Support From Family falters

sorry to hear. I DID  have suport but one day my husband said YOU MUST BE MORE posititve.

I sais they day i was called back i was potistive i was ok, then day i went for suregery, I said it could be worrse. They day i was called back a few years later I said I am sure i'll be fine..

UGH...

But all in all i did have support.

Denise

I agree with you about the pink ribbons and bows! I hate them and I do think the pink campaign has done more harm than good. The money raised mostly goes to maintain the nonprofits and very little of it goes to research or to help actual patients!  I feel used by the whole thing. 

Wouldn’t it be nice to be able to just write people off because they are unsupportive, but I can’t do that. I am really very disappointed by my family in all of this and it is not getting better. Just recently one sibling said these words, “ I don’t understand why you have to do all these treatments, Sue had a double mastecomy and she didn’t have to do any other treatments and SHE Is doing fne now! OMG

Anxious One said:

While bald, sick, and an

While bald, sick, and an emotional midget, my three sisters went on the "sisters" annual yard sale hunt weekend. When I was at my lowest, they did not invite me, but took MY best childhood friend.  I was devastated, humiliated, you name it!  The next time my mother asked me for an update on my condition so she could tell my sisters who supposedly thought so much of me, I went off!  She acted like what they did was fine and tried to end the conversation. I have not yet gotten over the betrayal I feel.  

Anxious One, I understand your feelings of betrayal. My sisters went on the annual sister’s weekend and posted pictures on FB titled “the_______ sisters!   No mention of me! I almost replied on FB that I am not dead yet, but didn’t.   People are so insensitive sometimes! 

I came out of the cancer/chemo/rad and then I got the chip on my shoulder. My fault because I expected my family to treat me the way I would have treated them. So, I am now living with a scare of recurrence. So, I logged back onto the ACS page because I need to hear from other people who have experieced similar things.

When I feel alone, really really alone, I get on here and know that I am not. 

Prayers going up for all of you.

Hugs,

Annie

tufi000 said:

How's this one?

After treatments ended which I kep working through it all, (it wasn't blood family) they said to me " I think you could have handled it better"

done and done

that is awful

sorry you had to hear that

Denise

to this day since 2008 my eldest (NOW 30) has never mentioned cancer-never visisited me after any of my surgeries (mind you she and her kids live with me full time).

I think she may be like her dad-head in sand. (she is not a mushy person, to say the least-but 10 yrs later never a word about it...)

Denise

It occurs to me, at this point in my life, that perhaps many of us come out of our cancer experiences, with a chip on our shoulder for what we had to go through.

It is challenging, at best, to be handed a cancer dx.  It can be overwhelming.  Still, most of us manage to grab enough pieces of the puzzle, and assemble them, in order to make treatment decisions and get on with what we MUST do.  And what we feel is best for us, is the only thing we CAN do and ideally, we don't look back and we don't cry over our decisions.  We carry on.  It's all there is. 

Having said that, I think we all are also aware that a cancer experience changes us in some ways.  How much it changes us is really up to us.  It's a process and an arduous one.

We have to move quickly at the outset.  Not something we have months to relegate to research and decision making.  Thats befuddling, all by itself. 

Once we get our ducks in a row on how we wish to proceed with treatment, we then learn there can be setbacks, complications with treatment, side effect management, the many doc appoints, the worrying, poor sleep, often initial poor eating habits, annoyance with nursing staff, even with the doctors...or worse yet, realizing we do not have the best doc match for ourselves and need to change docs.  It's a lot.  It a huge emotional storm we must endure.  

Then, we have the still, wee hours of the night, alone with our thoughts and our tears sometimes too.  We struggle for balance throughout treatment and beyond.  And it's justified too!  Don't forget that.  People experiencing other life changing events in their lives, often are dx'd with PTSD, depression, anxiety disorders...all manner of issues, but somehow, media and even the very medical community which treats our cancers, have a nonchalant attitude of like:  "Well, you're still here.  What's the problem"?  To that I say BS. 

So many of us have cancer nowdays, that perhaps it's just easier for society to falsely believe the ONLY important point about cancer, is that you survived treatment, either long term or short term and get over it all. WRONG. It is not so simple at taking your "new normal" pill and getting over it.  It's about working through the trauma (and yes, it IS traumatic)

It's about digesting the lessons learned.  About yourself, other people in your life and choosing what you wish to do with that information.  Information you probably never would have gleaned, had it not been for your cancer experience. In my experience, some of those lessons were very good and positive ones and actually brought greater peace and perspective to my life, overall.  Some decisions were initially difficult, but well worth the pain, in the longrun. 

And yes, the ribbon waving, the happy dance because we finish tx and haven't died yet, IS indeed a bit much, but that circus is likely here to stay.  We can feel like we're in shreds and tattered, after tx is over, but those not in the know, haven't a clue.  It's how our society deals with such nasty things as cancer...stick a ribbon on it, profit from it and pretend we're all these big, bad warriors who showed cancer a thing or two and it was "nothing".  Right?  Not!  Perhaps, instead, we are "wounded warriors", in a sense, because we have endured and prevailed, but we are also changed forever.  In some positive and perhaps not so positive ways.  It takes time to adjust to the storm we have endured.  I say "endured" because it is a storm and it is a FORCED endurance, of hurricane proportions, regardless of which tx method we may choose or not choose. So, no, I am not a pink ribbot or pink anything else waving person.  I find that my efforts are best placed one on one, where they can make a difference, comfort someone, help someone, encourage someone and the only profit is the reward of having cared and the sharing that entails.  We who have been there, seldom buy into the hype surrounding BC, because we know the real deal of it all. 

We often don't have the kind of support we expect or want, because perhaps we are looking for more from people than they have to give.  We live in a "me" world and that's another thing that likely isn't going to change.  To that ends, I suggest that a good way to manage a lack of "sufficient" support, is to drop the person who can't find a kind word, or be bothered to do a kind deed for a friend or family member experiencing cancer.  Maybe everyone doesn't know what to say, but if one cares, they'll think of something.  Trust me.  It's absurd to make excuses for people and it's the last thing we have the energy or time to do, really.  And why should we?  There's an old adage:  "When people act like they don't care...believe them".  Another quote I saw a couple of years ago, made sense also:  "If I cut you off, it's extremely likely that you handed me the scissors".    Bottom line is that you know what you need and you must also decide what you will and will not tolerate.  Family relationships and close friendships, can and do change. and it's ok.  Toxic relationships are just not good, whether we have cancer or just had a bad day. Particularly, the former! 

Once we realize the world is not going to change for lil' ole us, we can get on with what we need to do and not waste energy on anything that isn't positive for us.  It's a dleicate time, contrary to popular belief, so go ahead and focus on yourself for now and make no apologies for it.  We have an abundance of emotions to manage already and don't need the extra upsets of how people who supposedly care about us, are behaving toward us. Sadly yes, we CAN have a spouse, brother, sister, parent or dear friend who is a bit of a jerk. Happens, but maybe we just didn't see it before we had cancer?  Maybe it's a revelation?  We can only deal with it in the most positive way possible for us and carry on.  If need be, just cut that person out, until you're feeling better and stronger, if it's causing stress trying to cope with someone not caring/being supportive. 

I haven't been to this site in quite a few years now.  I am 16 years out from BC, hormone neg, Her2/neu 98% positive, lumpectomy, SLND, chemo and rads, completed late, 2001. Yes, I'm still here!  In many ways, better than ever.  Have dealt with some late term side effects of tx, but hanging in there.  Some days are great.  Others, less so.  But for me, it's still all about the journey, not the destination. I have always been a proponent of the idea that "thriving" is healthier than "surviving", when we can get to it in our heads, that is.  And it's work to get there.  We all know this well.  It's a process and we CAN do it well if we trust ourselves. We are in control of more than we may believe and we are stronger than we may realize.  Whether we're here for a year, 10 years or more, TODAY is our most important day.  Tomorrow is super for plans, but today is always now.  

We're a brave bunch.  No question.  We have courage AND we have heart and we care about one another.  On this site, we can be heard and we also listen.  We share, we laugh, we cry and we get angry, together.  And guess what?  It's very good for us!  Being here allows us to express our weaknesses, our strengths, our up and downs, our concerns, our despair, share tips, our joy and all that our journey brings and that is a changing snapshot of where we are on any given day.  And that's perfectly normal.  No 2 days are ever the same on this journey.  And it's all accepted, because we're all in the same boat, on the same trip and all living in the same world, with all its pitfalls and delightful surprises, day in and day out.  Sharing is a good thing.  When I saw some of the posts about the pink ribbons and how it's been a negative for how our society treats BC, in general, I wanted to share my thouhts and feelings about that.  And also share some thoughts regarding disappointment in the support of family/friends.  Being an "old timer" on CSN, who hasn't been here in ages, I felt compelled to share some of what I've learned and offer encouragement.  When we're having a particularly down day, dealing with upsets, etc., it can sometimes help to think of it this way:  Maybe what's good gets a little bit better, and maybe what's bad, gets gone.  I heard quote once, many years ago and when I find myself in the dark, flaling about and feeling alone, I remember that and it inspires me to go ahead and throw a little pity party for one and then get my behind in gear and do my best to make that statement true.    

Warm hugs while wishing everyone the best...

Love, light and laughter,

Ink        

inkblot said:

Pnk Ribbon Mania and Lack of Support

It occurs to me, at this point in my life, that perhaps many of us come out of our cancer experiences, with a chip on our shoulder for what we had to go through.

It is challenging, at best, to be handed a cancer dx.  It can be overwhelming.  Still, most of us manage to grab enough pieces of the puzzle, and assemble them, in order to make treatment decisions and get on with what we MUST do.  And what we feel is best for us, is the only thing we CAN do and ideally, we don't look back and we don't cry over our decisions.  We carry on.  It's all there is. 

Having said that, I think we all are also aware that a cancer experience changes us in some ways.  How much it changes us is really up to us.  It's a process and an arduous one.

We have to move quickly at the outset.  Not something we have months to relegate to research and decision making.  Thats befuddling, all by itself. 

Once we get our ducks in a row on how we wish to proceed with treatment, we then learn there can be setbacks, complications with treatment, side effect management, the many doc appoints, the worrying, poor sleep, often initial poor eating habits, annoyance with nursing staff, even with the doctors...or worse yet, realizing we do not have the best doc match for ourselves and need to change docs.  It's a lot.  It a huge emotional storm we must endure.  

Then, we have the still, wee hours of the night, alone with our thoughts and our tears sometimes too.  We struggle for balance throughout treatment and beyond.  And it's justified too!  Don't forget that.  People experiencing other life changing events in their lives, often are dx'd with PTSD, depression, anxiety disorders...all manner of issues, but somehow, media and even the very medical community which treats our cancers, have a nonchalant attitude of like:  "Well, you're still here.  What's the problem"?  To that I say BS. 

So many of us have cancer nowdays, that perhaps it's just easier for society to falsely believe the ONLY important point about cancer, is that you survived treatment, either long term or short term and get over it all. WRONG. It is not so simple at taking your "new normal" pill and getting over it.  It's about working through the trauma (and yes, it IS traumatic)

It's about digesting the lessons learned.  About yourself, other people in your life and choosing what you wish to do with that information.  Information you probably never would have gleaned, had it not been for your cancer experience. In my experience, some of those lessons were very good and positive ones and actually brought greater peace and perspective to my life, overall.  Some decisions were initially difficult, but well worth the pain, in the longrun. 

And yes, the ribbon waving, the happy dance because we finish tx and haven't died yet, IS indeed a bit much, but that circus is likely here to stay.  We can feel like we're in shreds and tattered, after tx is over, but those not in the know, haven't a clue.  It's how our society deals with such nasty things as cancer...stick a ribbon on it, profit from it and pretend we're all these big, bad warriors who showed cancer a thing or two and it was "nothing".  Right?  Not!  Perhaps, instead, we are "wounded warriors", in a sense, because we have endured and prevailed, but we are also changed forever.  In some positive and perhaps not so positive ways.  It takes time to adjust to the storm we have endured.  I say "endured" because it is a storm and it is a FORCED endurance, of hurricane proportions, regardless of which tx method we may choose or not choose. So, no, I am not a pink ribbot or pink anything else waving person.  I find that my efforts are best placed one on one, where they can make a difference, comfort someone, help someone, encourage someone and the only profit is the reward of having cared and the sharing that entails.  We who have been there, seldom buy into the hype surrounding BC, because we know the real deal of it all. 

We often don't have the kind of support we expect or want, because perhaps we are looking for more from people than they have to give.  We live in a "me" world and that's another thing that likely isn't going to change.  To that ends, I suggest that a good way to manage a lack of "sufficient" support, is to drop the person who can't find a kind word, or be bothered to do a kind deed for a friend or family member experiencing cancer.  Maybe everyone doesn't know what to say, but if one cares, they'll think of something.  Trust me.  It's absurd to make excuses for people and it's the last thing we have the energy or time to do, really.  And why should we?  There's an old adage:  "When people act like they don't care...believe them".  Another quote I saw a couple of years ago, made sense also:  "If I cut you off, it's extremely likely that you handed me the scissors".    Bottom line is that you know what you need and you must also decide what you will and will not tolerate.  Family relationships and close friendships, can and do change. and it's ok.  Toxic relationships are just not good, whether we have cancer or just had a bad day. Particularly, the former! 

Once we realize the world is not going to change for lil' ole us, we can get on with what we need to do and not waste energy on anything that isn't positive for us.  It's a dleicate time, contrary to popular belief, so go ahead and focus on yourself for now and make no apologies for it.  We have an abundance of emotions to manage already and don't need the extra upsets of how people who supposedly care about us, are behaving toward us. Sadly yes, we CAN have a spouse, brother, sister, parent or dear friend who is a bit of a jerk. Happens, but maybe we just didn't see it before we had cancer?  Maybe it's a revelation?  We can only deal with it in the most positive way possible for us and carry on.  If need be, just cut that person out, until you're feeling better and stronger, if it's causing stress trying to cope with someone not caring/being supportive. 

I haven't been to this site in quite a few years now.  I am 16 years out from BC, hormone neg, Her2/neu 98% positive, lumpectomy, SLND, chemo and rads, completed late, 2001. Yes, I'm still here!  In many ways, better than ever.  Have dealt with some late term side effects of tx, but hanging in there.  Some days are great.  Others, less so.  But for me, it's still all about the journey, not the destination. I have always been a proponent of the idea that "thriving" is healthier than "surviving", when we can get to it in our heads, that is.  And it's work to get there.  We all know this well.  It's a process and we CAN do it well if we trust ourselves. We are in control of more than we may believe and we are stronger than we may realize.  Whether we're here for a year, 10 years or more, TODAY is our most important day.  Tomorrow is super for plans, but today is always now.  

We're a brave bunch.  No question.  We have courage AND we have heart and we care about one another.  On this site, we can be heard and we also listen.  We share, we laugh, we cry and we get angry, together.  And guess what?  It's very good for us!  Being here allows us to express our weaknesses, our strengths, our up and downs, our concerns, our despair, share tips, our joy and all that our journey brings and that is a changing snapshot of where we are on any given day.  And that's perfectly normal.  No 2 days are ever the same on this journey.  And it's all accepted, because we're all in the same boat, on the same trip and all living in the same world, with all its pitfalls and delightful surprises, day in and day out.  Sharing is a good thing.  When I saw some of the posts about the pink ribbons and how it's been a negative for how our society treats BC, in general, I wanted to share my thouhts and feelings about that.  And also share some thoughts regarding disappointment in the support of family/friends.  Being an "old timer" on CSN, who hasn't been here in ages, I felt compelled to share some of what I've learned and offer encouragement.  When we're having a particularly down day, dealing with upsets, etc., it can sometimes help to think of it this way:  Maybe what's good gets a little bit better, and maybe what's bad, gets gone.  I heard quote once, many years ago and when I find myself in the dark, flaling about and feeling alone, I remember that and it inspires me to go ahead and throw a little pity party for one and then get my behind in gear and do my best to make that statement true.    

Warm hugs while wishing everyone the best...

Love, light and laughter,

Ink        

 

 

   

Thank you Ink for that prospective. 

Hugs,

Annie