Mental Health is not an issue here

saltycandy13

I have a hysterectomy scheduled for January 19 if I don't recover from the flu right now.

Today, I got a letter from the doctor's nurse who is definitely not playing with a full deck.  She writes that my pre op was days ago. Where has she been?  The hospital was notified I am running a high fever.  They don't want me in there.  Can't say I blame them.

She writes in the last paragraph, I have to discuss my biopsy or pathology reports on January 31.  

Why does it take so long and WHY do we have to suffer so long to see how far cancer has spread?  And what are we supposed to do in the meantime after being cut up with incisions both inside and out, having bowel problems, urination troubles and God know what else can go wrong.  Infections, depression, pain, fever, the list goes on and on.  And what on earth am I am being warned about?  I believe worrying about something whether it is health, money or losing your house is detrimental

 

He mentioned "Rectocele?"  I had to look it up.  I understand its a hernia from straining to go to the bathroom.  I have always had constipation.  Miralax is not going to work.  So much for that.

 

And all the while, these million dollar doctors are taking their weekends enjoying themselves with a Donald Trump like golf game.  Who knows, maybe they go to Mira lago?  Just a bit of sarcasm there but I don't see why patients have to suffer when I do not feel it is necessary to do so.

 

After all, we are playing with cancer here, not a hang nail.

 

So here I go getting upset and geeez, I can't understand why.  Who would get upset.  According to my husband a hysterectomy is a piece of cake.  Oh, isn't life wonderful.  I want to barf.  So he says to go see a shrink.  Well, it's against my religion and better judgment having had a bad experience with one lunatic years ago and now belonging to a faith that does not believe in shrinks, I have to work this darkside out myself.

 

Thanks to all of you I have someone to talk to

 

karen

saltycandy13

I second that

Evolo, I couldn't have said or written it better.   The whole thing is exactly as you state.  "Messing with the mind" is the true sense I get.  I have a birthday January 25 and a wedding anniversary the 24th of January.  How can we rest easy when we are SITTING ON PINS AND NEEDLES.

I have never believed in mental health issues because there is rational emotional thoughts and irrational emotional thoughts.  Now, we know we have rational thoughts, so they are discounting our feelings while they go out to lunch and you can't get a phone call in between 12 and 1 and sometimes they don't even come back until 1:30.  Emotional thoughts run high when we have to wait for a pathology report or some sort of "report" be it good or bad.  And then what?  Ready to take the bridge myself, husband tells me it's easy-peasy and not to worry.  Yeah, right.  That's what he said when I had the last D/C  He said they'd give me Provera to "bleed it out."  And nope, Atypical endometrial hyperplasia or as she lovingly described it, "pre cancer."  I got so upset when I left the office I forgot my expensive handbag.  I am luck enough to get it back.  At least they were honest there.  So this whole is like a ton of bricks that falls and I am under it.  Trying to dig myself out.  I don't know which end is up. 

 

 

 

saltycandy13

anxiety!

called doctor's office today.  Of course, no answer.  Probably they take the weekend off on Friday.

Northwoodsgirl

Fragmented health care and lack of care coordination

Oh SaltyCandy14! I can so relate to your experience, frustration, feelings and questioning. What we need is access to another uterine cancer survivor through the clinic, who can advocate, educate, explain and help us to understand the timing, process, treatment plan so we can manage our own expectations. I have often thought that if I had even one other woman who was a uterine cancer survivor to talk to in that period of limbo between being told you have cancer and through the whole 6 months or more of treatments. Some clinics and hospitals have “navigators” as you may know that help women with breast care. Health care is exorbitantly expensive and the clinics and hospitals mostly don’ t even have electric medical record systems that are connected so the various interdisciplinary care team can see what has been done and what is yet to be done. Thus sometimes we get communications from the clinic or hospital or insurance company where “the right had doesn’t know what the left hand is doing.”  This contributes to our anxiety and the escalating costs of health care. I sure hope your fever resolves soon. You know it is odd, we are told we have a life threatening disease but everyone from the schedulers to the doctors act as if it is “business as usual” because for them it is. They know what the process, timing and standard of care is ....we don’ t. We feel scared, vulnerable and angry. Why me? Why cancer? Why now?  Will my body ever be the same? Will my life ever be the same? Each  of us survivors have experienced this feeling of being in limbo and sensing that we need to start surgery, chemo and/or radiation ASAP- but the “system” doesn’t have the same sense of urgency. The wait is excruciatingly hard.... It’s kind of like the movie line-“I’m so angry and I’m not going to take it any more!” ( The line is from the movie “China Syndrome “ if I recall correctly. )

 

pinky104

 I have a cystocele.  As I understand it, my bladder had dropped due to connective tissue that weakened or tore, which lets the bladder get into an odd position.  My mother had the same thing and as I understand, sometimes the bladder can literally fall out of the body.  For a while, around the time I was having symptoms (bleeding) that got me diagnosed with cancer, I had to have a round donut shaped ring called a pessary put up my vagina to keep the bladder from falling out the urethra.  It also comes in other shapes.  I've since stopped having the pessary put in and removed for cleaning every 3 mos. because it was just too painful.  It's easier to get UTI's when you have a cystocele, but I'd rather deal with an occasional UTI than the pain of the pessary change. The condition hasn't seemed to get any worse since I stopped having that done.

I think the rectocele is somewhat similar to the cystocele.  It happens when the rectum falls due to damage in the supporting tissue between the vaginal and the rectum. 

I had a cystoscopy (where the doctor checks out the inside of the bladder) in 2010 to see if there was a "communication" (or opening) between the bladder and the vagina or the bladder, vagina, and rectum, as any hole in between those places can cause bacteria to get into the bladder and cause a UTI.  Nothing definite was found, although one spot at the top of the bladder was a little questionable. 

I'm not sure if a rectocele alone can cause UTI's or not, but if you get them frequently, it's worth asking.

Did you ask your husband how he knows a hysterectomy isn't painful?  He never had a uterus.  If he ever gets a kidney stone he can't pass, you can tell him the same thing.  Men are screaming when they get them.  I used to work in an office position in an ER and I could tell when men had kidney stones or had a death of a loved one because the screams were very similar, probably a little worse with the kidney stone.

My pathology results from my cancer surgery took 10 days to get.  My GYN/onc. thought I had ovarian cancer but he had the results reviewed by the hospital's tumor board, and their consensus was UPSC instead.  I had stage IVb UPSC with cancer in the uterus, both ovaries, the omentum, and a small spot on the small intestine.  I've since had a recurrence almost 7 years later where the cancer came back and wrapped itself around the outside of the ascending colon plus got into the peritoneum and the paracolic gutter.  I'm in remission for the second time.

I know the results take too long to get but maybe they're going before a tumor board at your hospital like they did at mine.  And probably most of the patients they see are cancer patients, so you end up in a long line of people who are waiting just like you are.  Throw in a vacation or two and the line gets longer. It's better to get the correct results than a decision that's rushed.  Hope it goes as well as possible when you do finally get them. And don't assume a higher stage always means a worse outcome.  Sometimes it does, sometimes it doesn't.   

saltycandy13

thanks everybody

for all your comments and stories.  helps me a lot feeling I am not alone in my feelings.  Sometimes I get the feeling I'm a Drama Queen or I think I am royalty feeling the way I do, then I discover that everyone is in the same boat.

Aside from the snooty women that are barely the age of consent answering the phones, they should have the problems we older women do and will have if they even live as long as we have!  That is my only comfort at times.

I guess we are on our "own."  But Karma does prevail and I am a firm believer in that.  For every nasty person who ignores our calls or doesn't give the right answer, they will get "theirs."  And rightfully so.  We are human beings and have the right to quality of life and mental well being just like anyone else.

 

With that said, I am going online shopping for a new pair of Christian Louboutin shoes.  Never LOSE YOUR SENSE OF HUMOR.  We are born with that little spark.  Never let that spark lose it's light.

xoxoxo

Karen

CheeseQueen57

Northwoodsgirl said:

Fragmented health care and lack of care coordination

Oh SaltyCandy14! I can so relate to your experience, frustration, feelings and questioning. What we need is access to another uterine cancer survivor through the clinic, who can advocate, educate, explain and help us to understand the timing, process, treatment plan so we can manage our own expectations. I have often thought that if I had even one other woman who was a uterine cancer survivor to talk to in that period of limbo between being told you have cancer and through the whole 6 months or more of treatments. Some clinics and hospitals have “navigators” as you may know that help women with breast care. Health care is exorbitantly expensive and the clinics and hospitals mostly don’ t even have electric medical record systems that are connected so the various interdisciplinary care team can see what has been done and what is yet to be done. Thus sometimes we get communications from the clinic or hospital or insurance company where “the right had doesn’t know what the left hand is doing.”  This contributes to our anxiety and the escalating costs of health care. I sure hope your fever resolves soon. You know it is odd, we are told we have a life threatening disease but everyone from the schedulers to the doctors act as if it is “business as usual” because for them it is. They know what the process, timing and standard of care is ....we don’ t. We feel scared, vulnerable and angry. Why me? Why cancer? Why now?  Will my body ever be the same? Will my life ever be the same? Each  of us survivors have experienced this feeling of being in limbo and sensing that we need to start surgery, chemo and/or radiation ASAP- but the “system” doesn’t have the same sense of urgency. The wait is excruciatingly hard.... It’s kind of like the movie line-“I’m so angry and I’m not going to take it any more!” ( The line is from the movie “China Syndrome “ if I recall correctly. )

 

Program

My hospital actually does have a program which you can request to speak to a patient with your cancer. I signed up and was trained for it. You know how many called I’ve gotten?  Zero!  I don’t know if they don’t publicized or if people don’t call. I’m fortunate though because everyone at my hospital from the custodians, receptionists, technicians and docs are mostly kind and compassionate. Somehow they’ve instilled that kind of culture. Yes they can be frustrating to deal with sometimes but I’ve never been treated unkindly. 

MrsBerry

Karen, your sense of humor

Karen, your sense of humor will get you through! I hope your fever resolves. 

My insurNce company will assign a complex case manager to clients with complicated medical needs, to assist with timely scheduling and questions, but you have to ask for one. Perhaps you could look into that kind of help?

Hugs, MrsBerry

Weeser1

saltycandy13 said:

thanks everybody

for all your comments and stories.  helps me a lot feeling I am not alone in my feelings.  Sometimes I get the feeling I'm a Drama Queen or I think I am royalty feeling the way I do, then I discover that everyone is in the same boat.

Aside from the snooty women that are barely the age of consent answering the phones, they should have the problems we older women do and will have if they even live as long as we have!  That is my only comfort at times.

I guess we are on our "own."  But Karma does prevail and I am a firm believer in that.  For every nasty person who ignores our calls or doesn't give the right answer, they will get "theirs."  And rightfully so.  We are human beings and have the right to quality of life and mental well being just like anyone else.

 

With that said, I am going online shopping for a new pair of Christian Louboutin shoes.  Never LOSE YOUR SENSE OF HUMOR.  We are born with that little spark.  Never let that spark lose it's light.

xoxoxo

Karen

Mental health is not issue:

Hello Saltycandy13,

I saw your post and hope Iam doing this right? A newbie here or have been reading for a few months. I feel the same way too! My surgery was November 17th and a total hysterectomy, vaginal with three little cuts. Everyone is different in their experiance but they kept me overnight and released in the afternoon. I was a bit sore but they gave me Tylenol for pain in the hospitol and sent a perscription home with me for pain. Which I had almost no pain. It was amazing! Still taking it somewhat easy at this point. So hoping your experiance is the same. 

Weeser1

 

evolo58

I have had abdominal surgery

I have had abdominal surgery before, when I had my myomectomy (I deeply regret that I just didn't get everything out then .... where IS that time machine when you need it?). Has your husband ever HAD abdominal surgery? Mine was open, so I don't know if you're doing the laparoscopic route (hopefully you are ... less pain, and recovery times are much better than open), but abdominal surgery can leave you sore as !@#$. I would hurt if I sneezed or coughed the first two weeks! (Again, though, mine was open, not laparoscopic). Yes, it gets better in a week or so, but you're a hurtin' cowgirl until then.

One thing I'm finding out is just HOW critical I'm getting with certain doctors and nurses. Now I see why some patients are really grumpy! I'm trying so, so hard not to be that curmudgeon medical personnel try to avoid, but it hasn't been easy at all. 

Yes, I know doctors and other medical personnel are human. Perhaps they had a bad day, or maybe they're not feeling well themselves. But I have been catching more blunders lately with more than one facility than I'd like to admit. More than once, I've had to correct them. For instance, I'm having this situation now with my second opinion, who keeps claiming that the insurance company is considering them out of network, and the doctor refuses to take me on as a regular patient. It took me a five-minute phone call to confirm that the practice is most definitely in-network, and I have no bleeping idea what they're talking about. If they don't want me, fine. I'll stick with my current doctor. But then, TELL me, !@#$ it. I have no time for games. I've also had to correct a couple of doctors and nurses re medical aspects. I know that they must see patient histories dozens of times in a week, but it's unnerving when I have to be the one pointing out an error. I'm a wreck about this as it is!

I'm almost ready to put post-it notes on my abdomen during surgery stating "CUT HERE." I don't want to wind up with a tonsillectomy.

From what I read, pathology reports can take a while. I think a week or two? That would coincide with the dates you got. That is fine, but if that is what your nurse meant, she should have indicated that.

I think that's part of the problem with me and my cancer, and maybe with many of us in general, from what I'm reading.  I'm guessing many, many of us. It's not only affecting our bodies. The obvious mistakes, unclear reports (my pathology reports raised more questions than answers and should have included information I've seen on others' biopsy reports to make certain things clearer), lack of answers, delays, etc. ... and yes ... all the waiting ... are seriously messing with our minds. And a shrink is NOT going to solve the problem. Medical personnel really need to get their ducks in a row. I can see why some things might take more time (such as post-surgical pathology reports), but other actions are simply careless, or the people behind them have no regard for patients who want something other than "answers for dummies" (referring to the "Dummy" book series, NOT patients themselves!) I kept asking my doctors if that's what I am getting in my online charts ... answers for dummies. I keep asking if doctors are getting better info, and I'm getting the impression they are not, nor are they asking for it. That's unnerving.

Hope that all the waiting will yield GOOD results once you get through your surgery and clueless personnel.

Fran

saltycandy13

thank you

All of you ladies are so kind, considerate and understanding, it is unbelievable.  And I thank you in more ways than you know.

And yes, my Priest said "Well, I'm glad you haven't lost your sense of humor."  I told him I never will.  I learned that a long time ago when Robin Williams (one of my favorites) played Lord Byron in his stand up routine and he said you had to stay a little "full tilt bozo."  And you are born with a spark of madness, and not to lose that madness or you lose everything.  I get down in the dumps then I go try on some new spring shade of lipstick.  Works every time.  Or maybe a diet Dr Pepper and a little Ed Sheeran.  I like that kinda stuff.

 

 

saltycandy13

Weeser!

Are you Wonder Woman?  It sounds like it!  God's Speed!