new to forum, diagnostic mammo and ultrasound found large lumps

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exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 1/24/2018 10:53 PM (GMT -6)   
Brrrr, that is some cold weather. I know Texas can be like Florida where it's so cold you're wearing 3 layers of clothes and boots on one day and then a couple days later it's warm and your wearing flip flops and tee shirts. I really don't like the fluctuations. I do love the few cold days for a chance to wear a totally different kind of wardrobe.

The compound creams for the scar from my port removal seem to be working. I put it on twice a day, and the lumpiness is all but gone and the scar itself is very thin now. Yeah!

I have been looking more closely at the left breast, that had the radiation. My skin is still not back to normal, and I really don't know if everyones' skin DOES get back to normal. It's thicker, more leathery feeling, and is light brownish on the side and center front of the breast.

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 1/26/2018 3:56 PM (GMT -6)   
I regret to say I have NOT kept up with my pre-cancer days physical warm ups. I had been doing them nearly every day before the Nov. 2 surgery to switch out my tissue expanders, but I know I had a set-back with that "disease that shall not be named"...lol, sounds like the first Harry Potter book... I know, I'll call my disease "Voldemort". Now I'm pretty much back to as normal as I was before the surgery, so there's no physical reason not to be attempting to do them. It's emotional, because I haven't been sleeping. Sometimes I'm awake until 5am, 7am..... I am afraid of the nightmares I'll have. I don't have them every night, but often enough that I end up thinking about them with dread during my waking hours!

The nightmares/daymares I have are about the first hospital I was in for almost 2 weeks when I was struck by Voldemort. I'm a very easy-going person, not a complainer at all. However when I first left that hospital to spend another 3 weeks in a different hospital, I told my best friend (an ex-nurse, btw), that I wasn't really treated right at that place (I was very vague, I wasn't nearly ready to say what happened), my bf replied in the way that she and I both would usually reply to such a statement, and said "Let it go, it's in the past. You're in a better place, focus on the future, focus on your recovery. Keep positive thoughts in your head about how you are going to heal, and beat this Voldemort."

So I pushed the bad memories down and focused on recovery. But several months after I had returned home from the 2nd hospital, I finally opened the "Patient questionnaire" from the first hospital, that had been laying on my coffee table for months. I checked off all the questions rating this and that on a scale from 1-5...then it left a small space to add other comments. I hadn't planned to do this when I opened the envelope, but I started writing. Not planning what I was going to say, just laying out all of my experiences there, exactly as they happened. And it ended up being six typed pages! At some point not long after this I let my husband read it (I hadn't told him most of the things) and he was horrified, and said "You could sue." I also let my bf read it, and she said "Oh, my God, I had no idea it was that bad. You should sue." I haven't reached the point of suing yet, I am trying to get someone "high up" in the hospital to read about what happened to me.
Anyway, not sleeping well due to the nightmares/daymares is my excuse for not exercising like I should. I am going to attempt to do my routine now! Bye folks

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 1/31/2018 10:22 AM (GMT -6)   
E, I do hope you made copies of the questionnaire you filled out. I urge you to file a formal complaint against the hospital. You do not need an atty for that. Make copies of everything too. This starts your paper trail. Can you afford to seek some counseling, even if it is once a month. Lets say you decide to speak with an atty about this, one of the first things you will be asked is, are you seeking treatment & what dr dx'd PTSD? In situations like this having a dx from a dr & seeking treatment is a big part of arriving at what is called damages.

I would not hold my breath on being contacted by anyone over the questionnaire. This is why I urge you file a complaint against the hospital, that will get their attention. They need to be called on the carpet, as long as no one will speak up that type of treatment never stops. My dad was hospitalized for heart valve surgery, believe me, anything that could go wrong health wise did. The hospital admin found out very quickly that when I showed up in his office not to ignore me, I would not go away. The things that happened to him in that facility should not ever happen to any patient. I rained down all kinds of hell & grief on that place.

I do hope you can get some kind of help, you need good rest & from what you are describing for sleep is not happening. Keep me posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 2/6/2018 11:35 AM (GMT -6)   
Hi. Yes, I have made copies of everything. A complaint was eventually filed with the nurse manager of the floor I was on. She was very sympathetic and agreed that everything the nurses and aids did wrong were unacceptable and they would all be counselled and maybe some type of course given to correct the incorrect behaviors. That's all well and good, but it doesn't seem like enough. One of my letters to the President of the hospital was answered. He went through the standard apologies and displays of sympathy, and said he was giving my letter to a different department for followup. Someone did follow up and said they would be conducting an "outside" investigation. (The original complaint to the nurse manager led to an internal, hospital investigation of my case.) I was told it would be 30 days to get the outside review done. Thirty days past and so I've written the President again. We'll see what happens.

I am SO not a complainer. But there are still daymares/nightmares that I have that revolve around things that happened at that hospital and that affects how my life is continuing on now. I am seeing a counselor...the free one provided by the Breast Cancer Center. She is GREAT. I see her again tomorrow.

I THINK I may have had my last fill up at my plastic surgeon's. The breasts are almost the same size now. The doctor said that the breast that received radiation has to be a tad larger with the expanders than the other one, because when the expanders are taken out and switched for implants, the radiated skin will shrink up a bit. And there was only so much skin left, and it can only stretch so far. So I think I'm as big as I'm going to get. Which is not quite the size I was pre-mastectomy, but close enough.

I really can't get over having two breasts again! It is so exciting. I lived with that flattened yet bumpy side for nearly a year, and it limited my wardrobe to almost nothing. The lumps from the deflated expander started pretty high up on my chest so it limited my wardrobe to almost nothing. Even a regular scoop neck or non-plunging V-neck revealed too much.

I hope you are doing well, Susie. Catch me up when you can.

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 2/14/2018 2:26 PM (GMT -6)   
Well, I have to say that I am very disappointed at how slowly my hair is growing back. Most of it is just 2 inches, and some places 3 inches. And it ONLY stands straight up, like clown hair. Not a fun clown either, but a very scary-looking clown, like the one in Stephen King's "It". I've tried various products thinking I'll be able to style it in some way, but the products haven't given me good results. I do love my wigs--they are very real-looking, with highlights and lowlights, and one of them is the length, style and color of exactly how my real hair looked before it fell out in Nov. 2016. The other one is just a shorter version of the same wig. My leg hair and "bikini area" hair grows like crazy. It took a REALLY long time, but my armpit hair finally grew back. I shaved it once and not a single hair has grown back. It's been over a month! It really does depress me about the shortness of the hair standing straight up on my head.

A part of me feels guilty for complaining about this. I went through breast cancer, and things could have turned out so much worse, and I know they have for some other people. It could have spread to more than one lymph node, it could have spread to the chest wall (muscle tissue, I guess), or worse-- spread to some other part of my body. I know folks who have each of these paths to take. But I'm keeping it real. This is my story. What is happening to just me and the issues that affect me, and how I deal with them.

I see my PS tomorrow, and I'll be surprised if I get a fill up. I think my skin has stretched to the max.

Best of health and positive thoughts to all!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 2/16/2018 9:40 AM (GMT -6)   
Good morning E. First off, please, please do not let even a smidgen of guilt creep in over the hair loss. This very thing affects many, many people that have gone through this. I think I mentioned previously about members in the PC forum that always sported beards & mustaches & once they started chemo they lost all of their body hair. Yes, it disturbs them too, its not a vanity thing as far as I see it. I have seen people that lost their hair after developing sepsis. Has any of your drs tried you on the prescription medication to help with this? For the life of me, the name of the product escapes my brain this morning.

I am very happy that you are staying on top of President of that hospital. I know the hell I went through with my dad when he had heart surgery. He was inpatient much longer than usual for the surgery. An example, after surgery when he was allowed to eat some food, the people that delvers the food trays wrote on the paper on the wall that he ate 100% of his meal, several times. He was not touching the food, none. He had few teeth & couldn't chew anything, meaning he needed soft food. He was not capable of picking his own food & I was not allowed either. Third time that happened I lit into his cardiologist about this happening. He was shocked & went up to that nurses desk, I heard him all the way back to my dad's room. He ordered nutritional shakes 3 times a day. But believe me, that incident was nothing compared to the negligence of that hospital. I mean absolutely nothing.

Yes, this is your story of your journey & I am so happy that you chose Healing Well to write it too. I just checked, you have had over 25,000 views of your journey & I honestly believe you have helped another person or persons by writing it.

Has your son gone back off the grid? How is your husband doing with the diet situation? I know your son has the very best interests at heart wanting to help his dad. You know, I would have the very same feelings you have about your son choosing to live a completely different style. More & more people seem to be doing this. I have often wondered what triggered them to change their way of life. I know its no consolation but at least you got to see him over the holiday. He is much stronger than you realized, as mom's we see our kids differently than anyone else in the world. Never give up the hope of him returning to main stream living, he may get fed up one day with living off the grid.

It has been a very long hard road to get where you are today. If you are done with fill ups, how often will you need to see the drs? You are hanging in there like a trooper.

I am doing so-so. These cold front are just sending my pain levels into a tailspin. In January I caught the bad stomach virus, was in bed 5 days. Ended up in ER the first day. I woke up at 5:00am throwing up, the dry heaves would not stop. At 2:30 off to ER for IV meds. I ran a fever for 3 days. As soon as the Tylenol wore off it kept coming back. I have not been feeling well the past few months & just could not put a finger on what was going on. Yesterday at my PM dr appt they took my BP, 172/102!! A little later they took it again & it was 152/102. That is way too high. In Jan. it was up but nothing like that. Back in the summer I dropped one of my BP meds, it was dropping me too low. Dr was ok dropping that one, I was on 3 at the time. Anyway, I have an appt with my cardiologist in March. ER said to follow up with my PCP, no way am I going there, their office is full of people with the flu. There was some changes on the EKG done in ER & my PCP would say go see your cardiologist anyway.

Please keep me posted on things. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 2/19/2018 9:28 PM (GMT -6)   
Susie, that sounds dreadful what your father went though, and I'll bet there's a lot more you didn't say. Yes, I am keeping on top of the hospital. I got a call today from someone in hospital customer service confirming something, and she ended the call saying my "concerns" will be forwarded to the administration, and someone will be in touch with me. Let's see how long that takes!

I don't know why I said in my last post that I was seeing my PS the next day. Totally wrong! I don't see her until next week. The scar cream compound is working I believe. Originally I got it from my mastectomy surgeon for the 1.5" scar from the port removal. I brought the creams in to my PS at the last visit and asked if I could use it on my mastectomy scars (which are very minimal) and on the newly stretched skin to try to prevent stretch marks, and she said yes. And it definitely worked on the port removal scar, and I HOPE it will be preventing stretch marks on my newly stretched skin. It's hard to tell if it's making my mastectomy scars even more minimal.

Also, you ending up in the ER sounds like a big deal to me. How are you now?

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 2/21/2018 8:08 PM (GMT -6)   
Susie and all--- I really do have chemo brain! I DID see my PS today. And the right breast, the one that had to be replaced, is done. There's no more skin to stretch. She did add a little more to the left one, and boy does it hurt. This is my last visit with her until sometime in mid May-- I need to come in about 8 weeks before the one year anniversary of finishing radiation. At that time we will schedule the surgery date for any time after July 11th. I'm getting closer to the end!

My off the grid son is still with us! He is obviously trying to figure out what to do with his life, or he would have gone back already. With his help, my husband has lost ten pounds! He wants to lose ten more, so he's keeping at the diet as best he can, and trying to take more walks and occasionally will lift a few weights.

Our A/C died yesterday. My husband tried to fix it all day by watching YouTube videos, which has worked in the past to fix the A/C as well as some plumbing issues. But not today. So it's 85 degrees in the house and the repairman won't be here until sometime tomorrow. I do NOT take heat in the house well.

Best of health and positive thoughts to all.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 2/23/2018 12:22 PM (GMT -6)   
E, I have never done chemo, but sometimes the brain fog is out there, lol. An example, & please correct me. Not long ago, it seems like you signed a post & stated your name is Linda? Did I dream this or what? Regardless, I tried going back & looking & found nothing, ha, ha.

You are so close to winding down this chapter of your life. Its been such a long journey. However, you have prevailed & found an inner strength in yourself that you did not know existed. My mom had radiation & the skin on her back looked sunburn & leathery. Thats the best way I can describe it. Like you, I am not sure if the skin will change back. I wonder if some of your scar cream would help, just a thought.

I am impressed that your husband has lost weight. That is great. I am sure your son is also pleased with this too. I am leaning towards your son went through something that made him question his life in general. Going off the grid as he did he proved so many things to himself. I would like to think one of the most important lesson he learned is being self reliant. You have to admit his life style, just everything changed like flipping a light switch. It sounds like he came out a much stronger person. You would be amazed at the ones out there in this generation that do not have a clue about life & cannot handle becoming adults. I have seen this first hand, up front close & personal. They just can't handle life. My daughter tells them, going to school & working is called life. Learn how to support yourself & be independent. She tells her ex husband's daughter, if you are not going to attend school you need to work a full time job & quit living off of relatives (we call her the trust fund kid). Too much money has been wasted on her going to college, she gets dropped for not attending classes. My daughter says its a generation of lost kids. My daughter's BF, has 2 grown kids that are the very same way. The money that has been spent & wasted because they can't handle it, are you kidding me. So many opportunities thrown away. I will get off my soap box, lol.

The food thing with my dad & that hospital was minor compared to the atrocities that happened during his stay. Fell out of a wheelchair & laid his head open, needed stitches, should have never been left unattended, was tethered to a bed, managed somehow to get loose & fell out of bed not once but twice. Transferred him to a rehab unit on a Friday. Rehab called me & said he does not meet our requirements for rehab, we are not equipped to handle a patient like him you must get him transferred back into the regular part of the hospital. Ever attempt something like that at 5:00 Gave him an anti-psychotic drug that made him psychotic & nuts. He was hallucinating like someone that was not with the program at all. They had the frigging nerve to ask if he was alcoholic because he was acting so crazy. The man had not had alcohol in over 20 yrs. The heavy sedation & over medicating left to the nurse's discretion was the final straw. I managed to get him in a rehab hospital. After their review I met with the head dr & the first words out of his mouth was "your father has been heavily over medicated" & we are in the process of removing those medications. In less than a week his mind returned just as sharp as it was before surgery. One thing I noticed on his floor, lots of older patients & no matter what time of day or night these people were knocked out. They slept through their meals & many were too weak to eat. Those darn nurses knocked them out so they didn't have to deal with them. Like your situation so much more involved. Now this was at one of large leading hospitals!! This should never happen to anyone. You have no idea the hell I raised with that place & his drs. Never let something like this slide.

We had to replace the AC at the lake cabin. Should have done it first instead wasting all those service calls, lol. Had 2 different people come out & give 2 different stories on what the problem was, both were wrong. I do hope yours is fixed now. Our weather is nuts right now. Tuesday was warm, by late night cold, sleeting, a couple of tornadoes all in 24 hours. We have had rain & flash floods for several days & its icing over at night. A lot of people west of us lost power because of the tree limbs breaking under the weight of the ice. We only had some ice on bridges & overpasses. Crazy Tx weather, changes in a minute!! We are on our 5th day of rain, suppose to get a short break on Sunday. My yard is like a swamp, its awful. I am ready for warm weather.

Time for me to get busy around here, lol.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 3/3/2018 10:25 AM (GMT -6)   
Susie, you are not losing your mind. I did indeed post that my name is Linda. Not too too long ago. Like you, though, if I go back with the intention of finding a specific post, I NEVER find it. EVER.
And like you, our great minds think alike, lol. I have been using that scar cream all over the radiated breast (after I asked my PS if it was okay to do so). I think the skin is betting a better texture and is lightening up. Whether to credit the passage of time, or the cream..... I think the cream should get more credit as the improvements have come much quicker once I started the cream.

Our weather is all over the place, too. Not as severe as yours, but enough so that you have to have both your summer and your fall clothes available at a moment's notice. My son in DC is getting the effects of the Nor'easter, as they call it, and school was cancelled and 650,000 in his area, including him, have no power.

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 3/10/2018 9:45 PM (GMT -6)   
I can't believe it's been so long since I wrote. I am not keeping up with my creams as diligently as I did at first. It's supposed to be twice a day, but now I'm only doing once a day. It's hard to do because I am putting the cream all over both breasts, not just on that little port scar. And it's very greasy and I'm not supposed to wear a bra with it on, and whatever shirt I have on becomes stained.

But the good news is I know the creams are still working. I notice it especially on the radiated skin. It is becoming MUCH smoother, almost normal. And the color is fading as well. So if anyone out there gets radiation and is unhappy with the color or texture of their skin, I definitely recommend that you ask your doctor for a prescription compound cream. what I got is 2 creams. They are supoosed to be mixed together in one container, but my insurance wouldn't cover that cost. So I put the first cream on, which is Fluocinonode 1%, rub it over the area for 30 seconds, the the other is just called "scar gel", and that's the really greasy one, in a pump bottle, and I put that on top of the other and rub it in for 30 seconds.

I see my onc next week for her to check my blood work. I hope nothing is off a little causing me to have a scan, ultrasound, or any kind of test.

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 3/21/2018 1:04 AM (GMT -6)   
So i’ve been applying these two scar creams for awhile now, and I have to say I am impressed. I started out with pretty great results after my PS was done with me after the mastectomies. But these creams have taken the great results to a higher level. As I was applying the creams earlier tonight I thought, “these are perfect looking breasts!” LOL. THEN I got a bit down thinking that when I have my next surgery, probably in July, to switch out the expanders for the implants, exactly WHERE will the incisions be. I’m pretty sure the incisions will be large, as the hard base of the expanders seem to be almost the whole circumference of my breasts. Then I’ll be looking at months more of putting these creams on daily, so that I can then again become nearly imperfection-free.

My, my, I am sounding very picky and entitled, LOL.

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 3/22/2018 10:23 PM (GMT -6)   
I forgot to mention that my blood work came back normal. Yay! I didn't need to schedule an ultrasound or CT scan, whatever, to find out if something's wrong all because some #was slightly below or above normal.
My WBC count is still on the low end of normal, but no biggie.

Unfortunately I didn't get to enjoy my perfect boobs for long cry
Just when the weather is getting warmer and I no longer had to hide the hideousness of my right breast, I was finally able to enjoy wearing tops that have a scoop neck or V-neck. Welllll, not anymore! I noticed and felt something hard under my skin, going diagonally on the right boob up to almost the lower part of my neck. I took a picture of it and sent it to the doctor to see if she thought I needed to come in. Of course the answer was yes. It's a muscle. Some how the expander moved ever so slightly and allowed this particular muscle to look like its straining to escape my body. The expanders are put in under the muscles, just like implants are. But why this particular one suddenly looks like it's trying to escape my body, is a mystery. Other than the expander moving a tad and shifting how the muscles lay, the other possibility is that through my weight lifting I strained the muscle and caused the shift. I only lift 8 pounds. Just enough to keep sagginess at bay, but not enough to bulk out my arms.

On another subject-- my complaint to the hospital regarding how I was treated when I was paralyzed, I finally got a call from the litigation specialist today. The call happened to come when we were driving home from our impromtu trip to the PS today, and my cell phone only had 4% battery life. So she agreed to call me tomorrow morning. I am normally such a positive thinker, but for some reason I am thinking the worse. That she, or the legal department that reviewed my file, decides "this was really not too bad, the lady is just exaggerating." But i'm not. Every word in my complaint is true, and all 5 of the people i have now let read about what happened, are horrified and can't believe they could behave so badly to me. So, I shall pray to God that the folks at the hospital have the ability to empathize and truly understand what I went through, and continue to go through, as I have PTSD.

Wish me luck tomorrow. I do feel a bit intimidated speaking with her. But I have the truth on my side and a couple things they did to me were BAD, by anyone's standards.

Best of health and positive thought to all.

Post Edited (exqualls) : 3/25/2018 1:02:08 PM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 3/23/2018 12:32 PM (GMT -6)   
Well, the call to the litigation specialist went as badly as it could. It ended with her saying the hospital feels they have no compensable responsibility to me.

So now i'll go ahead and tell ya'll what happened. The bad part of my story happened when I was going through chemo. That's not fun as it is. I was bald, and my reconstruction of my right breast had gone badly--the tissue expander had failed, so my left breast was full-sized (with no nipple yet though) and the right side was hideous--not just flat because the expander leaked and was empty, I was covered with scars from the surgery. It was all bumpy and caved in at the same time. For awhile the expansion had worked and my right breast was growing.....then it got a leak and so became as flat as it was just after the mastectomy, but with the tissue expander still in there, which is very oddly shaped. So you could see the outline of what looked like the lid of a large jar, and then since some skin had stretched out when the expansion was working, now that it was "flat", that stretched skin caved in. So on the left side I had a boob with no nipple and on the right side there was the outline of what looked (and felt like) a lid, plus caved in skin, plus the scars, and plus the lump from my chemo port was on that side just above the breast area. The whole right side of my chest was a nightmare. No one had seen it, just my plastic surgeon. My husband had not seen frontal nudity since before the mastectomy, and even I couldn't look at my chest in the mirror. Just getting dressed gave me enough of a view (and a problem to cover).

So when I suddenly became paralyzed from Guillain Barre Syndrom, i was taken to the same hospital that did my mastectomies-- Morton Plant in Clearwater, Florida, to a different department, of course. To a department, or ward, whatever, where most of us were paralyzed or in some other way unable to do anything for ourselves at all. It was written on the board next to my name "2 max". I asked what that meant and was told it meant that I required the maximum effort from 2 people to get anything done with me. My husband sat by my side during daytime hours, so I wasn't mistreated when he was there as a witness. But at night, no one would answer the call button for usually up to 20 minutes, seemingly for any of us 2 max people in this ward, as i heard so many people yelling for nurses, or even crying/sobbing for help. When I'd press the button for help a voice would say What do you need? And I'd say to go to the bathroom.....but then 20 minutes and much longer would go by before I got anyone to help. Lots of nurses and aides would start to come by, but when they saw the "2 max" they would say, "i'm not willing to work with a 2 max". I heard "I'm not willing" so many times, it felt like a script. I began to feel like such a burden.... so rejected, and insulted, and belittled..not worthy of a nurse's or an aide's attention.

So one time when someone finally did help me get to the portable commode, which was at the end of my bed, in clear view of the hallway door, which was wide open, I said nothing about the open door.... I felt too grateful to be helped to the commode at all, and I felt a kind of shame for being a burden. It seems weird.. I mean, I was sick, I had a disease that paralyzed me AND I had cancer and my chemo interrupted and my reconstruction failing,,,, but hearing "i'm not willing" so many times, I was just full of embarrassment and shame for being a burden to them. I'm on the commode, the open hallway door,......and the aid decided to take my gown off over my head. Full frontal nudity!!! When anyone could be walking by or into the room. He hadn't asked my permission, warned me, or do anything to respect my privacy. I was stunned into stone. That's how I am... when something so unreal happens I get shocked and stunned into silence. I was already paralyzed into not being able to react. This is part one. I have to take a little break before writing about the second hideous thing that happened to me there.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 3/25/2018 7:58 AM (GMT -6)   
Linda, I have been kind of MIA lately, its another story. I have been reading your posts, I hope you will keep writing about this experience, more later.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 3/29/2018 10:00 AM (GMT -6)   
Susie, I was wondering about you being MIA, and fearing it might not be something wonderful like a vacation. Saying prayers for your and your family, and hoping to hear from you soon.

To go on with my story, which is very hard for me to write about, my stay at Morton Plant boiled down to me hearing "I'm not willing....." by so many nurses and aides, I lost count. Not just about myself, but all the 2 Max patients. It's difficult for me to criticize this hospital or the doctors and nurses and aides in it, because in all other departments everyone I've dealt with there has been superb. And I don't mean to frighten anyone who is reading this and is facing breast cancer. Staff who handle breast cancer patients are wonderful! Compassionate, loving, always there for their patients. The fact that in my last post I reported that an aid ripped my gown off over my head, revealing the ugliest full frontal nudity in the history of the world, is something I don't believe ANY other staff would do, except for this small group of nurses and aides working with paralyzed people who apparently are sick of their jobs, tired of having to stretch and strain and lift people who can't do anything for themselves, including wiping their butts. Sorry to sound so crude, PLUS, I'm not trying to make excuses for these people who were not willing to help the paralyzed, but when they did, they did so with a fed-up attitude, and no caring or compassion for their patient. That was their job. If they weren't willing to do their job, and do it compassionately, they shouldn't have been there.

So......there were 2 events that happened during my stay there that have scarred me terribly-- in fact, have given me PTSD. One I've told you about, the disrobing. The second one I'll tell about in just a moment. I just want to preface by saying it was set up because of how over the course of nearly 2 weeks I knew that the nurses and aides on the night shift were not willing to help, AND when help would arrive it would be after a long wait, and the person(s) "helping" would be doing so with shade in their eyes and a clearly disgruntled attitude. It's unlike me, as i have a strong ego, but apparently being paralyzed and enduring 12 days of being made to feel like a burden, as someone no one wanted to help, but the second traumatic event there happened because of me not wanting to be a burden to anyone. I was so tired of feeling embarrassed to always need help, and from people who so clearly did not want to help. Obviously it takes a long time for me to get up the nerve to even write about this....I'm dragging out saying it, as it was so horrific to me, and reliving it now, just in the time it takes to write about, is likely to set off one of my PTSD attacks. But I took half a valium, so here goes.

Okay, so being paralyzed from the hips down, my legs were like concrete pylons--all I could experience from my lower half was extreme weight...they were dead weight, and in my mind I visualized them as concrete pylons. I was due to be transferred to a different hospital the next day. In the morning two WONDERFUL people from the hospital's physical therapy department worked with me. My arms were less paralyzed now, it was mainly just my hands that were still paralyzed, along with my concrete pylon legs. The 2 physical therapists, using belts attached to me to help lift me off of the bed actually got me in a standing position! I was so happy. I didn't think it was possible! it only lasted a second or two before they helped me back onto the bed. So, that night when I had to go to the bathroom, after I had pushed the button for a nurse, and waited an inordinate amount of time, I decided to try to do it myself. Using my forearms to push my torso up, which took a great deal of effort......oops, I've got to run to a doctor's appointment. I will finish this later today.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 3/29/2018 7:11 PM (GMT -6)   
Continued---
so it was night, same old story, hearing lots of "I'm not willing" and having the call button not answered in anything CLOSE to a timely matter. I had to pee, the portable commode was just at the end of my bed. After no one had arrived after pressing the button and telling the voice on the other end that I needed to use the bathroom, the idea of me being able to stand up, as the physical therapists had got me up earlier, I decided to try to go to the commode on my own. Using my arms I lifted my torso from the bed. Doing that was harder than I ever thought it would have been. It took a whole lot of effort but somehow i was able to turn my torso and with my arms, force my concrete pylon legs off of the bed. I felt nothing. Then at great length, I had to use my arms to raise my torso up off the bed ever so slightly (it was all I could manage) and then inch my torso down toward the end of the bed. It wasn't even an inch at a time... probably more like a half an inch. My pylon legs just dragged along with me as dead weight. I began pressing the call button again because I realized this was going to be harder than I thought. But in the meantime while I was waiting for someone to come --lol--I continued to half-inch myself down the bed. By the time I got to the end of the bed, I could see that it must've been a "shift change" as all the nurses were gathered RIGHT outside my open door, which is what they did every shift change. Since I had finally gotten to the end of the bed, and the commode was just in front of me IF I stood up out of bed, my plan was to stand up, then twist my torso around so that I would drop onto the commode and do my business. How i would get back in bed was never a thought. I just wanted to empty my bladder a whole lot sooner than would happen if I waited until someone showed up and was willing to help a 2 max.

However, by the time I got to the end of the bed I think I knew that this was something I really wasn't going to be able to do. So with all the nurses right outside my door, I started yelling "Nurse!" No answer, not a glance in my direction. So I did it. I used my arms to lift my torso up off the bed, and i was basically in a standing position. It didn't last a millisecond before I knew I was in trouble, and my concrete pylon legs gave way underneath me and I went straight down, just like the Twin Towers on September 11th. I'm saying that literally. I'm a very visual person, and literally as my two concrete pylon legs crumbled under me, at the same time I envisioned the Twin Towers, right next to me, as they collapsed and crumbled, I collapsed. I didn't CHOOSE to think of the Towers, it's just the vision that my brain had, probably since paralyzed folks often describe their legs as useless, concrete pylons. I was still seeing the dust from the collapse of the Towers when I finally screamed bloody murder for help, and turned to see what had become of my lower half. I fully expected to see dust, and crumbled parts of me. It's funny how the brain works that way. Logically I guess I could have realized (even at that time) that legs cannot crumble into the dust and debris as did the Towers, but logic was nowhere. I honestly was SHOCKED when I saw that my lower half was indeed NOT dust and crumbles. But my feet and knees and ankles were all in unnatural positions. If you're as old as I am and watch football, maybe you remember the Joe Theisman leg break. HORRIBLE to see. Even the announcers are squeamish sounding whenever a replay is shown of it.

Nurses finally arrived, and I can't envision how I was put onto a gurney, I can only remember what I heard two nurses say. One said "why didn't her mattress alarm go off?" and another said "and how did her bed get moved so far off the wall without that alarm going off?" I'm guessing that all my "inching" my torso down to the end of the bed caused the bed to move a bit away from the wall each inch of the way. I remember feeling embarrassment and shame and so much regret that I had surely made my condition even worse. I expected that every bone in my hips, legs, knees, ankles, and feet had numerous fractures. I remember crying silently as I was wheeled to xray. I made myself WORSE, more of a burden, needing even more care than I did now!! But by God's grace nothing was broken!! I have no idea if I was covered in back and blue bruises, or if the awkward collapse tore a ligament or tendon, etc, because I could feel nothing. But I cannot express how grateful I was that nothing was broken. A miracle.

Sooooooo, I have developed PTSD. I didn't know I had until 2 counselors told me. I see the counselor provided for free from the breast cancer center, and through our discussions it came out that every time I feel a weakness in my legs, or a nerve shooting up, both of which happen often, those are triggers that bring my brain, my vision back to the dual collapse of both my own legs and the Twin Towers. I always see the Towers when I remember my legs collapsing. Do you know how often I'm forced to relive not only the hideousness of my own fall, but to also relive the Towers collapsing? All the memories of that day in 2001 come back at the same time as the horrible memories of being paralyzed in a place where I was ignored, where I heard "I'm not willing...." so often that it made ME feel badly about myself, and shame, and embarrassment for being a burden. And I'm a person with a strong ego! It's pretty impossible to make me feel bad about myself, but they succeeded. There are so many triggers that set me off to relive these events and horrible, horrible memories and feelings. So, that's it! That was my experience being paralyzed at that hospital. The next day, after my fall, I arrived at a different hospital as much of a "burden" as I was before, but the staff here, where I stayed for 3 weeks, were FABULOUS. It still took 2 people maximum effort to help me do anything. But when a call button was pressed it was answered right away.... by professional, caring, compassionate people who never made me feel badly about anything. And each time I needed to go to the bathroom, the 2 people would put me in a wheelchair, and wheel me the few feet toward the large bathroom in my room, then they would help me out of the wheelchair and onto the toilet. (never a portable commode or bedpan here). All while respecting my privacy. A hallway door would never be open,and the nurses and aides would make a point to look away, or have something to cover me if needed.

My hands were still paralyzed. They had to wiggle my underwear down for me to use the toilet, which is NOT an easy thing to do to a person with paralyzed legs. They had to wipe for me. You get the idea! And they did it all while keeping my privacy, and always being cheerful and happy to see me.

I've babbled on and on, almost nothing related to breast cancer and this forum at all. I guess we could make the case that if you get cancer, you may think "well, this is it. this is the bad health problem I'll have to deal with"...but watch out..... something else, something worse, can still happen. I have learned personally and by hearing other patients' stories and from doctors, that the course of cancer treatment is never predictable. Things will always happen to set back your time line of treatment, or you may have to switch to a different treatment plan, you may have to postpone your own treatment because of a family member's crisis...... it's just always something. Hopefully, everyone else out there with cancer reading this does NOT come down with GBS in the middle of their treatment. Or ever. It's extremely rare, so chances are no one reading this will get it. Unfortunately, it can recur. Things that can trigger a recurrence include surgery, an infection, or injury. Well, I'm definitely having at least one more surgery for my reconstruction. And since folks with GBS can never get a flu shot again, or any vaccine, or even a tetanus shot, chances are that some time in the decades before I die I will get an upper respiratory infection, and certainly injuries because I plan on being as active as I can be, and sometimes, accidents happen during adventurous activities. I'm also more likely to get infections since I have no lymph nodes on my left side. I stress out about the many things that could set off GBS again, and boy, do I fall into a panic. I see blackness all around me and know that I am paralyzed and no one will help me. I hear the voices saying "I'm not willing"..... This is my PTSD, and I am trying to get over it. The doctor I saw today specializes in helping people cope/recover from PTSD.

I'm worn out! And my fingers are still partially paralyzed so all this typing is a real strain. I hit the wrong keys so often it is kind of funny, If I ever didn't try to find all my mistakes and fix them before I submit, all I'd be posting would look like mumbo jumbo.

Best of health and positive thoughts to all.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 4/4/2018 8:03 AM (GMT -6)   
Linda, unfortunately, what happened to you is truly a common practice in the medical community. This is something that has gone on for decades. We can be a patient in the one of best hospitals in the state, but get on one of those floors such as the one you were on the ballgame changes completely. The nursing staff is just pathetic. Many of them have not an ounce of empathy or respect for their patient. They act like we are intruding on their time, when it's their freaking job they are being paid to do.

I have been in many different hospitals unfortunately in my city. Out of 8 different ones, I received excellent care with one!! I was inpatient in 2016. The 4th day the dr in front of the nurse said I want PT or the nurses to get her up walking in the hall several times a day. I was considered a fall risk so had to have someone with me. I was gotten up one time only by the nurse. When I asked when I would be walked again, he said we are short handed it is not going to happen. I told the dr the next day, you release me today, I was informed they are short handed & walking me is not going to happen. I got released. So, it does not matter what the drs order.

In 2013, the dr in charge of my care which was a hospitalist we have to deal with now these days. She was absolutely the worst dr I have ever seen in my life. Keep in mind when I was admitted through ER, it was discovered I had thrown a blood clot that hit my left lung, I have COPD & am on oxygen, I had a mild heart attack & was unresponsive. My family was told if I did not wake up soon I would not make it & to call any out of town family. There was also something about a chemical problem with my brain. When she found out about my implanted pain pump she went completely off of her rocker. She called my PM dr who hung up on her. My dr said she was crazy. She put in my medical records that I had accidentally overdosed!! You need oral medication to do that, a patient cannot do anything with an implanted pain pump!! My heart dr & pulmonary dr listened to this nut. After I woke up several days later, she informed me the pain pump needed to be taken out that I did not need it, lol. I let her have her rant, I calmly looked her in the eye & said you are fired, do not ever stick a foot in my doorway again. She went out & told the nurses. They had to scramble & find another dr to take over. All of this is in my medical records. My first visit to the cardiologist & lung dr, they were absolutely shocked to see me when they walked into the room. They admitted that they thought based on what she wrote in my records that I was someone that abused pain medications, basically sat around doing nothing all day but taking pain meds knocking myself out. They both asked me how did you get here today, I said I drove my car here, just like I always do. We sat & talked about what my normal day is like. I got an apology from both of these drs & their attitudes towards me changed greatly. To this day, I get angry over this. Crap like this & what you experienced should never happen to a patient.

I had a neighbor that was an RN at one of the big hospitals. She was over the orthopedic floor, in the administrative duty. Every day she received a call from the administrator asking her what patients could be released to go home. Her job was to review the charts & then convince the dr the patient was ready to be released. The fewer days each patient was in, the bigger his yearly bonus was for keeping hospital charges down. He would then call her later in the day to see how many patients got released. This is something the average patient has no idea about. The hospitals tells patients its your insurance.

I just truly wait until I am on my last leg before I will agree to go to a hospital. Every time I have gone it turns into a fiasco that should not be happening. But, I no longer sit & keep my mouth shut, I speak up for myself. I have done with both of my parents. Its pathetic.

I need to get busy around here for now. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 4/4/2018 8:44 PM (GMT -6)   
Susie, I am horrified by your post. It has taken me all day after reading it to respond because it set off a PTSD attack!! It is exactly what I have begun to fear for my future (having never thought of it one iota before). Being helpless in a hospital, ignored, at the mercy of people who are far from qualified to be in the healthcare industry. I can't believe this is widespread....happening at "good" hospitals everywhere. I was thinking it was only at the rare, uncertified "home" where someone with no qualifications takes in seniors and charges them, but ignores them as they rot with bedsores.

I keep hearing the crying and screaming from the other patients in the hospital, being ignored. Oh my goodness. This can't be my future. Until cancer I've always been in excellent health. My other stays in the hospital were due to the birth of my kids or from injuries (not disease). Being an athletic person, and planning to continue to be one until the day I cannot anymore, I presume there could be an injury or two.
Things that can make GBS recur include injuries, surgeries, infections. I'm starting to breathe heavily now and my throat clenches up just typing this. GBS coming back is the same as being in a black pit, totally helpless, crying silently and hearing voices saying "I'm not willing to help".

I am really stunned that this goes on as much as it does apparently. You complained and got your situation taken care of. My situation naturally resolved itself as I was set to be transferred out of hell to the wonderful hospital --HealthSouth-- the following day. By the time I was able to face what had happened to me, and I added 6 pages of "additional comments" to the hospital questionnaire, it was four months later, mid-August of 2017. Since I've sent out my comments I have wanted the hospital to acknowledge that their treatment of paralyzed and severely obese patients is right out of the dark ages. Everyone who knows me considers me "the strongest person they know"...... but 12 days of that gave ME, a post traumatic stress disorder! I arrived at the hospital with one disease, and i left with a new one, one they caused. Are they allowed to give patients other diseases and let them leave the hospital? Like MRSA? Or E. Coli? Or is PTSD a disorder they don't believe is real? Do they want to tell that to a therapy group of PTSD survivors? It sounds like I'm "on a soapbox"....just calling out a rallying cry for outrage just for the sake of hearing my own voice. I could not be more unlike that type of person. This is the PTSD talking!

Geesh, with all this writing and thinking about it, my head is filled with images of what could happen again.... if not from being paralyzed due to GBS coming back, but what about when I get near the end of my life? We'd all like to think we'll be active right up until the end, and then die in our sleep at home, or some variation on that.

But that's really not likely.... especially for someone like me with so very few family members. Husband, 2 sons. One son may end up off the grid again, maybe forever.... The other one is very close to me - now- but who knows if in 30 years he or his wife or kids would want to "take me in"...

You know a huge part of me never wanted to write about GBS on this forum at all, and I did limit much of what my PT and recovery have been like, but I have gone on about it more than I ever thought I would on an unrelated forum. And I BARELY could bring myself to say I had not such a great time in one of the hospitals while being treated for GBS. So now I'm babbling on about my stupid PTSD, while there are women out there with breast cancer. I vow not to bring it up again.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 4/5/2018 10:23 AM (GMT -6)   
Linda, I am sorry that this subject has caused you more issues. I hope at some point you will begin to feel the more you get it off your chest the better it will be for you, rather than trying to stuff it way down inside. I for one & am sure many others will appreciate you writing about the GB experience. It is very much a real health issue that not many know about.

The healthcare industry has really gone down the tubes in my opinion. I have had too many instances of things happening over the years to have the best attitude towards the entire mess. We are not suppose to get political here, but I firmly believe once we were forced into what I call "managed care" through our private health insurance it was a game changer in the care we receive. Before we had the old indemnity policies 80/20 until you met your deductible. Drs could be drs & do what testing they felt was necessary, our quality of care was much better. Our drs did not have some goof ball with no medical training telling him how to be a dr. Even our hospital care was much better then. We didn't have a shortage of medical personnel in the hospitals those days. Now, they run with the fewest people possible, patient care is the pits & the hospital administrator is more interested in his big bonus yearly. All of this at the expense of the patients. As you can tell this is a huge thorn in my side.

My brother was inpatient at Health South here. He was in a horrible one car accident, coded at the scene. Once stabilized he was careflighted to Parkland, it was the closest level 3 trauma center. The only problem we had with Health South is he had a trach, for whatever reason the staff could not keep this in mind. So when he pressed the call button of course he couldn't speak. That was a problem. He did receive excellent rehab there. He was in so many different hospitals & rehabs for 4 long months. After his accident Health South had their big shake up & we lost our only inpatient facility & several outpatient ones.

My family is small too, I do have concerns about getting older but I just try to take things one day at a time. I hope to never be dependent or a burden for either of my kids. I don't have a guarantee for tomorrow.

Now, I am rambling, lol. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 4/13/2018 1:50 PM (GMT -6)   
I just wrote a super long post and LOST IT. My fingers often hit the wrong keys and I've had this happen before on this site. I have no idea which finger is hitting what wrong key, buy it is frustrating to have everything I'd written disappear. Someone more knowledgeable with computers probably would know how to get it back, but not me. I don't have it in me to rewrite all the paragraphs I just lost.

Anyway, I'll give it a try in a day or two.

Best of health and positive thoughts to all.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 4/13/2018 3:49 PM (GMT -6)   
Linda, I do this all of the time & it is so frustrating. Another thing, make sure that you are logged in to HW. Been there & done that.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 4/17/2018 10:00 PM (GMT -6)   
I guess I’m glad i’m not the only one. But I am sorry it happens to you as well. A couple times when I think I’ve lost a post, after hitting some random key, I’m able to find my post-in-progress by scrolling up, but this time it didn’t work . It’s almost midnight here, so I’m not up for trying to rewrite all my paragraphs. I just thought I’d check in for a moment.
I have to say that I am getting more bothered by this pulled muscle or whatever it is that is over my right breast. It seems like I had just a brief moment in the year and a half since I had my mastectomy, where my reconstructed breast looked normal under normal clothing. How long did it last? Maybe only a couple of weeks, I’m not sure, before this muscle jumped out and looks really odd. I see it and it reminds me of cancer, it reminds me of reconstruction. During that lovely short time where they were normal, I felt like a completely normal, cancer free person.
I remember when I first got diagnosed with cancer back in August 2016, and I’d never never known anyone who had had cancer before. By talking to coworkers that I was friendly with, I found a girl, woman, who had just been through a double mastectomy and reconstruction, that I was going to go through, along with the chemo and radiation. And she was telling me about the reconstruction that was still yet to come, and her mastectomy had been two years before. I couldn’t believe how long this cancer process drags out. Two years will be here before you know it, and I won’t be done either, because after this surgery in July, I have to heal for I don’t know how long, before my plastic surgeon will attempt to either reconstruct nipples or do tattoo nipples, that apparently look 3-D.
Surgery, of course brings up my fear that that could trigger the disease I will not name, to come back. So I have this unpleasant part of my brain that is always reminding me that there something really bad that could happen, my getting that disease back.
My long post that was lost was about a couple incidents that happened that had me spiraling into a PTSD meltdown,. It’s cathartic to write about it, so I will do so at a later time. But it’s midnight here now, and I have an early doctor’s appointment with my counselor in the morning.
Best of health and positive thoughts to all.

Post Edited (exqualls) : 4/17/2018 10:05:09 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 4/23/2018 8:17 AM (GMT -6)   
It is really daunting at times when you think back to 2016 when your ordeal started. A friend of mine said some times it felt like things were dragging along & never ending. All you can do is look towards the light at the end of the tunnel. Then you can really celebrate!! I can't wait to read the post from you saying it's all done.

I don't know if I told you or not, but sometimes I am not logged in here at HW. I will type a post only to lose it because I was not logged in!! Oh, this one hacks me off, lol. Now, I try to make an effort to make sure I am logged in.

I will be glad when April is over here. Our weather is all over the place. It turns cold, tons of wind & then warms up. We can have a 30 degree temp drop in a matter of hours. The pollen is in full bloom so everything is covered in yellow pollen. I have a dark color car, its covered in yellow dust. Of course, everyone with allergy issues is feeling it.

I am off to run some errands this morning. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 194
   Posted 4/23/2018 8:50 PM (GMT -6)   
I understand about the pollen. Same thing here. I thought about you the other day when I heard the newscaster describe the wacky Texas weather.

I still wanted to post about my PTSD episodes, because it helps me to release some of the power it has over me. But I need a bigger chunk of time to write.

Best of health and positive thoughts to all.
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