we continue to deal with this as a family.  I thank God every day for my family, my friends, my amazing medical team, and my stage 1.

Hang in there.  Remember my "Happy" song!!

vbishop

Dwill -

Nice post.  Thanks!  Wishing you many days in your Happy Place!!

Jayaytea

vbishop,

You have retained a great attitude all through this thread, too!  

Thanks for sharing your experience and history.  That is good advice.  Men are funny creatures aren't they - they really need to FIX things, when sometimes we just want to SHARE! 

I think I tried too hard to spare my husband my feelings, and I pulled up my "boot straps" (what ARE boot straps, anyway??) - well, I pulled them up whenever he came home so he wouldn't see a surgical, depressed mess when he came in the door.  SO i did create my own problem in that regard.  Same with my grown kids - I just tried to smooth things over for them.

I actually shared your "Happy" youtube video on another thread just minutes ago!  (I gave you the credit tho, LOL)  

I'm going enjoy reading future posts from you.  Keep up the great attitude.

Love, J

ziggypop

vbishop - I didn't miss your point - I addressed it in the first paragraph and again in the last. In the second paragraph I simply pointed out that those of us at higher stages have our diagnoses 'downplayed' as well - and also from women who have BC and no it's not just me that it happens to. And In the third paragraph, I pointed out that I can understand that there are things that I can not understand about being stage 4 - whether I am stage 3 a/b/c/ or triple fff . I also can't understand things about having IBC or being triple negative. So really what I am saying is that I recognize that I am different than people who actually have worse 'odds' than I do - and were they ever to downplay my own 'stage' - I can't say as I'd really give a flying f***. But so far, I have never had anybody who is in a 'worse' position in terms of their diagnosis 'downplay' my diagnosis - ONLY people who are at lower stages and only a few of them and only about a specific thing that they really can't understand. 

I will ocasionally say to people who are just diagnosed with DCIS that IF you are diagnosed with BC, then DCIS is the one that you would want to have - I don't mean this to diminish THEM - I mean it to diminish their fear (literally - that what I want to do is have them be less afraid. Is it at all possible that when people make comments - like -maybe "It's good that they caught it early, " that you are interpreting them to mean that that your sense of fear or experience with cancer is not valid? 

vbishop

Sheila -Thanks for chiming in . 

During my early stages of lurking, I watched a handful of people that had obviously been on the boards awhile chastise a young woman who desperately needed answers and kind words, but was admonished because her posts didn't contain the right information.  She shut down and I haven't seen a post from her since.  I know this is the exception and not the rule...but still.

wrenn

vbishop, i'm sorry BCO has been a negative experience for you.  I feel lucky to see it as a haven and hope my perception continues that way.  I wonder if my perception comes from not checking stages when i read posts?  I rarely know one's stage unless it is mentioned specifically. To me we seem like a giant batch of struggling soldiers who are propping each other up.  I am grateful to have found it.

vbishop

Ziggypop -

I think I misunderstood this to imply that it was my "perception" that people downplayed my diagnosis and not the reality.  Thanks for clarifying.

vbishop - It may be that people have not recognized the extent to which you suffer with this disease and all of the things that go with it, and it's certainly less forgivable, and perhaps harder to understand when people who have cancer themselves 'downplay' (or in your perception - which is always a possibility- 'downplay') your feelings, fears or experiences. 

Anonymous

Not a problem vbishop. Youre always going to get opposition when you post something like this and Ive seen this happen at BCO more than once, but this is not the only topic. It really is sad when people have to get the claws out when things don't go their way or they dont agree with something. Heres an example.

Beesie, you said "like Duh"

OK, bless you! . Really, no sarcasm, no lies no facades, just bless you. You wanna get nastier I'll just keep blessing you more. Bring it on.

Jay, love to comment on your post. Have to dish up tea for hubby right now. Hugz.

Anonymous

wrenn

vbishop

Wrenn -

Nooooo!  I was just responding to Sheila that I have seen people mistreated, but it is the exception and not the rule. 

Overall, I enjoy this place and recommend it to others newly diagnosed.  I do see it as a safe place to vent, to learn, to connect with others facing the same thing.

Sorry to imply otherwise.  By the way, love your analogy!

Jayaytea

ziggypop,

You were the first person to respond last week when I was so conflicted about my emotions of the first anniversary of my mastectomy. And later in that thread, you wrote a beautiful, thoughtful post that really helped me.

Tonight, I re-read your post above twice, now I just re-read it again.  It resonates with me - the part about, maybe sometimes we misunderstand the intent behind the words.  It makes sense, because people may even be uncomfortable trying to think of the right things to say, and when they do, they want to say something to make us feel better.  In other words, by saying "Oh, you're lucky it's only breast cancer," instead of feeling diminished, we should recognize their attempt to allay our fears.  

Those words are helpful, again.  Thanks. J

MusicLover

Nope, only envious of the people who have never had to deal with cancer (yet) and just longing to be my old self again, cancer free and carefree!  This disease sucks at any stage because it messes your head up a little bit at any stage, I think that's why a lot of women opt for a BMX after almost any dx, and you still need to be on high alert that it doesn't take up residency in your chest wall. (I met a stage 0 who went to stage IV in 2 years time.)  Don't get me wrong I would rather be stage 1 then stage IV but my head would still be all messed up, that's just me.

We all need a cure! A real cure, early detection is not a cure!!! 

ziggypop

vbishop - I wasn't saying that it's just your perception - I do think that we ALL sometimes take things the wrong way and that were can be even more predisposed to do so if we have been treated 'unfairly' in the past - and even more so when our emotions run as high and on such a roller coaster as they do when we are hit with this disease. 

I believe that I know the post that you are referring to above - somebody started a thread that was had to respond to because it was unclear what she was saying had happened. A few people (probably with crossed threads) responded that what she said was 'confusing' - they were not attacking her, but she took it that way & not that when she did she immediately got multiple posts explaining that no absolutely that is not what people meant - just that the things she had posted didn't fit together (i don't recall - it was something like she had DCIS but was having chemo and that it was the worst kind). It was a very hard post to respond to & I think if you go back and look at the abundance of posts that the people who did respond make, they are among the most helpful and thoughtful people on the boards. I think that you did have an unfortunate confluence of circumstances.

Beesie

vbishop, I have been on this board for 8 years and I have never felt that I've been dismissed because I'm early stage.  I've never felt guilty about being early stage.  I've only ever felt relieved.

I have always believed that while there are many aspects of being diagnosed with breast cancer that are common among all of us regardless of our diagnosis, there are differences too. I don't know what it's like to be higher risk than what I am - I only know my own experience. So I accept that I can't fully identify with someone who is later stage, and I certainly have no understanding of what it's like to be Stage IV.  For this reason I don't usually enter discussions when the topic relates to issues facing someone who is later stage.  I may offer support, or provide some research (being the research geek that I am) but I don't go any further than that.  

I do spend a lot of time in the "Not Diagnosed" forums.  I've had so many breast issues over my life (I had my first surgical biopsy at 16) that I can identify with what many of the women who arrive here are going through. I do find it interesting how often the women in these forums talk about how absolutely horrible it is to have a call-back, or how it's the worse experience ever to require a biopsy.  Being on the other side of the cancer line, and from other life experiences, I know that having a call-back or requiring a biopsy really isn't the worst thing ever.  When someone who gets a benign biopsy result says "this was the most horrendous week of my life", I think "Well, you're pretty lucky then!"  But I've learned not to say it, as much as I sometimes want to.

My point is that we have to realize that our experience is relative.  As an early-stager, we may think our experience is the same as someone who has breast cancer that is later stage - "We all have breast cancer" - but the later-stager knows that's not entirely true, just as we all know that a breast cancer scare is not the same as living with a breast cancer diagnosis.

So maybe that's why some of the comments come out.  Or as pointed out by others, maybe it's an attempt to look at things from a positive perspective, because the truth is that it is better to be early stage than it is to be later stage. 

Jayaytea

I love you ladies!  Keep it coming, i think I may be starting to figure some of this s%#t out!

J

sheila888

vbishop......This is my HAPPY PLACE OAHU where my daughter lives

It was nice meeting you but also time to leave

Good Night

♥

vbishop

Ziggypop -

Obviously I misunderstood your intent, which is why I questioned it.  Thanks again, for providing more clarification.

 I think you may be right about the one incident.  The poor girl kept deleting everything.  But it broke my heart.  She was obviously distressed and needed help.  I didn't pay attention to who was responding to her...or trying to respond to her...but I remember feeling comments were a bit heavy handed to someone so obviously in a bad place and desperately needing an ear or a shoulder to cry on.  I was afraid to post anything.  I continued to lurk and realized that the women here are kind, caring, and full of great advice.

Anonymous

Sheila 888 hugs to you. 

Caryn, no building of strawmen necessary, no swinging the pendulum necessary and no lathers here and certainly no extremes. It is what it is. I simply have and will continue to stick to my guns from what you INTITIALLY said. Thats all. 

Jay, wanna read your post again but not in a hurry. Hugs.