Starting Chemo March 2015
Comments
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No worries, I'm dealing with it fine, doesn't itch or anything. It's the callousness that I object to the most, honestly. There are a few people at my oncologist's practice that have about as much personality as a piece of wet cardboard. But most of them are nice.
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Will you have an opportunity to do an evaluation of the personnel?
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Ksusan, count on it. Whether they ask me or not, I have a typed up list to give to the oncologist, who usually jumps on concerns. I think my oncologist is 100% competent, it's just she has a few staff members who need a big kick in the ass. I have given her constructive criticism in the past (I always do things in writing that way my comments can't be misinterpreted or "disappear") and she has taken action, so I know she will. I have glowing compliments that are very pointed to specific areas where I think some of the staff truly excel at their job, so the report I give her isn't all negative lol.
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I have said it a million times. Some people do not belong in the cancer treatment field. I am sorry, Theresa,
I just tried to call and find out where my friend could go to get her diagnostic u/s. I told her to go to the lady I went to because she was really good. So I called the center to get her contact info. I swear the lady had about an 80 IQ. I asked her 4 times if this is the number my friend should call to schedule. She kept saying I needed to get my order from my doctor…..asked her again…and again and finally she understood.
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shaz - my understanding is that compression sleeves/gauntlets/gloves are not to be used to eliminate swelling in an LE affected limb, but rather to maintain control once swelling is subdued. I would think that bandaging and a night sleeve, or a machine (like Flexitouch) might be helpful in reducing swelling so that the garments have a better shot at keeping things under control. Here is some info:
http://www.stepup-speakout.org/wrapping_bandaging_for_lymphedema.htm
http://www.stepup-speakout.org/nightgarments_for_lymphedema.htm
http://www.stepup-speakout.org/pumps_in_lymphedema_treatment.htm
Is there a larger metro area that may have more access to in-depth treatment that you can get to? I don't have experience with this level of intervention other than being aware of it. I have been successful with MLD and garments, but the ladies on the LE threads may be better able to assist you. Here is a listing of topics - you might try the search function with specific questions and see what turns up.
https://community.breastcancer.org/forum/64
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Ha! I thought you were going to say "if cancer has taught me one thing, it's how to swear!"
sorry.......
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thanks SpecialK. I have been researching and everything supports what you are also saying. The clinic I was going to were apparently the best in my state. However I rang them for support yesterday and they were very rude. So I have now decided not to spend 2 hours each way to get there. I have never felt right about the place. It always just seemed like a money making venture not a health centre.
I have been feeling like I was coming down with something over the last couple of weeks and my arm has been warm. I didn't put the 2 together until yesterday when my arm started burning. I have an infection in it. The Dr has put me on double strength anti biotic. If it hasn't improved in 2 days I have to go back. I was ringing to lymphoedema clinic to ask there advice. But the receptionist just said.. I don't have time to talk to you. I'm busy! I hung up feelings so angry and alone. I rang back and cancelled my appointment. I feel so isolated with this.
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Oh, Sharon. I am sorry. Is the infection a result of the lympedema?
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shaz - one of the issues with removal of lymph nodes in the axilla is that the mechanism of removing or filtering baddies from the arm is removed. That is the reason that precautions are recommended for those of us who have had nodes removed - like wearing gloves for gardening, avoiding animal bites, treating wounds, etc. Cellulitis, and other types of infection, are serious and often require strong antibiotics - definitely stay on this until you see improvement.
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I'm assuming it's either from the puppy or when I picked blackberries. I'm at work. I just want to go home and curl up and feel sorry for myself.
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Aww….can you go home?
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I'm so sorry, Sharon... Hugs. 😢😢😢
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Sharon, big hugs. Put my necklace on and know I'm sending love from the other side of the world!!!
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Sharon, I am sorry you are dealing with that. I hope you can curl up with a nice treat of your choice tonight and pamper yourself a bit for putting up with this crap. Keep us posted
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Hi guys
Here's a picture of the rebuilt bracelet. I hope y'all like it.
I'm going to enjoy it for a week or two and then it's on its way to KSusan.
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Hi all, finally checking in after being off boards for a few weeks.
Sharon, I am so sorry you are dealing with an infection. It just sucks and is not fair at all. Hugs to you.
I read through some old posts and saw someone mention their "anniversary " is 2-9 which is today. I, of course, can't remember who but I'm thinking of you!
I have a hard time keeping up with reading posts but I think of you all often. I am glad to be on the FB group and friends with lots of you there so we can keep in touch. I'm coming up on my one year anniversary too. I thought I could just ignore it and reflect on how awesome I did but my stupid depression and new menopause isn't letting me. I've been seeing a counselor for awhile now so that helps. Just so many horrible memories associated with this week. The biopsy. The diagnosis. The MRI and the first visit to the breast surgeon. I hate it all and wish I didn't think about any of it. My realization that I will never be the same has been smacking me in the face. And it hurts. My counselor reminded me that I get to choose who the "new" me will be. I keep thinking about that.
I love the reworked bracelSue!!
Hugs to all!!! Has anyone seen Amber on any boards? I have thought of her several times but I don't see posts from her.
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I pmed Amber awhile back. Been worried about her. But she didn't respond.
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Carrie - great memory. My cancerversary is today, and it is not an easy day for me. I'm really surprised it hit me so hard. Getting through Feb, March (surgery 3/17) and April were harder for me than the chemo and radiation that followed. But, on a video I recently shared the link to, one of the slides said "Every day is not good, but there is good in every day." And that is SO TRUE!
Hugs to all.
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Sharon, that's awful. I'm so sorry.
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Sharon...I'm so sorry. Hope the antibiotics are working and you're feeling better soon.
Sue...the bracelet looks nice! The cancerversary is so hard. So many memories and not the good kind. Thinking of you...
PB
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Sue- the bracelet looks fabulous! All of the charms stand out so well! I'm sorry about your anniversary hitting you so hard. I think we all get that and it is a bit surprising that it's diffucult to frame it in terms of victory or accomplishment. I guess it just is what it is, but I like what you said about a little good to be found in each day. I will try to focus on that.
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Thanks, Katy. Everyone asks what I'm going to do to celebrate. I don't really feel like celebrating, since the flame's still licking my ass, so to speak. So glad you all understand :-)
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Hey! I must have heard you calling through the universe. I'm here. I have been down and just a real shit ass as far as being good support here. I just found out I have a fractured hip from AVN or ostencrosis caused by the chemo. I have had ongoing hip pain and now I know why. So i have to use crutches but I'm jacked from the stroke on my left side and just a big fat mess. I hate being in pain alll teh time. then my mom had the balls to say she believes I CHOSE this life. LIKE I SPIRITUALLY had mafe a decsion before birth to have a miserable life. She meant it. OH MY GOSH. She is freaking insane. I am flabbergasted and now I have lost her as support. I can't talk to her if she feels I chose this How warped. She told me to wuit signing up for diseases. I am way off course here I know.
I hope to read back and get caught up. You are never far from my thoughts. I think of you ladies and hope things are lookin up. If not I am going to think only the positive and wonderful thoughts for your healing.
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Sharon I just saw your post. I hope you feel better very soon. I'm so sorry your sick.
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Amber,
I hope you can feel the support from this group and use it as a crutch as well. Stick around if you can and let us try to help out. Nobody here will stand for that load of crap your mom dumped on you!
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Amber- I'm so glad you can hear the universe calling... We all miss you and you don't have to catch up and read and worry about all of that.. Just know we are here and lean on us. You did not ask for this. Any of this. It is so hurtful your mom is treating you this way.
Please try not to isolate too much. I hope you are on the mend. Hugs.
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Amber, fuck what your mom had to say. Yeah, the old Italian swear monster is out in force today. People really don't get it.
You post here whenever you want, whine, complain, rant, anything you need. We all take our turns, you don't always have to be supportive, sometimes you can just lean on us, and lean hard if you need to. If this cancer crap has taught me anything, we all have strong backs to deal with the heavy load every day.
Hugs, and if I were there I would give you a big, smoochy hug, like until you got all warm and tingly inside. Right now my arms are around you, massaging your head from the constant brain strain, and we are talking about silly, frivolous stupid things, anything that pops in our heads.
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Thank you Italy, I feel better already:) Wish we really could it would be fun! I need that attitude today.
Katy thank you too. I tend to isolate when I have nothing to offer. I won't go into how that habit formed lol. I am going to guess that i wasn't the only one told to leave the room if I was going to cry.
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This is a place to come to cry.
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Thank you Sloth and Ksusan<3. This year was supposed to be better dammit.
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