The dumbest things people have said to you/about you
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When I got my BC dx, I had a prescription to have a colonoscopy done, but had not done it. Immediately I felt like cancer was invading my entire body, and I was freaked out. I called the biggest hospital in the area and spoke with a nurse (can't remember which wing), and told her I needed to know of the kindest and best gastro in town, since I felt like I couldn't take a bad bedside manner, given my new dx. She told me she really shouldn't say anything, but I think she felt some pity, and gave the name she'd go to in my position. I met that doctor and he was a jewel. He listened to my fears, explained everything. For me, I needed to get that out of the way so I could focus on the BC. On the other hand, my dentist wanted to take care of a crown, and I was way, way overloaded for that one. No way. Had to wait. THAT felt like too much prodding and needles.
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Around here colonoscopies are done assembly line style--you do not meet the doctor until the procedure starts unless you make a fuss about a pre-procedure appointment, and you don't get the results until the report is mailed to your PCP a few weeks later. For myself, after seeing what my father went through (stomach cancer), I will never allow chemotherapy to be put into my body. Just the thought of another 2 hour/10 poke session to get an IV started has given me nightmares and has had me awake and out of bed since 2 am (3:35 am now). What happens if they lose the IV during the procedure? I've had a bowel prep once before, and spend the night lying on the bathroom floor crying from the severe abdominal pain and covered in s---t since I couldn't stand up to get on the toilet, only to be told that "no one has that bad a reaction." I guess I must have been imagining it? And I've had one too many procedures where "you won't feel a thing" that were excruciatingly painful to believe that line anymore. Why should I go through all this crap for a screening test? I truly would rather not know about another cancer until it's too late to even consider treatment. I do not have the strength to go through that he## again.
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for me, i did the test. upper and lower all together. with my gastro problems afterchemo made it a neccesity. i also am starting the nightmare of fixing the teeth that have broken..all results of chemo. i won't neglect tests, if they're needed, esp scans to make sure im not harboring the BEAST.. i am so afraid of A recorrence, im healthier now than ive been in a longtime. the iv is always the worst, so i always get a butterfly, and in my hand.. the crook of the elbow just retracts when they try to stick it, "rolling veins" is what they call it.. i have all kinds of trouble in the beg.. don't overreact, etc.. but i always say "look at my chart" and "no" you're not doing it w/out a butterfly...
if i God forbid, have to have any more stuff, they're talkinfg i might need to put iv in my foot, because of le. ive avoided that so far!! but i won't ignore my body. i don't want to metastisize anywhere else!!..we're all different, but i figure ive been poked and prodded, so to have peice of mind, pole somemore if you need to. i don't go looking for tests, but i don't run away, either... just me, though.... 3jays
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Native, the prep for the procedure is pretty rough. If you've had problems before you may again. The first time I prepped it ripped me apart, the second time, not so much. But the second time the doc said I wasn't clean enough. Hey, you gave me the drugs!!
The IV is a hassle, but they put it in in the treatment room and it happens so fast you don't even realize it. I have trouble veins like 3jays, mine bob and weave and duck and roll. For some reason, I didn't have a problem either time I had the test. Perhaps because you are out for such a short time it is more superficial....they know they don't need the IV unless it is an emergency. They don't set up the whole IV, just the needle. Once they inject you it's very fast.
I can honestly say that it is the most painfree test I've ever had. You can't even imagine where they have been in your body because you truly don't feel it!! I am amazed and slightly pleased as I was expecting cramps and/or bleeding but your bowel doesn't act like your woo hoo and bleed just because something alien got inserted!
You will be starving when you wake up and you can eat what you want. Yoghurt is recommended to build up the bacteria in your bowels again, but that's all. Here, we get the result from the tech who does the test as soon as we wake up. If you have to get a polyp tested, obviously you have to wait for that.
Give it some thought sweetie, you're worth it!
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Sounds like our colonoscopy experiences are as different as our BC experiences...
I had my first one 2 years ago, at the urging of my PCP. (I was 56, and supposedly past-due for one.) I did manage to postpone it until almost 6 months after my last dose of chemo, so my GI tract had healed. I had no risk factors (besides age) for colon cancer -- just some hemorrhoids I already knew about.
The prep was awful. I had the 2-dose Phospho-Soda, which is rarely used anymore because it causes kidney damage if you get deydrated.... and, who can stay hydrated when they have fluids coming out of both ends? (I threw up an hour after the 2nd dose.) But, well, ... it worked. Once I got to the outpatient surgery center (mine was done at a hospital), everything went very smoothly. The GI doc came in to talk to me in the pre-op area and again before snooze time. Afterward, he stopped by to tell me the results ("Just the hemorrhoids -- nothing else. Nothing to sample, even!").
It was "assembly line," but there was plenty of interaction. I was interviewed by a nurse when I stopped at the clinic to pick up the prep solution. I was interviewed again by phone 2 days before the procedure, just to be sure everyone was on the same page. I told them about my LE risk on the left hand/arm, and they said, "That won't be a problem!" When I got to the hospital, someone put a bright pink "LE" wristband on my left wrist and showed me the note at the top of my chart. I told them I sometimes got nauseous from Demerol (they said they would be using Demerol + Versed), and they said, "No problem! How about if we put a little Phenergan in your i.v., to cut the nausea?" And, that's what they did. I mentioned to the anesthesia nurse that the veins in my right hand and arm had seen a lot of abuse from chemo in the past year; and she said she wasn't worried, because she was used to starting i.v.'s on people whose veins were almost invisible because of dehydration. The i.v. insertion was easy -- truly painless.
And, contrary to Barbe's experience, this surgery center starts a saline drip once the i.v. catheter is in. Their theory is that anybody coming in for a colonoscopy is probably dehdyrated and needs the fluids. They don't have time to restore fluid balance (something they remind everyone of, before they let you leave: "DRINK DRINK DRINK!"); but at least they provide maintenance fluids during the procedure. The anesthesia is "twilight", but it knocked me out completely (I think). The Versed means you're not supposed to remember anything during, or even a few hours after, the procedure (something they tell you ahead of time). AFAIK, I didn't wake up mid-procedure ... at least, I don't remember waking up! I was alert soon afterward, because I remember being asked whether I'd like juice or a coke; I remember being handed the mug; and I remember the conversation with the GI doc when he came in to tell me the results.
My dh had his first colonoscopy at that same place, with the same GI doc, just last month. His prep was the "GoLytely" stuff -- a huge volume, but without the kidney risk of Phospho-Soda. Just as awful, I think; but his worked, too. And, since I was his designated driver, I got to watch all the pre- and post-procedure stuff this time. Smooth as silk. The doc came in before dh got wheeled to the procedure room for the i.v.; and he came in again to talk to me while dh was still waking up (since he figured dh might not remember anything he was told at that point anyway).
My dh hated the whole thing, even though it went well. He hates doctors and needles and medical procedures. Me? I kept telling myself, "Hey, at least it's not chemo! At least, it's just one or two days of discomfort (a medical euphemism for awfulness), and then I can eat and drink and feel great again!". And, that was true. I will probably do it again when the date turns up on my iCal 8 years from now. For motivation, I just imagine how much more horrible it would be to have colon cancer, compared to breast cancer. Really.
otter
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outsidethebox- Is your next surgery exchanging TE for implants because that surgery is so much easier? Very short and, for most, very little pain. I wouldn't say I looked forward to it but I did look forward to being done!
Julie- Sorry about your TE. That sucks!!! You have a right to vent, vent, vent away!!!
Alpal- Maybe if I start calling the colonoscopy a kaleidoscope I won't dread it as much!
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Colonoscopies -- All different, indeed!
I have a thing about liquid meds -- i barf. I have managed to get the stuff for cat scans down, but i am pretty sure i wouldn't manage 2 liters ... So when i was due for my (so far only) colonoscopy 7 yrs ago, i said -- fine, but the prep is impossible. The nurse said, there are pills, if you prefer. I do!!! I've been told since that they don't advertise the pills because people gag on them (horse pills. As big as the Ca pills i've stopped taking.) It worked for me. The procedure was much as otter described hers - except when i woke up, the nurse said i tried to stop breathing .... (DH stays awake enough to chat during all 3 of his -- same doctor, same clinic.)
So for the next 3 surgeries (lumpectomy, hysterectomy, hernia) i told the anaesthesiologist i tend to stop breathing -- and everything went smoothly. Came the mx, i forgot to say anything. (There was a lot of delay and fuss about the wire and the radioactive tracer for the sentinel node, etc; by the time i saw the anaesthesiologist, i was exhausted.) I woke up to a beeping noise, followed by someone saying "Breathe. Breathe." This happened repeatedly - often enough that i decided, when i hear the beep, i need to breathe so they don't yell at me.... i don't know how long it was, but they took me into surgery at 10, i'm told the mx takes about 90 minutes, and i wasn't back in my room until 4 PM. It nearly killed my DH, who was in the waiting room and had no idea what was going on.
I hope my next anaesthesia is for the colonoscopy at age 70, 3 yrs from now. But whenever it is -- how do i figure out what they do differently when i do/don't try to stop breathing? And was i anoxic enough to affect my retinas, or was it coincidence that "retinal scarring" showed up that next fall? And how many neurons do i lose when it happens?
Despite the questions, I'm with the screeners -- better a colonoscopy than cancer. And this is one kind where they can find it *before* it is cancer - those polyps take 5 yrs to become invsive. And a colonoscopy catches 85% of the polyps.
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Using the pills for colonoscopy prep rocks - yes, they are big, but not much bigger than Caltrate or fish oil capsules. The prep result is the same as the liquid, but you're spared having to choke down yucky liquid. I've had two colonoscopies both with pills, and have told several people about using pills instead of liquid, and few people were even given that option by their docs. Not sure why most colonoscopy docs don't even tell people that pills are an option. Not everyone is a candidate for the pills, but many people are, but for some reason docs are not giving them a choice.
Just another example of how we as patients need to take control of our own medical care, as the doctors don't always tell us our full range of options. I wish it were not that way, but as all of us b/c patients know, it is unfortunately the way things are.
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My first time was with the liquid and I spent the night on the bathroom floor. The second time was with the pills and that's when the doc said I wasn't "clear" enough. Hey, your meds!
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Went this morning for my 2nd year diagnostic mammo. Check-in girl asks me for $368. I say that seems high. She says, "Well we'll be doing BOTH sides." I say, "Why would you do that when I had my left breast removed 2 years ago?" Oh. "In that case it will be $184."
Thought this would be a cute 1/2 price mammo story until the results came back showing new spots. Gotta see the surgeon Friday. Absolutely terrified.
Told (truly) wonderful DH. He says, "Don't worry about it yet. Could be nothing." Is this happening to anyone else? I swear I don't live in Could Be Nothing Land anymore,
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Imays, I'm so sorry. I understand the scary part--I went through that with my 6month mamo. On the bright side, although I had to have another stereotactic biopsy and another lumpectomy, everything turned out fine for me. I hope you will have the sam results.
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Was on the phone to my sister today and she mentioned someone who had "the bad" kind of breast cancer. I said "they're all bad" and she said, "you know I mean the one where you get chemo and rads."
Oh, so me getting a double mast isn't bad? Now I feel sooooooo much better!
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this is my first time posting on here, but I've read yours, and they are grrreat! Geez some people are so unthinking. All through my chemo because I was being so positive and "up" everyone else treated me as if nothing was wrong at all. I felt like crap and my daughter says if you got more exercise maybe your legs wouldn;t be so painful.
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mouser, ive had similair problems. i stop breathing, also. ive posted about it before. very scary! get a copy of yur records from that time from the hosp. go thru the trouble of getting info from anesth. included. i always bring info w/me when i go for interview for any surgery. i believe that has saved my life... 3jays0
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Barbe,Imays.. my question.. what the "H" is wrong with ple??? i know you can't being family, but wouldn't you like to?0
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it is getting crowded under there, thanks to uh.. me!!
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Throw 'er under! Not the first dumb thing she said. When I got my first bone scan she said "good, now you can move on." Ummm, move on from what????
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3jaysmom --
Thank you! How do you get info about the anaesthesia? I always ask for my medical records; all that's included is the report from the surgeon -- so how do i get them from the anaesthesiologist? I don't even know the guy's name! Does just asking the hospital work?Do i have to work thru the surgeon?
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There is an research liaison from NIH that comes to our clinic about once a month (she spends most of the day on the phone chatting, but that's another story...)
I have known her for a few years, and I have been open with my diagnosis with all. She looked at my breasts and commented on how high up they were, and that they were sticking out. I became immediately self conscious, and I said it's because these are my tissue expanders, not my implants...to which she replied, Do you need breasts? Yes, I replied, I NEED, WANT, and DESERVE to have BREASTS, THANK YOU!
I almost burst out in tears because I know they sit up high...and are hard when anyone hugs me. I'm glad for the hugs, because they are genuine. Why do people think it's alright to comment on another person's body? In addition, I have been told time and time again how big I am, how I put on weight....I don't get it. when I first came back to work, I just wanted to hide. or put a big sign on my back that says, I am aware I have put on weight. Thanks so much for pointing out the obvious.
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{{{{{{{{{{{{{{ Squidwitch }}}}}}}}}}}}}}}}}}
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<sigh>
Re: Research liaison from NIH, who shows up at squidwitch's clinic, looks at her breasts, and comments on how high up they are and that they are sticking out...
Squidwitch pauses, looking directly at the NIH research liaison, ... and says: "Wow. I had no idea your mouth was so big. It doesn't really look that big, but somehow you managed to stick your whole foot in there!"
Then squidwitch smiles and walks away.
The End.
otter
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Bam!
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Ba dum dum!
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Squidwitch
Isn't it amazing that someone can be given the job of Liaison and yet lack interpersonal skills? Probably has a lot of degrees but no common sense.
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Squid...that witch needs to be reported to her supervisor....her comments are so out of line and inappropriate....wonder if she needs boobs....maybe she wants to volunteer for a bilat!!!! (okay, now I may be out of line)....I love what you said I need, want and deserve......
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Suidwtich You must tell that STUPID persons boss about her. You MUST! She should absolutely NOT get away with making comments like that. I dont' care what profession she is and how qualitified she may think she is.... Thats WAY too much to take. In fact give me her number and I'll call her.! HA! OR as research LIH opens up her mouth...Squidwitch says:" My boobs may be perky for now, but in month or so they will be beautiful...Unfortunately... YOU WILL STILL BE STUPID!!!!
Kate - Yes Hopefully having recon in January. I had an expander on the left where I had my mast, but had to have it taken out, as developed blood clot and infection. PS said to see him about 3 weeks after chemo ends which is tomorrow, but I'm going to wait until the New year. Know what you mean, I'm kind of looking forward to it, as I LOVE my PS he is FAbULOUS, and I know he will do his best. Thinking of asking for a nipple, rather that tattoo...but still researching this.
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For Squidwitch to send to research LIH...
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Ladies,
Thank you Thank you Thank you! This is the same person I called to ask for help for BCMomof3, and she never called me back. She's a mess. It means more to me to hear my Sisters have my back. She can run on along and keep doing that nothing that she does so well.
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Imays- So so sorry about your new scare. I swear BC is like the Mafia. Just when you think you're out......it pulls you back in.
squidwitch- OMG....are your coworkers competing to see who is the bigger moron? I just cannot imagine ever commenting on anyone's body (because, first of all, who the hell cares?) but especially someone returning from cancer treatment. This is why people go postal at work! (((((((hugs))))))
outsidethebox- The owl is hilarious!!!!! Gonna have to save that one for the perfect occasion! Thanks!
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I know, I made it clear that my feelings were getting hurt. There have also been positive you gained weight comments too.... cultural and different from my view of myself. I still don't want to hear it, but I have understood the spirit behind it. I think they were thinking I would look emaciated. Some said you got big, you look good! So I can't be mad at that, I am of the culture that you don't comment on anyone's size. Pregnant ladies I say you look wonderful! and I wait until they are practically wearing a shirt that has an arrow with the word baby on it before I say a word. That's me.
But I was DREADING coming back to work, and the first nurse that saw me grabbed my arm and said, you got fat! And I watched her chuckling away. My response, yes, the chemo for my cancer puts on weight. I am not above throwing the silencer right back
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it is getting crowded under there, thanks to uh.. me!!