Nurses with Breast Cancer

Hello, I was just diagnosed this week with stage 3 invasive ductal carcinoma.  I am a nurse and have been for 37 years, I am 57 years old and have a strong family history of breast cancer, so I guess I thought I would catch this before this stage, but guess not.  I will find out tomorrow the breast profile and start the direction of treatment.  I know I can beat this, but I worry about my husband and children and how they will handle the diagnosis.  The tumor is fast growing and they think it is inflammatory breast cancer.  Has anyone else had to deal with this diagnosis and survived past the 5 years point?

It helps once you get past the anger, to have a sense of humor. love that. There is a new show on showtime called The Big C.About Laura Linney going through cancer with a humorous twist.

TO all ANd NATIVE MARINER---new experience today-----I am reporting both people to their respective managers with the intent that a reteaching of  entire respective staffs and both individuals. 2 different days 2 different errors

My husband is in the final stages of lymphoma, He was in a usual state when i took him to the cancer center the usual labs were drawn Thurs last . AT the time it was being run in the lab he was taken up stairs. The number was unknown before I left the center. I came back shortly after five from a dental appt. The comment was made his BS was 52 and the gave him some crackers. The type with peanut butter. 4 out of 6 eaten. Greg's eyes were glased, response strange. Their resposne was that it helped with his confusion. No BS recheck. No recognition that this was a medical emergency. I have since found out they have no protocol for low BS. I got him in the car gave him 3 clucose tabs and food right away starting with wendy's ice cream--then 2 sandwiches. Problem is he hasn't been right since. How many brain cells were fried I have no clue. Well , 4 nurses didn't have a clue it was a frigging medical emergency. Or they were just figuiring I wouldn't know that -----------I am frigging tired of nurses that don't know what they should know. AND in a big center like that that they don't have a plan. Well i can fix it for the next person. But another part of Greg has been taken from me before it had to be. Bollix--great english word that is equivalent to fuck. Can keep you out of trouble when you really want to say fuck.

Today a respiratory therapist and phelb tech came to to a radial stick. They went for the left arm that had a LIMB ALERT tag. I said he has a limb alert tag you can't use that arm. The resp tech said okay we'll use the right , but if we can't get it we'll use the left. I repeated he has a limb alet. She said if I can't get it from the right I will use the left. I said no way will you. She got huffy and made some comment I don't remember.  They got their stick. I called both sups.

The hospital has a limb alert policy. Identified by a pink braclet on the affected limb. DUH. The resp. tech was completely willing to ignore policy. Bollix . If I hadn't been there she would have breeched policy and we may have not known it. WTF. The point of a policy is?

If as I have said before, maybe not here, I had tracked the amount of errors between Greg and myself through out our cancer journey no one would believe me --they would say ahhhh your making it up. 

WTF---------------I am not feeling kindly right now.  I have but a short time with him. AND all the DAMN errors are PISSING me off.   )(^%#@!@$&()_+. DS is seening it firsthand--finally. he would hear me tell stories and blow them off. Now he see's it with his own dad. I apologized to DS for my reaction in the situation. AND he said no mom you were right. He normaly reacts negatively to and raised voice.-----well he finaly gets it.

DS's commennt of seeing what his dad has had to go through since brain cells were fried and then todays blatant disregard of written policy. He said I can't believe what you have been through and what you have had to do your whole life.  He has been camping in the hospital with  his dad and has the short lesson of what it means. ANd then this past weekend of his dad who had to pee maybe 20x's a night, wanted to change where he was sleeping maybex's a night.

last nite in the hospital I made hash marks on the reverse board.  15 trips to BR, 1- urinal, 4 wandering cause I didn't wake up until I did wake up to find him in cupboards or trying to leave the room and there was no bed alarm. Tearing of his own clothing trying to get dressed because he was going to be dc'd at 6 am. Suspenders over the neck inside torn short but not attached.

We pushed the bed against the wall immediately early on because DH said lets see how this works then threw his leg over the siderail. So, I pushed the bed against the wall to prevent him from getting out that side. Then he wanted to sleep in the recliner I obsconed with. Then he decided to sleep in the double bed provided for me.--no rails. First time in a 1 year and 3 months we slept in same bed. I figuired safe--i'll know when he's getting up-----WRONG that was the count of four in the wandering. BUT it was nice to be in the same bed again.

I'm supposed to be sleeping now to relieve Ds in am. BUT i know y'all will underatnd . No explanation needed.

I will go back now and read and see if I can offer anything, but I just needed to get this all out. 

Thanks for all the support and NM your a trouper.

To all here---my husband Gregrory Joseph Spaid died at 12:30a.m. on August 20, 2010. For those that I PM'd I told them to come here. I have two stories: one of nursing, and one of religious belief.

I have been in nursing since 1969 (RN since 1974), and never have I seen someome go through the pain that Greg went through on thursday. The hospice team worked so hard to control his pain. There were so many phone calls and so many changes of mediactions.  I am guessing that the tumors in the retroperitoneal space were growing likes spirals with cabagge tendirils. Pushing on the bladder making him think he had to pee every 3-10 minutes. It was confirmed later in the day by the hospice doc who went back to the hospital and reexamined all of the data. They worked so hard. They had uped his morhine to 40 mgc/hr-pyridium to reduce the bladder spasms, but it seemed to have little affect. 

While we were waiting for the next set of prescriptions to be picked up by my son, I said "well what have I got in my aresenal" - On hand and ordered - I gave him a restoril 30 mg. His last words were "Sheila, I'm not going to make it."  He went into a peaceful sleep five minutes later.

He hadn't slept that soundly in 20 years. He made the usual noises of a sleep apneic, but more restful. Only someone who has slept by an apneic patient could comprhrend that statement. He slept that way for about 6 hours.  Then he began agonal breathing - the type of breathing that can last for a few minutes or for days. Thankfully, he only did it for about 15 minutes

When he went into the peaceful sleep,   I went on the  porch and prayed for a quick passing, and called is aquatics GF's to spread the word for a quick passing. I coulnd't see my Greg go through so much pain again if he awoke. 

Thankfully he did not . 

The hospices nurses had only seen a patient suffer this much one other time. I was thankfull they reacted so clearly to the situation. 

My Greg is gone. My heart is broken. God has taken him home Throughout all his pain he neveronce swore. The one time that he happened to brush against  one of the girls legs, he quickly apologized. He even remembered to say "excuse me" whenever he could not help control belches. Me, I would have been swearing all over the place.

One of the reasons I married him was because he was such a gentleman--- a gentleman  to the end.

Oh Sheila,

as you know, I am just so upset for you and your family.  We have all had touches with the passing of loved ones, and I hear your pain and struggles to help Greg.  I am sure he smiles down at you right now, and wraps you in love and the "foreverness" of your love together.  You fought for him every inch of the way.  I also salute and honor your wonderful contribution to the Nursing Profession...you make us all Proud in your dedication and superiour knowledge.  I really mean that, I am so impressed with you...makes me wish you had mentored me at some point in my career.

So I pray with you today Sheila, that you are at peace, that your grief is not overwhelming, and that you are surrounded by Angels today...and let them help you through this.

Much Love, Namaste!

Traci

Dear Sas,

You and your family are in my thoughts and prayers.  May eternal rest be granted unto Greg, and let perpetual light shine upon him.

I am glad to hear that your experience with the Hospice nurses and the Hospice team was positive.

To all Thank you for your thoughts re: Greg and myself --I lost my Guy of 38 years, of loves up and downs . Hospice tried, like no team, I have ever worked with to control the situation . There wasn't an hour that went by that they weren't on the phone trying to figuire out something to fix the situation. . BUT God was there. , he finally rested and then he passed peacefully. I thank you all for your prayers and support.

As far as the hospital errors , I went right to CEO. WIth the cancer center I will follow up after the funeral. 

Cathy----hang in there ---we have all been through the emotions you are going through now. Please consider going to the Catholic thread. They welcome all faiths and there prayers are all embracing of any faith.  BCO(breastcancer.org) has so much to offer for whatever your need is--to learn review the main pages, to talk we are all here. There are many threads. Going to _Just dx'd there are several topic threads that will help you get started . This is a journey none of us wanted to go on , but you have come to the right place . You WILL get alot of support here.You can seek advice , you can scream, you can rant, you can cry, you can do whatever it is you need to do here. We all understand because we have been where you are right now. You will get support here that you will get no place else, simply because they don't get what you are feeling right now . We are here for you.

If you find a particular memeber that you feel can help you , you can do a PM --Private message. I didn't read all the instructional stuff way back when and it was not good. I missed many months of good support, because I didn't understand the dynamics of the BCO. 

You have come to the nurses thread and there are many nurses here that have knowledge that can help you through the coming times. BUT wander through some of the other threads. It's what we call  lurking --where you just view what has been written but don't post anything. THAT is just fine. Go through the index and find what fits your need and add them as FAVORITES--you look at the top of any post and click on it and it will add it to your personal list. --you can delete at anytime also.  Check out the newbies pinned site for abbreviations and lingo.

You will find such great support here . One of the beautiful nurses Karla,  starts every posting with "Namaste"  I could tell you her story, but I suggest you go back until you find it. It's not that many pages back. You will then understand why so many of us have incorporated "Namaste" into our writing. Namaste Sheila

 SAS_So sorry to hear of your loss. I took care of my mother-in -law, that suffered and died in hospice of cancer. Then when I was diagnosed with breast cancer, all those images of her suffering and pain resurfaced. Also doing home care( taking care of other cancer patients toward the end),reminded me of how things can so quickly turn.I'm so glad that you spoke up about the poor care your husband recieved. I'm the same way-go to the top and yell as loud as you can! Then let go of that anger. CATHY559-seems like we care for everyone but ourselves. Research,talk to doctors ,use all you connection to ICU you have! You'd be suprised how so many people want to help,just got to open up and let them in.

Hi Cathy,

 Thanks for the update.  It sounds complicated, but also sounds like you will have a lot of vigilant MD's looking after you.  Do you have a chance to pick your Nurses in the PACU and the floor?  I have a special PACU Nurse that has seen me through many trials.

I know you have the medical part down pat...so I wanted to follow up on your financial concerns.  Do you have short term and long term disability?  I was out under our FMLA leave...and have also been on a back to work program with my LTD as I have had to ease back into case management.  (never thought I'd have to ease back into non bedside work, good grief!) It sounds like you have been at your job for awhile, so there should be some financial support (I hope!) Please keep us updated...

Traci

I have to go today to get my port checked out. Look infected after my second treatment. Started out a little red,kept it clean and dressed.Last night noticed some drainage on the dressing. Don't want that to get out of control-septic. So hopefully I just need antibiotics and don't need it replaced.Feel good otherwise, was getting ready for treatment #3 Tues(tomorrow).

Rita,

how did your port check out?

Traci

Whewwww!! What a whirlwind 2 weeks. From Mammogram to surgery - 2 weeks to the day. I had the bilateral mastectomy on Thursday late afternoon.. came home on Sunday. Everything went as planned.

They started my insulin drip as I had asked before surgery in pre-op. I did find out postop they had a VERY difficult time intubating me and finally after multi attempts and finally with the 2nd fiberoptic attempt they got me tubed. And beleive me I can tell they did. As planned my insulin drip got turned off and my routine insulins started POD#1.  I had issues with pain control postop and the surgeon and co-workers were very concerned. I did over do it the first postop day much to my surgeon's dismay. I asked if I could be up and walking and such the next day and he said well if you really think you can.  By evening I was in terrific pain we couldnt control. When he found out the next morning I had not only been up but sat in the chair for multi hours and walked 1/4 mile he just shook his head and said no I am not sending you home today ( POD#2 )

POD #2 they put on a fentanyl patch. ( Let me tell you once they put on that patch you could tell when it kicked in about 16 hours later. But they were also giving me vicodin  orally for control.) He suggested I get in the shower and let the hot water just run across my chest and I would feel much better. So he removed my dressings and left them OTA. Showed me where I would need to pad the staples so they wouldnt catch on my nightgown when I was done with my shower. THAT was the longest shower in history. he was sooo right. My girls were teasing me I was gonna run the hospital out of hot water.

I really didnt have as much issue with my CHF as we thought. I only urinated once from the time I left OR for less than 200cc until 9am the next morning. My cardiologist came in stopped the IV fluids  restarted my diuretics immediately. I still had rales in the bases but was well controlled and diuresisd about 7 liters. By the time I was discharged I could have spit cotton. LOL.

I found a front closing sleep bra at Walmart before I had went to the hospital and bought one 4 sizes bigger than I usually wear around. THAT was a godsend for the trip home. It wasnt tight but with dressings as padding it supported the drains and incisions.  I am soo glad I have the patch and I dont have to take the vicodin very much at all. The pain is not too bad now. I do have to say I was quite lucky between my surgeon and the hospitalist and my co-workers I am loaded for bear when it comes to pain meds.

I did have a strange thing happen at the hospital yesterday before I left .. phantom nipple pain . My daughter thought it was pretty funny. I have heard about phantom limb pain before but not  nipple pain. 

I know this will get better and it has been hard for me to let others do for me. My daughters have been a godsend and have been with me to the point of almost being annoying LOL. God love em. .. they love their momma. I had several visiors yesterday  more said they would come today. Ughh!!  Tons of phone calls which my girls are intercepting. 

My 7 year old grandaughter was waiting for me when I got home ( she and her momma and I share a household) . The first question as she looked me eye to eye was.. well are you gonna let me see it???  I said well if you want too. And she did.. kids are so honest. She first says well.. it's sorta ugly.. he didnt draw a very straight line. I just chuckled. No he didnt I said.  She says Well what re we going to do about those things? ( pointing to my drains) I said why? She says well I cant very well cuddle with you  with those things there can I? I just laughed and said well LeAnn I think we can figure this out and find a way dont you think and they will only be there for 10 days? So off to the bedroom we went and cuddled while we watched TV for a couple hours.

So then everyone that stopped by all afternoon she asked.. Do you want to see where grammy;s boobies use to be? Her Doctor doesnt know how to draw a straight line.  The look on my visitors faces were priceless.

Cathy, I never had phantom nipple pain after my mast, but now, after the right prophy mast and bilat recon I do!  Actually, not pain, but I get the same feeling I had when they went to high beam from low beam when it's chilly or I'm emotional.  It's really a weird sensation, and I actually look down expecting to see the nipples showing through, especially since I don't wear a bra anymore to help hide that!  Your granddaughter sounds like a treat, and I can just imagine the looks on your visitor's faces.  Children are so forthright.  Gotta love 'em!

Cathy -sooooooooogreat to hear all the positives. The GD response is priceless. The fluid thing reminds me of my toxemia with my only pregnancy. Didn't start to diurese until the eighth day then lost 37 lbs. in ten days. All I did was pee. Only those that had a clue knew how dangerous it was. Others said generally "great job on loosing the weight." Sounds like your team was great. Glad your back here ---worried when there were no posts. So, keep us updated. Namaste Sheila

Okay I backtracked to Page 12 and Karla signed off because the computer sitting was causing her neck spasms post surgery. Sent her a PM telling her we were waiting for her return if that was possible. SAS