CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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and no. Of course we don't mind you jumping in. You can be a part time crazy lurker.
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Jackie..........big hug to you........I have LE........did everything I could, ;but just got so annoyed I gave up....mine is my right arm....ugly and uncomfortable but the shit I was doing frustrated ne more.......
Just wore the sleeve when I flew to Chicago and bacjk.........I went off the Letrozole several months ago.....got tired of the SE's and thought "fucik it"......I;ll take w;hat ever ;years I can get, but at least I won't feel like I'm ;dying..............
Bad back, bad knees, dizzy, off balance..........felt good after I went off Letrozole, but of course tried Arimidex for 1 months..........SE's came back, and have not left..even after stopping...............should have left it alone, but I had to try another AI.....my bad........I wold not take Arimidex if someone paid me to..........
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Katy, gentle hugs and kind thoughts and prayers being sent your way. Slow deep breaths as you navigate this. Unconsciousable the way this was presented to you.
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Katy, I can't believe the LE expert had such bad "bedside" matters, so sorry it affected you like this. It's time to say screw her. I had LE, both truncal and the arm, about a year after surgery, there is just so much extra chit piled on us after we think we are "done" for a while, it's easy to go on overload. Do you want to borrow my license plate that starts with FYC? Hang in there. Keep posting and vent if it helps, sometimes a good cry helps too.
Sincerely
dsgirl
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Jackbirdie: thank you for letting me/us know! Driving while distraught is no good thing. Do have a nice sulk--what smellum are you going to use?
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Queen- I'm thinking lavender in Epsom with just a bit of mint. I have the tinctures so I can adjust. Something simple. And some almond Shea oil for softness and a few bubbles. So I don't have to "see" my disfigurement.
DSgirl-Yesssss!!!! And thank you. Your post made me go look at my charm bracelet. I added charms as I've gone along this dumbass journey. Each one means something very special. Not always in acompletely positive way. For example, just like your license plate "F" is for cancer. Sounds like a Sud Grafton novel gone haywire.
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thx Ducky and Rose. I know you meant what you said. It makes it almost all better.
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Lavender with a fillip of mint sounds perfect: soothing/calming, but with a hint of crispness for refreshment of the spirit/body. (I don't know much about perfumes yet, learning from a friend, but I try.) Still don't know where that LE expert got off.
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Katy: I've been wearing a compression bra pretty much 24/7 now for almost year. It really helps with the truncal LE. I buy the 'Sydney' from Wear Ease, and here's a link. http://www.shopthegirls.com/. There are other good ideas on the BCO thread Grrrrrrr I Hate LE. I wear sleeves when I exercise or do repetitive work (like gardening) and when I fly since I don't want the LE to spread. Hope your soak is lovely.
Slow - thanks for letting me lurk-a-lot. Proud alerted me to this thread & I know a number of you ladies from other threads. I hope to continue lurking. It might help w/my family cancer - you know the one where the kids, or DH or older parents are being real jerks.
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Hi Minus! Glad you came!
Katy! I read your post and was outraged, and was trying to make guesses about which dr or person would make such an ASSessement/ ASSinine statement, while rapidly scrolling through everybody's great responses, and I was right! It was your Le 'ist! O the f??? Yeah, well she is not qualified to make a statement about your mental health, a bit. Not one bit. And, if you ask me, as far as I can see here on ctown, you respond with love and sharply biting humor, I can't tell you how many times you have made me laugh, and great observations and witty words. All those things show what a 'state of mind' you have, and what your character truly is: A kind and loving and generous person. Shame on her, just shame on her.
I have truncal le too, like Ducky, Ive' just about given up on mld, it does no lasting good.
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Hi Tomboy............and everyone else who is sick of this shit.....................I call cancer.............the gift that keeps on giving.............but guess what my motto is.......and I live by it no matter how stinkin shitty I feel.........it is not going to win...
When I get down I say to myself
I HAVE CANCER......IT DOES NOT HAVE ME............
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Two of our crazy women have things going on tomorrow:
queen, good luck on your simulation!! You will be in our thoughts!!
pennsygal, sending all our collective best wishes tomorrow. Please let us know how the squish-o-gram and MRI goes. Gentle hugs to you!!
Time to address this bozo you encountered today:
Katy, what kind of person could say such things?? Sounds like whoever it was needs to see their own damn shrink. I think a swift kick to the butt will help contribute to THEIR pain. What a dumbass. Sorry...I typically don't curse too much, but this really ticked me off.
Sweet Katy. A very big lesson I'm learning along the way is what's on the outside pales in comparison to what is on the inside. I also had to learn to live with this different body that has been ravaged by disease. Most of us are in the same boat and can relate to how you feel. Sending you great big hugs across the internet. You hold that beautiful head up high. You are a smart, funny wonderful woman, inside and out. Don't ever let some fool make you feel badly about yourself. We are all traveling this path together and we will all get through....TOGETHER!!
Minus, It's great to see you here. Welcome to our thread. I hope you stick around!! I've always enjoyed your posts so much!! Crazy women unite!!!
You tell them Ducky!!! We just can't give in to this beast!!
I hope Lucy checks in soon. She was so worried about her tests on the 24th. Waving to you Lucy!!! Love you!!
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Will try to remember to report in, if I'm not too worn out from the craycraydreams.
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Minus- thanks for the link. I always wear compression. Sometimes I put the ace bandage on I left the hospital in. It helps with the pain. I have some Velcro front closure compression corset type thingies. But they are so pretty I don't wear them in the summer when I might sweat in them.
You all have made me feel a lot better. It was a horrible experience, but she didn't say anything I didn't already believe about being disfigured. I am. She was advocating revision surgery which might help with the pain, might help me be more comfortable with my body image, thus helping me be more compliant in my own treatment, such as manual lymph drainage, applying salves, etc. I don't defend her. I just realize I need to spin this to the positive and do what I can to heal. Inside and out. But she had no right to comment on my mental health or suggest I was the cause of the pain. Fuck that. I feel like I have a hangover. I'm sure tomorrow will be better.
I will consult with a PS. But I really don't see at the moment how I could possibly undergo another surgery. Thanks to chemo, I have two cataracts, and must deal with that this year also. I am terrified of going under the knife again, and although through sheer grit I've lowered my pain medication input lately, I'm very concerned about what another surgery would do to me in regard to continued opioid usage. I am in pain all.the.time. It never goes away. It would be hard to agree to another surgery without a pretty strong promise of reduced pain and reduced need for pain meds. I don't know if those assurances can be made.
Thank you all again for the loveliest and kindest words ever said to me. You crazies heal me.
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Katy, I have been thinking about this a lot and hoping you are feeling a little better now. It feeds into something that has been on my mind for a while: Nobody tells us that it's our job to look past the caregivers' manner to get the information/support/treatment we need. It's one of the things I find hardest about the journey. Your LE specialist definitely trespassed a professional boundary today (NOT her job to comment on your emotional state), and yet she said some things that maybe will help you resolve some nasty, intractable problems you've been having post treatment. I hope so. You deserve a break (and baked goods and freedom from pain and the chance to feel good about your body).
I have an MO whom I think is quite competent and cares an awful lot about her patients (including me!), but her bedside manner is abrupt, and she's not a good explainer. I have a BS who's completely charming and experienced and has a great reputation, and he's not a good explainer. I spent a fair amount of time on the phone today, because while both these people agree about my course of treatment, there were bumps in communication and questions I couldn't answer after the last visits with both of them. If I had not spoken up, the slight contradictions in what the two of them were telling me wouldn't have been picked up and the result would have been delayed surgery. The MO's nurse even admitted that while the doctors talk, they don't always communicate the results to the patients.
It seems to be our job sometimes--or even always--to separate what we're being told about our disease and treatment from the personality of the caregiver. It doesn't feel fair that we have to do this on top of everything else, but that's the reality. I invariably leave the MO's office or the BS's office and for that matter, the LE therapist's office, feeling like I'm in 2nd grade and all the big kids understand and I don't. After a while I work up the courage to send an email and fill in the gaps in what I was told (sometimes after I research here!). Do I want to do this? Um, no. Is there someone else who can do it? That's the thing. (I love my DH, but I'm better at this sort of task.) I think that this is a basic flaw in medical training or maybe in the system. I have heard there are doctors who will sit for two hours and explain EVERYTHING, but that is certainly not something I've encountered, and I have to say it's hard to see how they could do this and still maintain a financially viable practice. There are others who can sometimes fill in the gap, i.e. social workers, chemo nurses. A couple of weeks after I started chemo, a nutritionist at the hospital was able to help me thread a path through the contradictory information I'd been given about SEs. But sometimes we run into these situations where we have to get information from a doctor or other specialist who doesn't have the gift of getting it to us in the right way. But we still need the information.
I don't have an answer to this contradiction in how we expect our caregivers to communicate and how they actually do so, beyond wishing they had more training in patient relations. But I'd be willing to bet that many of us have run into this issue in one form or another; it's why there are so many posts about people who are switching docs because of personality issues.
I've rambled enough. Tough day, Katy. Hope you get a good night's sleep and are able to pick up some pieces and move forward tomorrow. I bet some good will come of it. Hope so. Actually, I'm sure of it!
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Rainny- thank you for taking the time to out those very clear thoughts down for me. It makes sense. I I'll take from this what I need to and leave the rest behind, I have no anger. Only exhaustion and sadness at this point. With a tiny kernel of resolve that I trust will grow into a superhero's cape.
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Katy - we'll be spinning on your cape all night!!! Just so the darn dwarf doesn't come around & ask us your secret name.
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Katy. WTF was that 'person' doing she has no right to say what she did. Others have give plenty of advice. Just to add I have truncal LE and now can manage to do my massage. I also use kinesio tape not sure of spelling and find it really helps. Might be worth a try.
It took me a long time to look at my scare which was a real mess. It doesn't bother me now but it used to.
So to you and everyone else. Great big hugs.
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Katy-Outraged at that LEs comment! !! Who is this idiot? I am part of the ugly scar club HA! In fact I can smuggle jewels in my scar tissue. When my infected implant first came out I could see my own ribs and I had an ER nurse get nauseated so bad she had to get someone else to finish packing my wound. But I am finally healed shut
And I couldn't really look at it at first either. But now I am kind of fascinated and too tired of complications to go for revision too. Katy- we are beautiful and strong to get through this! Those scars that shock the medical world should cause them to be on awe of us. I am going to eat a pastry in your honor of the beautiful person you are. 0 -
Still waiting for the doc to phone back to give me ativan...hmmm. Sept 2nd is too far away!
I am going to look for some of those books to read during these sleepless nights!
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Katy,
Ggggggggrrrrrr to the LE "expert" doc with no bedside manner are sadly too frequent. I'm dying to say what I think but I've never been known for PG13 dialogue in fact I have a total potty mouth . It kind of makes you wonder how some of these characters get into the medical field. I went to see a breast cancer oncologist at USC Norris Cancer center in LA when I was diagnosed with triple negative 25 years ago and went to see him for a second opinion. Big mistake. The guy totally concurred with my. "Poor prognosis" and basically had me dead and buried. I got out of there damn fast. I've got scars all over and belong to the club 25 years ago when they put you back together with big metal staples screw those guys who can't take it. I hope you can get some of the LE stuff solved by someone who knows how to talk to people.
Clarm,
Hope you get your Ativan soon. Waiting on test stuff is never easy. I take ADD mede and so Ativan affects me in the opposite direction. It actually has me climbing the walls they gave it to me during my first round of chemo at Cedars Sinai back in 90 and everyone agreed never again. I had my MUGA test this morning and am due for my herceptin on Friday so I hope it all comes out ok so I can get my medicine.
Ducky,
You are a pistol! Keep firing away!
Rainn,
You need to be the official counselor for Crazy Town you really laid it all out there in such a clear way. We all need to be our own best advocates and they just don't give enough time and effort to training these people who talk to us about such serious matters.
Shout out to Slow, Queen, Alyson, Minus, Penny's, and Yo! to Tomboy!!
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Superhero cape for Katy
Sula, hope your EF numbers are good to go for Friday.
clarrn, waiting is so difficult. I hope you're able to find some good distractions. Don't turn on any Crazy Town roads!!
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ME!!!!!!!!
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Good morning all
Alyson that is so funny!
Rain that was a beautiful post.
Katy I hope you are rested today. It is quite a task we have all been given. I vote that you wear your pretty 'corset' compression tops. Feeling good in that way can go a long way to get the psyche over certain hurdles.
Clarn I hope the ativan eases your pain.
Queen and pennsygal hope your tests go as easefully as possible.
Thank you Slow for remembering what is 'up' for everyone. I hope I can become more skilled at keeping it all straight. Right now I'm just working on keeping my own head straight
Sula I'm right there with you on the potty mouth. It's probably best that I am typing rather than dictating these posts.
Minus I hear you on that 'family cancer' thing. My family has a huge case of that. I think theirs all went straight to their brain.
And thanks rain and Katy for all the book reco's i am definitely going to pack Prodigal Summer for my trip to Martha's Vineyard at the end of September.
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Katy, sorry you had to endure your LE therapist's comments. It is way out of line to comment on a patient's mental and psychological state unless they're mental health professionals. Even then I hope they're trained well enough and have better bedside manner.
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Katy - I can't stop thinking about your awful encounter. I'm sorry that happened and I hope you can find someone better.
I'm waiting to be called in for the mammo. New heights of crazy: some guy in the parking lot called my husband a cracker - because he was waiting to allow a woman to take a parking space. You know - a woman with cancer!!
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This morning I woke up with right middle toe pain (second day in a row). I managed to avoid neuropathy with taxotere now this almost 8 weeks PFC. What is this??? Tamoxifen side effect? Oh and dry mouth too.
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Taking whatever good comes out of that encounter and leaving behind the rest, with a kernel of resolve, is just the right approach, IMO. You are human, of course Katy but anyone who has to deal with what you are dealing with is more than a bit of a Superhero also, and Slow's beautiful cape is well deserved! Wear it with pride!
When you do meet with ps I suggest asking him or her if the reconstruction surgery would address the pain. Seems likely that the two are related (?). That might be a factor for you in weighing whether to go through it.
and yes, the communication issue that Rain describes so well is a big problem. I can remember twenty or twenty five years ago, when I worked in a medical related field, that lots of folks thought electronic medical records would solve that issue. Hah! Doesn't do a damn bit of good for the information to be there whether in a file or on a computer if the providers don't read it, think about it, analyze it from a professional standpoint, and learn how to talk about it and discuss it as a team with other providers who may have very different educational backgrounds, experiences and perspectives. And of course that communication takes time. Something that never seems to build into the process.
As for the one leg longer than the other thing, yes, that is just out there. How the fuck does she know? Did she take measurements?
Sala: Oh yeah, the potty mouth thing...I wouldn't worry, I thought that *was* the language of choice here in Crazy Town?!
xoxo Hope all the crazies have a good day today.
Octogirl.
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Katy, love your bracelet. I have one sad looking one with the only pendant being no cuffs, needles this arm, I think mine needs some sprucing up.
dsgirl
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