THEY HAVE NO IDEA!!

Dvin, sorry you had such a bad experience.

When I went to the radiology dept for the mamo before surgery and when they did the wire to find the tumor, I had a BC survivor transport me across the street to the hospital. Of course I didn't know she had BC until she gave me a big hug and wished me luck on the surgery. It was a nice way the hospital matches the ladies and knowing we have huge fears to give us support in a big way.

For the second surgery I was still in radiology waiting for someone to take me to the surgery floor. I had just finished doing the dye for the lymph when my BS showed up looking for me. He personally escorted me to the surgery floor! It was quite a sight, he's over 6' 5", me with my surgical gown on, my DD and DB trying to keep up with him. We hijacked an elevator along with someone on a gurney barely fitting on the elevator all 8 of us! He waited while they did the pre-op questions etc. I've used him before for other surgeries knowing he's very down to earth and extremely gifted. I'm very blessed to have had great care.

Sorry that others haven't had the same treatment. Each hospital, dr and nurse on staff can really create anxiety for an already anxious patient! True I was in and out on the same day since my lymph and second surgery wasn't wasn't as extensive as a MX.

I just don't like my Onc.... fired the first and the 2nd isn't much better. Not sure what to do about that yet. Not many to choose from here. Someone reminded me that I'm hiring the DR not the other way around. They're supposed to be working for me. I'll keep looking and asking for referrals. Wish me luck.

I have to remind myself when things don't go right.... or I don't feel comfortable, I have choices. I've been scanned, stripped of my dignity at times, and cut on but it doesn't change who I really am inside! I have a choice and I can rise above IT.

Blessing to all.

Fimi- So true!  If someone needs support and understanding from someone who really does have an idea what you're going through the American Cancer Society has a program called "Reach to Recovery".  They will match you up with a BC survivor in your area for you to talk to.  All the women go through special training before volunteering.  They will call or visit you.  Whatever you prefer.  Here is some information on the program-

http://www.cancer.org/Treatment/SupportProgramsServices/Programs/reach-to-recovery 

I had my simple skin mastectomy on 06-21 and no body seems to get it except u ladies.  My DH says what did you do all day, well afraid to say nothing, on disability from a RN job.  All I seem to do is nothing.  My breast feels like an iron, I cant sleep at night I worry, about everything.  My husband goes on with life with no worries.  I feel like life is passing me by.  This is my 2nd bout with cancer, I am having a stare off with my bottle of Tamoxifen hoping to start it 09-01.  I have no appetite, my friends never call.  What is this.  I feel like I am in a pitt and have to climb out.  I understand the fear take the drugs.  Is this life.  I take a shower look at my breast  and feel sad, its weird.  I wish I had a husband who cared about my emotions he is not that type.  They say it will get better. What.  This is it this is our life.  I am tired of life, this life.  It is not fair.  I look at other normal women shopping vacations not a care in the world.  They have no idea.  Im so thin well i have no appetite. I seemyself in your posts, especially about the messed up mammograms oh we need more pictures than the biopsy then diagnosis.  It is so hard.  Im glad I have u all.

I'm with you, I grew a backbone and a set of jaw teeth and I'm not afraid to use them;

Even as an old RN who has plenty of pepper to spread around, I became a whimp.  I discovered that whimpdom is not productive.  Only when I raised my voice and became Very firm, was I listeneed to.  I didn't have to do it all that much, but when I did, I was listened to.  It's funny, nursing is so overloaded with very sick patients that i feel sorry for the nurses, but I will NOT tolerate poor care when I am simi alert and know that things are not going well.

Even with my dh in the room (a lot of help he was, he's a surgeon and just wants to keep waters calm) I had to take care of myself.  My dd was at my last 2 surgeries ( not bc related) and by my actions and attitude when caring for her after a couple of surgeries, she knows how to play "mamma bear".  (Palin stole that from me)

Being sweet and a "good" patient gets you nowhere.  Squeeky wheel is all that matters.  Oh, and be sure to keep a pad and pen ready to take names---and after you get home write aletter to the Pres. of Nursing, and cc all the big wigs at the hospital.  The ones you mention for good may likely get a letter of recognition in their files and sometimes be better considered for a raise.  As for the bad ones, who knows, but I hope for at least a conference and when the bad letters build up, maybe they'll put on weekeend duty.

Hospitals want our business.  So do docs, the staffs could care less.  We have to keep them honest and providing the best care possible..

I also wanted to say we must speak up about our care in the hospital.

When I had my lumpectomy, a male nurse tried twice to draw blood from my left arm after I had been in the room for a few hours. After the second try, he reached for my right arm. Well, I knew about the risk of lymphedema & I told him no. He went to get another nurse who came in to do it, & I told her I had just had 5 nodes removed & "you're not supposed to draw blood or take my blood pressure on that arm, are you?" I asked, "What did my doctor say?" They left the room, came back in with yet another gal, & I asked again, "What did my doctor say?" They said he said it was okay. I asked, "My doctor? Dr. Tomita?" They looked at each other & said the doctor said it was okay to do it.

Sooooo, I said okay. I should have stuck to my guns!

When I told my bs about it at my follow-up appt., he said, "You won't let that happen again." I said, "You're darn right I won't." I am sure he was not the one they asked; I am sure it was his partner because I had seen him earlier in that day.

My DH knows to not let anyone draw on that arm & I have told him if I can't speak for myself, that he must do it for me.

wow, very scary stories to say the least. I hate it when before surgery they won't let someone be with you that is where I ran into trouble and they had gotten me so upset I wouldn't let anyone come near me until they went and got my cousin. They were so horrible and right before such a huge surgery was terrible. It cant' not affect how you do in the surgery if they upset you so much before. I just don't get it at all.

Oh gunner, I'm so sorry. I think in general men just don't really understand women and emotions, even the ones who try and act like they understand are still just totally baffled. I don't think they mean to be so alienating but that is how I feel when it happens. My ex. would just sit there when I was pourning out my heart and sobbing and it was like talking to a brick wall. It always made me feel so much worse. The guy I'm seeing now for the most part tries but duing this whole BC time, he was jealous of the attention I was getting and got his feelings hurt??? Before I would see him again I made him go to therapy as that was too odd and something I didn't need ontop of everything else. Since then he has really been trying and it is better but I don't think he will ever get emotions unless I sit down and explain why I feel how I feel and what it means when I say this or that. Exhausing and he wonders why I think it is like having another child at times..... 

I don't know how best to protect myself from medical personnel and such. A friend of mine had complications from getting her appendix out and when she woke she couldn't walk . I rmean really could use her legs. Her husband had come to be with her and as he stood outside her door he heard a nurse yelling at her and calling her names and such because she hadn't gotten off the bed. She was saying over and over, I'm sorry but I can't my legs arn't working... He threw that nuse out very quickly and gave her a good talking to and then went to every official he could find to tell them what happend and to make sure she never came into contact with his wife again. But what if he hadn't come? How can people treat people,Patients! in a hospital like that ? Just very scary....

Ladies, Today a friend sent me a link to the website of Paula Holland DeLong, a breast cancer survivor, motivational speaker and life coach. I've looked it over and see that she does offer individual sessions, on-line workshops and speaks at events, all for a fee. But her website offers a ton of free reading material and exercises on getting on with your life after cancer. I read a couple articles already and thought maybe this might be of help to some of you who are now near the end or past treatment and want to move forward. I'm still in the middle of chemo, have rads and oopherectomy to go, plus Herceptin until next August. But I relish the thought of moving on and thinking about something other than cancer.

The link to the info loaded page is http://www.whatsnextformylife.com/articles.html  Not sure if it will work here as a link or if you'll need to copy and paste it into your browser.

gunner- Just wanted to say I can empathize with all everything you wrote.  I can feel the pain you are feeling, especially about friends who don't call.  I have heard so many women say their friends just disappeared after their diagnosis.  WTH?  One friend told me she just didn't know what to say.  Well, then Google "What to say to a friend who just found out they had breast cancer."  I bet they can figure it out.  So just know it's not you, you're not the only one, this does happen a LOT but for the life of me I can't figure out why.  Sending you (((hugs))).

Fimi- I am so so sorry that no one from the ACS contacted you.  Obviously someone dropped the ball big time.  If they didn't have any volunteers they should have contacted you and told you that.  So wrong!  I guess I will think twice in recommending them.

Bon- Thanks for the link.  I will go check it out.

Wondering if anyone has this issue?  After 6 months of being poked, prodded, having mammograms, ultrasounds, MRI's, surgeries and about a hundred people seeing my boobs are you fed up with people touching you?  I actually had to cancel my dentist appointment because I couldn't even stand the thought of anyone sticking their hands in my mouth.  When I found out after my exchange that my PS wanted to see me in 1, 3 and 6 months I was so upset.  My DH said, "What's the big deal?  They're just going to examine you.  All the procedures are done."  I told him, "I JUST WANT MY BODY BACK!  I'M SICK OF EVERYONE HAVING ACCESS TO IT!"  I don't think he got it.  Anyone else feel like this? 

Bon- It is a weird feeling, huh?  Love your description of breasts, though, especially fascinate men!  LOL!

Caregiving in general is difficult.  I'm the director of an Alzheimer's assisted living and I see my care givers that have been there for 5+ years just doing their job on auto pilot.  They get frustrated with residents that need extra time, attention and care.  But that is what we do.  I'm constantly re-training on compassion in their care.  Especially with Alz.  I have had to let some long time employees go because they got so wrapped up in the mechanics of getting their job done, they just couldn't remember why they were really there.  Caregivers are so overworked and for the most part, underpaid.  Every caregiver, regardless of the position, should get at least a month off every year with a paid trip to somewhere exotic.  Just to relax, be spoiled and regroup.  How much nicer would everyones care be if our care givers were rested and stress free.

I'm not making excuses for rotten care.  There is no excuse for the way some nurses and aides treat patients.  Even if they can't have empathy, they really need to have sympathy and compassion.  Or at the very least, respect for another human being. 

When going in for any procedure or test that requires you to be out of it, please use a magic marker and write NO Cuffs and NO Needles on your mx side arm.  It's the only way I've found that may actually Work.  The sweet little pink armbands are nice, but actually few nurses look at those.

Introductions: I was at a new doc's office and he arrives reading my file (sent 2 weeks earlier, btw) and just sat down.  I said Hello, my name is Dotti ++++++, and stuck out my hand.  He was flustered but did finally introduce himself.  Never should have happened.  And if they call me by my first name, I call them by theirs.  REalllllly gets their attention.

On a recent surgery, I was having the good drugs and saw a man in my room peering at my personal belongings.  When I questioned him " and You ARE?", he stammered that he was cking on my trapeze bar--which I was not allowed to use) so I asked him to leave and come back with a nurse (I'm no youngster and didn't feel threatened, just angry he was looking at my stuff)

I've had to say to other hospital staffs: you are not hearing what I am saying: I said NO, I will NOT ---whatever.  As I've said, I do have a lot of pepper, I can and Will try my best to protect myself.  And I always ask for  each tablet or pill to be identified. 

AS I said, I'm an RN and I've made mistakes, so I expect no less from other medical folks. 

Stick to your guns, and listen to your gut.  You will know faster than anyone when something is "off".

When I've been prepped for surgeries, I get the little wrist band, but the prep nurses have always written on my arm as well.  What they actually did in surgery, I have no idea.  Except for once, I remember the tech asking where to put the cuff and someone told her to put it on my leg.  Valjean, the fact that one nurse cut you band off is outrageous!!!

Lowrider54- I had the opposite problem you did.  I had my exchange surgery at the end of June.  When I woke up in recovery I was in pain and asked if they could give me something so they gave me Dilaudid.  Apparently too much as I stopped breathing.  They revived me but the nurse didn't know what to do.  She called 3 different doctors and they kept telling her to call someone else.  They finally gave me enough of the antidote to counteract the Dilaudid.  Meanwhile, my DH was out in the waiting room wondering why they wouldn't let him see me.  They told him I was too nauseous to be seen and then told him I was sleeping and they didn't want to disturb me.  Meanwhile they told me that he had gone off to get something to eat and they couldn't get ahold of him.  I ended up being admitted for what was supposed to be outpatient surgery and had to go 33 hours without food.  After I got home I tried to get to the bottom of what had happened but just got the run around.  No one would fess up that they had f'd up. 

My onc is pretty much on par with Rae's.  No scans, no MRIs, just watch my body.  I was concerned at first too, but I'm getting used to it.  Onc said, how did you find the BC?  I told him at my physical.  He said well then, keep getting your regular check ups, watch for symptoms and if something turns up, it will be found.  I didn't run around getting scans and MRIs before, so I guess it makes sense.  It's just that feeling of abandonment takes over some time.