Not Buying Into It

Anonymous

Pompeed

Heidi: I think it's quite fair to assume that you'd be "rattled" too if someone you don't know from a hole in the wall insulted -- without any basis to do so -- your painted horses and your vehicle and your harness and all of the rest of the things you value and are proud of and speak about in your career with horses. 

Congratulate yourself: your insults about who I am and what I do hit the mark.  You achieved the rattle you set out to achieve.  Pat yourself on the back and gloat over your success.

The board is exactly like real life: many understand the value of the Golden Rule and then, well, there are some others.

Anonymous

Headed out for a nice Thanksgiving Pompeed. You enjoy yours too.

Kitchenwitch

Pompeed, I hope things are mending (or will very soon) and I'd like to say to everyone that attitude is often - sadly, disappointly - meaningless.

Sure, it's great to think positive and hope for the best. But there are times when everything can seem so overwhelming that that just isn't possible for some people.

I have just finished a year of on-and-off treatment similar (I think) to Pompeed's. I started with a mammogram that no one liked. OK, five doctors agreed I'd have a lumpectomy and radiation. Well, I had three lumpectomies, and I just had a mastectomy last Thursday. Opted for immediate reconstruction against medical advice because they were pretty sure I would need radiation. I had nipple-sparing mastectomy and I was fairly convinced that I would need radiation and would also lose the nippple based on a bad path report.

Yesterday I got my path results. Apparently everything is OK and I am done with treatment (except for some cosmetic surgery). My point (and I guess I sort of have one) is that I was bitterly angry about the mx; terrified and conviinced I would need radiation. And I don't. It worked out. I did NOT think positively this last week; I tried to be grateful and pleasantish to my husband and kids, but I cried and freaked out tons. That's just the way I'm built. My older son has autism and is a real handful. Living with him during this last week was very rough. (I feel better able to cope with him now.)

 Maybe not everyone gets this, but sometimes nothing but venting the angry hurt feelings will help a person. And it doesn't make them a bad person or an unrealistic person or a person who is beyond help or hope or simple human kindness. And ... it doesn't mean they're talking about anyone about themselves. 

Will stop rambling now and I do hope this made some sense. 

Texas357

I see a lot of self-pity in words and phrases such as "false hope" and "pointless".  I firmly believe that your attitude affects your perception of pain and hope.  

When I was diagnosed, I made the conscious decision not to be around crabby people or those who were the "Eeyores" of the world. I simply don't have time for negative thinking anymore. I'm too busy filling my days with as many positive thoughts and actions as possible. That makes every day easier and more joyful. Isn't that the point of living?

Yes, I've had my pity parties. And yes, there have been days/weeks when I see more white coats than friends. I've had 13 surgeries in the 2 years since diagnosis plus six months of chemo and 33 rads. But the balance has been in favor of living ... of feeling good ... of having the hope that some are trying to tell me is "pointless". 

I know the odds. I understand the reality of my disease quite well. I do NOT have my head in the sand. But I refuse to have that kind of black cloud hanging over my life.

Texas357

One last thought: the very topic of this thread, "Not buying into it" implies to me that those of us who do "buy into it" are somehow falling for false promises.

I've read the studies, I've examined the options, I've spoken with experts and those who have gone before me. In other words, I have gone into every juncture educated and with my eyes wide open. The hope that I carry with me is based on facts and the joy that I carry with me is based on faith.

I didn't "drink the Kool Aid". I have made decisions for my life and future that I feel have been disrespected by someone who says that similar decisions in her life would be based on false hope.

Pompeed, I believe that you are in emotional and spiritual pain -- as well as the physical pain you are suffering. I commend you for reaching out to others. However I cannot abide by how you belittle the decisions others in similar situations have made by inferring they are pointless.

I sincerely hope that you find the peace you seek. But you can't do that by making others feel the need to defend the steps they are taking to try to save their lives.

PlantLover

Pompeed,

I can't believe they were so unresponsive when you went to the hospital.  I agree with Lago - how very incompetent of the staff.  No offense to anyone but I would personally avoid going to the ER unless there really wasn't any other choice.  

My suggestion, for what it's worth, if you have any more problems call the doctor who performed the surgery.  You may have to leave a message with the answering service but tell them it's an emergency and that you need to speak to the doctor on call.  I know you were going with what the visiting nurse suggested and I'm not sure what MD was called, but I would try to speak to the doc that performed the operation if you have any more problems.  If he/she is not being responsive to your concerns, I think it's past time to find a new doctor.  

I know the drains can be a real pain!  I had a problem with mine getting clogged right after surgery.  I had some other problems but I don't want to make this post more about me than about you.

You know how I posted about your phrasing of treatments being pointless and you responded you should have made it clear you were stating that's how you were or are feeling.  I accept that completely now.

I'm an odd chick - I hold in a lot of stuff because that's how I cope.  Maybe you do too and you need to let it out somewhere & this is where you do it. 

There have been many, many times in the past year that I've told friends and family that everything was just fine when it wasn't. There are times when I do worry what the future holds.  Everyone can see my diagnosis in my posts.  I worry about METs, silently most of the time. I worry about that a lot.  Sometimes I worry if after all the pain, all the chemo, all the trouble and concern I've put my family and friends through I end up with METs .  I don't know if I'll be able to be as strong as some of the women on this board.  I really don't know if I will.  I just keep telling myself I'll cross that bridge if, and when, I get to it.

You do not always get what you expect.  I think attitude is important but sometimes you can go into something with the very best attitude and still end up having a difficult time. I thought I'd only miss a couple of weeks of work after my bi-lat.  I was in complete shock when it took me 5 weeks to return to work.  I don't know if it was more difficult because I had already been through chemo, but it sure wasn't because I went into the surgery thinking the worst.

I just had my tissue expanders replaced yesterday with silicone implants.  The night before surgery I was a stupid mess.  I was crying and scared that I was going to have as much pain as I did after my bi-lat.  I was affraid I wouldn't even be able to get up out of bed without assistance like it was after my bi-lat.  I was affraid of more problems with the drainage tubes. 

Sure, I'd been told it wouldn't be as bad by my doctors and read what others had said on these forums, but I was thinking and fearing the worst.  I said to myself and my husband, sure that's what they're saying but I'm not buying into it.

What a horrible attitude going into a procedure!  

Guess what? I was home 7 hours post-op posting on facebook to my family & friends how fantastic I felt and I meant it.  I usually have a difficult time coming out of anesthesia - not this time.  I'm hardly even taking in pain meds.   

Anyway, 'nuff about me.  Hang in there!  Please try to not give up.  I know you can do this. 

lago

Don't you just love Bec. She is my twin born 7months after me. ;-)

I have a feeling Pompeed is checking out the horses and not even reading these posts. I really hope that's where she is. I think the horses make her so happy.

baywatcher

Pompeed has been thru a lot lately as we all have. She is angry and venting and what better place to vent than here? I don't understand why anyone would feel that Pompeed has been disrespectful of them and their treatment decisions when she has made it clear that this is about her and her feelings. Isn't she allowed to express how she feels on a support forum???

When I was at my lowest point, I went to a support group. I let out my anger, I sobbed and I cursed the medical establishment. Many in my group totally disagreed with my take on my treatment but no one acted like I didn't have the right to my opinion. Some that disagreed with me just kept silent. I don't get why some people feel the need to beat her up for her feelings, even if they think they are negative feelings. They are her feelings and are just as valid as anyone elses. Maybe I just understand her more because I have a lot of the same feelings as Pompeed. I absolutely agree that it is better to be a positive person than a negative one but I know that I am not there yet and she isn't either. Give her a break and remember this is her thread and she is not telling anyone else what to do.

Happy Thanksgiving Pompeed. I'm with Lago...I hope you are out with your horses. 

debbie6122

kitchenwitch- Glad your path results were good

debbie6122

HAPPY THANKSGIVING every one, hope every ones day is peaceful and safe love you all- Debbie

Pompeed

What I want, Madalyn, is for you and your friends and your family and for everyone else here and their friends and their families to enjoy the holiday, to travel safely and mend, as much as possible, differences with others.

PlantLover

Same wish for you, Pomp.

Thanks for the luv, lago.  Yes, I am the younger twin. ;-)

Anonymous

HeidiToo (just coming in from *her* horses)- I've enjoyed reading the past few posts!

I agree with Kitchenwitch about the "positive" thinking stuff. I use to say that if positive thinking was all it took to cure cancer we'd all be healthy.  There was an article (maybe a book actually) awhile back entitled "The Myth of Positive Thinking" (or something like that). I really identified with it. Nonetheless, I also believe the "you are what you eat" kind of mindset so, whenever possible, I try to focus on the odds that are in my favor vs. the odds that are not.

Pompeed, believe it or not, I truly do care about your plight and, like others have stated, I hope you had a good day despite your circumstances. Peace.

Pompeed

Wisdom from Kitchenwitch:

"Maybe not everyone gets this, but sometimes nothing but venting the angry hurt feelings will help a person. And it doesn't make them a bad person or an unrealistic person or a person who is beyond help or hope or simple human kindness. And ... it doesn't mean they're talking about anyone about themselves."

Thank you, KW, for making a critical distinction some here have not bothered to explore: feelings are feelings and pasting someone with a "negative person" label and calling them names and denegrating their lives and their professions and everything else -- when one doesn't know them from a hole in the wall -- simply because one doesn't like hearing the doubts or concerns or fears or disquite that person expresses for their own life is highly insulting.  I doubt that some here would have the intertinal fortitude to do something like this to a complete stranger (unless they were really badly brought up) in a face to face scenario. 

 But, boy, for some others, when the target is namelelss and faceless and they themselves are anonymous, it's safe to join a stampede and to let loose with a backhand to the target's head.  Gotta show those uppity people who don't feel "right" the errors of their feelings as soon as possible lest the "wrong" feelings see the light of day. Hurry, hurry, hurry right over to Kinkos and get a big banner with lots of labels on it and wrap it around the target.

Thankfully, Baywatch and Bec and lago and Granny and some others clearly understand the distinction and are willing to stand up and say so.

Pompeed

From Heidi:

"Pompeed is a typical lawyer; seemingly always trying to blame someone else for her client's predicament. In this case, of course, she is her own client and we all know the cliche about that. Sad.

"In fact, her replies are... what... disingenuous?"

"Pompeed, believe it or not, I truly do care about your plight . . . "

I never met a stranger who called me names and insulted me right down to my bones and then tried to take it all back.

After finding out that I'm a "typical lawyer" who blames all of my client's problems on everyone else and being told I'm my own fool of a client and being told I'm disingenuous which is the same as being told one is a liar, I'm opting for the "or not" option offered.  

 Whatever prompted the string of personal insults in the first place can't erased by a shameless "I truly do care" comment.  That dog won't hunt.  

Lowrider54

Hi Pompeed...it surely does suck but at this point, it just HAS to get better from here. 

My drain story is nothing short of sureal.  The drain wasn't the issue, the massive amount of lymphatic fluid was.  For almost 6 months post surgery, I was having to go into the plastic surgeon and get manually drained - 460 - 780cc's at a shot every week and sometimes twice a week.  I wore sanitary napkin pads in my bra as it would leak and the end all to end all, it had stretched my not healing skin to the point of tissue paper - needless to say, it burst on my way to work one morning and I ended up having to go shopping to replace everything I was wearing as I was soaked - except my shoes, the socks were soaked but my shoes were ok. 

Two things - one, I think this drainage saved me from developing lymphedema as likely the fluid would have been building up in my arm instead so there was a positive in there.  Second, it prevented reconstruction.  By the time I could proceed, it wasn't going to be the simple implant in as I lost enough viable skin that it would require 3 more surgeries and more major scars as it would be the back flap wrap around (I don't know the real name) and I was not interested in going through anymore. 

I lived with the ugly thing and an external prothestic for 10 1/2 years.  Oddly, there was a plan as once I devleoped mets, there was no option but to remove the expander and I ended up with an implant and breast reduction in one surgery so at 56, I have the perkiest little B cups and the ps did an awesome job at mending most of the scarring. 

I am not going to say it was easy - it wasn't.  I am not going to tell you it didn't bother me - it did.  Intimacy was awkward, at best but once past that, I likely had the best sex of my life during that time frame - it made me look at other things and I probably tried to compensate for the yucky breast and boy, it was pretty awesome.  Oh and I do have some good funnies with the prothesis - the best one was flashing in Sturgis - I got a pasty for it since you can't show nipples in town and would whip it out to 'flash'.  I got a ton of beads that year!

It was pretty rough and chemo with it for 8 months - but once the thing healed and chemo ended and my brain came back - I had a pretty good normal life for a great majority of those 10 years that I was NED.  Would I have made the same choice again?  Yes.  I would have missed so many wonderful things that occurred in my life during those 10 years if I had made another decision. As with the rest of my life, I am often asked if I could change one thing in my life, what would it be?  My answer is always 'Not a thing, I wouldn't be who and where I am today - I may never have had my wonderful son, my beautiful daughter and grandchildren, living in a home I love surrounding by great neighbors and a great job and everything else that I have seen in my life.'  Would I wish that the bc didn't come back?  Yes but even in that, I am still here and living and my quality of life is pretty darn good considering I get through it with medication. 

I did what I thought was right at the time - it got all screwed up and it was no fun but I would do it again because I know what is on the other side and it was worth the short term pain for the long term gain for me. 

I am sorry you are going through this and I can understand your feelings - not much different than mine back then.  I was madder than a wet hen in a coop full of roosters...I pray and hope that this ordeal comes to close for you and sweet life wiggles its way back in - there is nothing wonderful about bc - but Pompeed, there IS something wonderful about your life and honestly, you really will find it again - it looks like it is just going to take a longer like it did for me - shit happens, I had the same darn healing issues with the reconstruction too - at least this time I didn't end up with 'concave' boob, just some patches that lost a layer and if things continue to stay where they are with the mets, I can go back for a touchup. 

I am not walking in your shoes - just wanted you to know that there is someone else that didn't have it so good either.  Does it help?  Not really but I thought you might like to know that you aren't so alone. 

Cyberhugs to you...LowRider

Anonymous

Pompeed, FWIW I do not take anything back; I am not in to spin doctoring. I call things as a see them.

That said, I stand by my previous statement:  "Pompeed, believe it or not, I truly do care about your plight . . ."

You can believe that or not because, as with everything else, it is your choice what you do or do not do. Peace. 

lago

OK now I'm bringing out the popcorn.

Anonymous

lago... HUMOR! humor is good. Take care girl.

Anonymous

Lowrider54

And in case anyone is wondering...from finding my lump in late summer 1998 - NOTHING went right...delays (no surgery until June 1999), no insurance, the drain story above, the single parent having to work and take care of an 8 year old, no reconstruction, expander in for 10+ years, external prothesis, almost killer reaction to chemo, so sick I couldn't move - it was Murphy's Law all the way.  And true to form, its back.  I am no different than anybody else with this crap - it all sucks!  A good attitude isn't going to heal me.  Avoiding negative people helps only in that is helps keep me from focusing on the negative.  I am in counseling, I am on anti depressants and anti anxiety meds.  I am on a pain management program.  All my scans have been weird - always some resolution, some shrinkage but some progression.  And again, same story - yep, results Wednesday - still only in the bone - excellent news ok...but there a new spots that weren't there before and oddly, those that were, even the stubborn one, are shrinking or gone.  I looked at the onc and said what is going on - all of my scans show great things, good things and bad things - he told me I was a bit odd - like I didn't know that already...we laughed - going to stay the course on the same treatment and do an MRI in two months and see just what the heck is really going on.  Arimidex only failed to suppress the one lesion, Faslodex has done that and then some but there is also new spots - can this brand new thinking of adding back the other anti-hormonal thus suppressing both types of estrogen expression lead to a stable scan????  I hate this uncertainty about this crap.  I say, lets do it - I may be somewhat persistant in 2 months - it is my life and I want to try it...I love my onc, he will be looking into it and it does make sense given the scan results that I may have positive receptors that are acting differently. 

Dang, I really hate this crap...

Edited to add

PS...sorry for the venting here...it kinda just came out...

Pompeed

Don't take anyting back, Heidi.  Stand pat.  Call 'em as you see 'em and hurl whatever insults come to mind when they come.   You're choice and you're sticking to it.  No reason to recognize errors of judgment or own up to them or apologize for them.  Never regret anything which injures someone else.

My choice: I'm standing pat on your previous statements:

From Heidi:

"Pompeed is a typical lawyer; seemingly always trying to blame someone else for her client's predicament. In this case, of course, she is her own client and we all know the cliche about that. Sad.

"In fact, her replies are... what... disingenuous?"

Thanks for a repeat back hand, Heidi.  Thanks for reminding me -- and everyone else here -- what a "typical lawyer" I am and what you think of "typical lawyers (not much!!!) and how I blame all of my client's problems on someone else and what a fool I am to be my own client and I'm a liar too. 

My choice: Your "I care about your plight" is bull sh*t.   

Anonymous

Oops! Edited for double posting of photo.

Lowrider54

Ok, I am done...evidently this thread has become a 'tit-for-tat' zone and the offer of support and encouragement is not even being read or appreciated so I am leaving and headed back to where a heart felt post about one's experience in an effort to assist another is at least recognized - it is hard enough to deal with this disease let alone put your heart and feelings into a post that, sadly, is passed over for yet another chance to sling mud.  I thought the campaign commercials were over... 

Be well.

Anonymous

Lowrider- PMed you.

Pompeed

Yes, Lowrider, it does help.  And I'm grateful for the time and effort you spent.

I've taken the matter of the drain into my own hands.  Literally.  It's out.  I cut the stitches and pulled the damn thing out.  Managing the wound myself now.  I'm 100 times better at this than MDs who have no time or interest to see the patient and listen to the problems.  The piece which broke off is, indeed, part of the mechanism to create vacuum and with that broken and not functioning, it's no wonder that it would not pull fluid.

Just letting all of the fluid that was backing up have an exit has make a huge swelling under my arm go down significantly and diminished the pain too because of all of the pressure building up into the wound and the muscles has been relieved.  Having done this myself, rather than waiting for a white coat to take it seriously, things are better than they were a few hours ago.

  Maybe the next few days will slope upward in terms of healing progress.

Anonymous

Four years post-grueling-treatment I haven't gained weight, I've lost weight.  My energy is fine.  I'm still sad that I missed out on making kids, but yoga and art have helped me establish a "new normal."  Yoga helped me relax the muscle tension from radiation.  Antidepressants help with the chemopause.  There's more hope than you can imagine right now.  Please see my video, "Unchastened", directed by Brynmore Williams, where I share a little of my story of life after breast cancer, and I dance.  https://player.vimeo.com/video/16386679

Anonymous

Four years post-grueling-treatment I haven't gained weight, I've lost weight.  My energy is fine.  I'm still sad that I missed out on making kids, but yoga and art have helped me establish a "new normal."  Yoga helped me relax the muscle tension from radiation.  Antidepressants help with the chemopause.  There's more hope than you can imagine right now.  Please see my video, "Unchastened", directed by Brynmore Williams, where I share a little of my story of life after breast cancer, and I dance.  https://player.vimeo.com/video/16386679

scuttlers

Pom,  Be careful to keep the draining area extremely clean and covered with sterile gauze and secure.  The last thing you need right now is an infection!  Once the drainage begins to subside, there is a bandaid available that "absorbs" the fluid while keeping it sealed and clean.  (I do not remember the name of it, it looked like a thin sponge and was well worth the money!)  

Sounds like you ran into some real medical idiots!  There are many out there.  Thankfully, most are knowledgeable and caring.  

My brother is a veterinarian; and if I am somewhere where I can't get help from the human medical field - he will help out.  (Dressing changes, consultations, pulling a drain, replacement of the bulb on a drain etc. etc.)  Don't laugh at me, I don't use him for all my medical procedures, but in a pinch he is truly caring and knowledgeable!