June 2014 Surgery Sisters
Comments
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Dear Purplegurll and Wizard50so sorry to hear about your path reports! I will pray for both of you for the strength to keep you positive and motivated!
Purplegurll if you need any advise or have any questions about chemo feel free to ask and I will pray for you that you will not endure any bad experience from it! I know it is hard to deal with... for me losing my hair was the worst emotional part as I was always so so proud of my hair but yeah it all comes and goes...! I have to admit I always felt nauseous after chemo but only for the first 3 days after the chemo, but never did I ever had the urge to vomit, but I watched what I ate and just let my body tell me what to eat and what not, follow your instincts, you will know what to eat and what not, I had 6 chemo sessions and to my own amazement none of them I reacted the same, some were bad, some were ok, the first 3 were great I felt good and were only under the weather for about 4 days but from chemo round nr 4 it all changed, I was sick for longer period of time and even today 5 weeks after my last chemo I still have some side effects but if that means I can live longer I will do it in a heartbeat again! Stay strong and stay positive that is all that helps us to deal with this card life has dealt us!!
I will have my path report on wednesday hoping for a clean report but starting rads on Aug1 so not going to skip that part, but like I said if that means I can live a couple of years more it was ALL worth it! Still to many things to do and to many places to see!! (I love to travel a lot)
Sending everybody loads of positive thoughst and energy and may you all find peace in dealing with this, always remember you are not alone we are all here for you!
Loads of hugs!
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Hey everyone...just wondering how range of motion is going for the June ladies. I had to start PT two weeks ago because I couldn't get my arms straight up and I have improved but think my one shoulder is frozen. Problem is now my left TE seems to have shifted and I'm thinking it;s from all the tugging on the chest skin the PT does.
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bethq, I've had no problem with ROM but I started doing exercises as soon as I felt good enough to do them which was about a week out she my drains were removed. I've had previous shoulder surgery so I had some exercises from that that I've done as well. Good luck with getting your ROM back. I know it can be frustrating.
I've had quite a bit of pain from my TE after getting my first gill on Friday. It's much better today than yesterday but sometimes it feels like the TE is pushing on my ribs and it hurts to breath.
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Hi Keri, yes my ps told me to wear the surgical one they provided 24 hours for the first 2 weeks then switch to a good sports bra with shelves.
What restrictions have you been told at 3 weeks post op. My ps said not to lift anything over 4 lbs and only short strolls outside but mostly take it easy. I went back to work last week for a few hours but my work isn't physical. I just can't stand sitting around. What have you all been told?
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I'm going to look into the genie bra today, thank you! Hope you are all doing well.
Jackie
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My 24 yo daughter had a breast reduction last July, and she bought a pack of 2 Genie bras after her surgery. So I decided to try on one of hers, and I like it for the most part. Now that I've tested BRCA2, I need to have her tested. I surely hope that I have not passed the gene to her. That would just break my heart, even though I know that she still at risk even if I didn't pass it to her.
My ROM is pretty good, but I still have some pain and discomfort depending on how I reach for things. I haven't had any PT and don't think I'll need any, but I probably need to start doing some exercises.
I see my MO on Thursday, and I think he's going to request an oncotype test. Just something else to be concerned about depending on what the score is - jeeze....
One love,
tp4ever
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turtle/Jackie, PS cleared me to either wear ace bandages or a tighter camisole or tank with shelf bra for another week. I will be three weeks on Wed. 7/16. He took stitches out of the flap on the boob also. He cleared me to go on long walks also. Still limited use of arm and no range of motion exercises yet. I see him next Monday, wonder if I will get first fill. This TE is a killer, all the damage radiation did to my ribs and skin, the TE lays on my ribs, and it hurts. Also cleared to take ibuprofen now, which helps.
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Hi Everyone, my thoughts an prayers go out to all who's path reports didnt come back like we all were hoping for. Deep breath, regroup and know that we are all here to support you. This BC crap is such an emotional roller coaster. It really make's one have to learn to roll with the punches.
I finally crawled out of the dark hole I was in for a few days. Thanks for all your encouraging words. When I got home from that post op I started taking only Advil 600mg every four hours just to see where I was really at pain wise. That is all I take but at night sometimes I'll add half a Percocet and of course I take a Valium if I start to spasm. I'm felling much better and can handle the level of discomfort. The biggest bonus, no more constipation! I'm also taking probiotics to try and get my stomach back on track. I read here on the forum and have been told that eating a lot of protein is key in helping to heal. My appetite isn't coming back very quick. So I've been struggling and having to force myself to eat. I have had a couple of nights where I was hungry and a a full plate but I need more of those. Going to look into getting some protein powder to add to things.
When I called to schedule my first Appoinment (day after post op) with the onc I was referred to the soonest he could get me in was Aug 26th. That made me have a melt down as I don't want to have to wait that long to see what's next. I pretty sure hormones but I'm also considering having my overies taken out too. I was hoping to have a game plan in motion by the begining of Aug not a week before I start back to work. I put a call in to my BS nurse and they are trying to get me in earlier. In the mean time I scheduled an appointment this Thursday with the onc I went to for my first opinion in the beggingng of all of this to see what he has to say. Not sure if a month and a half is a normal time line between surgery and seeing onc?
My BS is big on getting outside and walking. At the post op she wanted me to do 30 min 3x a day. I looked at her like she was nuts because I was such a hot mess. I started my walking 3 days ago. I'm doing 30 minutes 1x a day and will start to add on more. It does feel good to get out and get some fresh air. I do a lot of walking around my house. Whenever I'm on the phone I get up and walk around/pace and of course now that I don't need to be babysat 24/7 I'm doing much more.
My ROM is pretty good. I can't get my arms straight up yet but I do stretching and the wall crawl to try and help with that. My skin around the sides and under my armpits is sore and sensitive. I massage it in the shower and that seems to help a bit. My PS said I was not to lift anything heavier that 10lbs for 6 weeks and he didn't want me doing any strenuous over the head exercises or movements but it was okay to work on getting my arms/hands above my shoulders. The haredest thing for me to remember is to not push off things with my arms, it's second nature, but certainly more than 10lbs. My body lets me know though right away.
I go for my first fill on Wednesday. The PS put 100cc in at surgery. I'm pleased with the placement of the TEs and it seems to be healing up well. I'm a little nervous about the fill though. The last couple of days I've been having more spasms at night making sleeping a little hard. I think it's because I'm doing more. We shall see how it goes.
Sending healing thoughts to all! ((Gentle hugs))
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Keri, I hope I will get cleared to start walking distances again. I usually do about 3 miles a day with my dog. I see the ps on Wednesday for a fill and hopefully have the drain in my back out. I had one small fill last Tuesday when she took the drain out of the right side. I had radiation to the left side in 2006 and that is the side that is still so swollen and painful. It feels like the te is sitting right on my rib and rubbing it raw every time I move. I'm a little worried about getting a fill on that side.
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Joy yikes! 30 min 3 times a day is alot of walking!
Don't let the fill scare you, you will be fine. I was so scared I was literally shaking and I didn't feel a thing.
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Your ribs feel like the TE is rubbing and pushing on them because it IS. Until the muscle loosens up a little and the skin stretches a little, it will feel like that. After each fill I felt tight in the evening but Tylenol worked fine and I was fine when I woke up.
I didn't feel a thing during fills or for the first four to six hours. Since the skin is numb, you don't feel when the needle goes into the port. It looks scary though...just look somewhere else. I did not feel the saline going in, even on big fills. My PS kept pressing on my skin all during the fill. It would turn white where he touched, then gradually turn pink again. He said that is the capillary refill response and it's critical for the doctor to pay attention to it so he doesn't overfill and cause you pain. That's why he never has a particular amount in mind for each fill. It just depends on how much your body can take before a delayed capillary refill response shows the blood flow to the skin is starting to be compromised by the volume of saline. I had an empty TE and got the first fill at 3 weeks - 180 cc's. Painless. Not even any tightness. I couldn't see much change. The next week I got 240 cc's and finally saw a mound. Had minor discomfort and tightness that evening, fixed by Tylenol. After that I got 100 cc's or 80 cc's each week until we got up to 680 cc's, headed for 800 cc's. The TE side was huge already and I had a shelf on the top that was big enough to balance a cup on. The skin on the upper chest was quite achy so I used Lidocaine patches. The TE rubbed on my ribs when I sat down. Very annoying and uncomfortable.The next fill was only 60 cc's. That night I finally found out what others had complained about. I was in pretty good pain at 740 cc's. Ouch. Lasted two days. I called the PS and said no more. 740 just had to be good enough because I didn't want to go through that again. I feel so sorry for those of you who have to take strong meds after fills. Although I only had 2 days of what I would call pain rather than just discomfort, those 2 days were no fun. Would hate to have to deal with that for a month or six weeks.
My PS makes patients wait one month after the last fill for the exchange. Those of you who have to wait three or six months must be going crazy!
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ojoyjoy- Sure hope they can see you sooner. I always feel better when I have a plan. I never watched the needle during the fill process but I don't watch needles when they draw blood either. Haha! My TEs felt better once they got a bit bigger. I was 150cc at surgery and then did weekly fills of 60cc til I reached 450cc. The last fill was a bit tight for few days but now I only have the occasional twinge. The sides of my breasts are still really sensitive and sore. One side had the drains at that location and I am surprised at how sensitive it still is 2 months later. I am trying to massage it but it doesn't seem to be making much of a difference. Getting back strength and ROM is taking longer than I thought. My PT went on vacation for 2 weeks so I finally get to see her again on Wed. Yea! Hope your appointment on Thursday goes well and let us know how you are doing.
Ally
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ojoyjoy, I sure hope they can get you in sooner, plead your case with them. I remember my mastectomy was July 25, 2008 and my first chemo was August 25, 2008. Thinking of you, keep us posted.
Turtle/Jackie, I didn't realize you still had a drain in, no wonder you aren't cleared to walk more yet. Bet you can't wait to get that out!
My drain holes from my mastectomy always kind of bothered me, but boy the new sets of them, yikes, one set is very bothersome and big!
Can't wait to start some ROM exercises. Not sure when I will be cleared for that.
Hugs to all.
Kari
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kfinnigan- Did they put your "new" drains in the same entry points as before? I know the PS will use the same incisions for the implant but had not idea about the drains. I am so hoping that I don't have to have drains again. They were more of a nuisance than hurt except when they removed the last two...those two smarted. Yowza!!! Oh well, if I have them then I needed them...trying to remember that!
Ally
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bethq- yikes is right! My BS is a runner and I get she wants me moving but I was thinking in my head, okay Ms Marathon runner, that will not be happening. For me 1x a day is good right now and I will lengthen the time little by little.
Ally & Kfinnigan- I hope they can get me in sooner too! I did plead my case and was so upset the water works started while pleading. My BS nurse is really trying and said I should know by today or tomorrow. I go up tomorrow for my fill anyways so I'll follow up. I'm crossing my fingers I won't get car sick again. I'm feeling better and only on Advil for pain so hopefully I won't.
These TEs are quite uncomfortable. I hope as they get bigger they will be easier. At this point I'm a little concerned about starting back to work (hairstylist) as I use my arms and pec muscles all day long. I opened my book up in the beginning of sept. and I'm only doing 2-3 clients a day for the first couple of weeks. Hope I will be done with fills by then as I will be getting them weekly. I guess it will depend on how much I can handle at a time. My PS said his nurse will fill until I say "ouch" and then she'll stop. I do that every week till I like the size. We'll see how many cc's I can handle this first time.
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Ojoy- I'll give it to you straight....they do not get easier because the tension never goes away. Its like having over-inflated soccer balls in you chest! They don't hurt more, they just annoy the shit out of you. I never slept through the night with them. I had mine deflated for Rads and I am MUCH more comfortable.
Chin up, Foobs out!
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ojoy- jbokland is right...they just tend to be in the way and I don't sleep well with them. Chin up, Foobs out is a pretty good mantra. You just have to deal with them. Taking ibuprofen helps but you will be uncomfortable. I had 5 fills on a weekly basis with 60cc each time. I stopped at 450cc, not because it hurt (though I could tell it was quite a bit tighter). I stopped because my PS told me to stop when I liked the size. If you are getting PT, keep doing it and that will help with getting you back to your clients.
Hang in there! This too shall pass and better days are ahead!!
Ally
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Six weeks out of surgery and I think that I might have frozen shoulder. I woke up Saturday morning in terrible pain. It got better as the day went on but still not good. Sunday and Monday same thing. Then last night I could not get to sleep at all. There was no way for me to get comfortable. I tried heat, I tried ice, I tried percoset. I think I slept about 2 hours (on the couch because I didn't want to wake up my husband). I'm back to work, but fortunately I work from home and this week I have training webinars so I don't have to try to be at my best.
Does anyone know any good resources for advice as to what I should do?
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well crap...I went to 800 cc.
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Aw gila, so sorry to hear about your shoulder. What are the symptoms of frozen shoulder? I hope you find some relief soon, my friend.
I go back to work next week. I'm ready but I'm not ready, if that makes any sense. Lol!
One love,
tp4ever
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Gila sorry to hear about a possible frozen shoulder, if it ends up being a frozen shoulder I can totally relate as I have had two in the past--not anything to do with my breast cancer as they were 9, 10 years ago. I had a doctor send me to PT but that did not seem to help, another said only a surgery could help but thankfully I didn't fall for that nonsense, then finally an ortho doc who is very well respected here told me flat out that it just takes time-time-time for the shoulder to loosen up…. period. In my case and with both occasions it took just about 1 year to gradually get back to normal. The pain can be excruciating as you know, especially at night. Try not to overdue with your shoulder and just give it time to relax and loosen itself back to normal. Sending hugs that yours will loosen up sooner rather than later, not something you should have to deal with right now. xoxo
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jbokland & Ally - well, looks like I'm going to have to suck it up because I'm self employed and have to get back to work. I did tell my clients that In the begining I will be able to color/cut them but might not be able to style them and they'd have leave wet. They were all fine with that. Guess I'll have to get use to the sleepless nights. Last night I only woke up once and took some Advil. Thankfully, I was able to fall back asleep. But that was a first. I think taking a Valium right before bed helped with that.
gila- sorry to hear about your shoulder
I've read on different threads that some have their BS or PS refer for PT. I would look into that route and someone whose specializes in working with maceotcmy patients. I'm thinking about getting a referral. Anything to help me with ROM I will do because I can't afford for my arms not to work properly. -
I went to Lymphedema therapist as a preventative measure right after my Bmx. She gave me strengthening exercises to do with little 2 and 3 pound weights. She also have me some stretches to do in a doorway to improve my ROM Each fill would make my arm tighter and need to be reworked
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Ojoy, I think you might be making a mistake by following the nurses' advice to keep getting saline until it hurts you, then she'll stop. You could end up with way too much for your body to deal with so it will be quite painful. I didn't feel anything while getting the fills. It was five or six hours before I felt the full effects. Even the last one, which caused me to have a lot of pain for the next two days, didn't hurt a bit while I was getting it.
Checking the capillary refill response seems like a much better way to know when your body has had enough for that day.
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ojoy- My husband is self-employed so I understand that aspect. I would completely understand if my hairdresser could not style my hair so I think your cllients will understand that you are doing your best given the circumstances. Try and pace yourself when you go back if you can. Your job really demands a lot of your arms so take care. As for your fills, I would just fill 60cc (one syringe full at my doc's office) or less at a time. Like Sandra4611, I would not really feel the change until a few hours after the fill. If you figure out a way to get sleep, let us know because I think all of us are sleep-deprived. Hang in there!!
Ally
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To those of you having TE pain and discomfort ..you may want to try valium. It is a muscle relaxer and it really helped me at time. I used it on nights when I could really feel the pressure from the TE - especially the first couple nights after a fill and about 5 days after chemo. For some reason the chemo seemed to make my muscles tighten up a bit. I had the lowest dose possible and only took it at bedtime. I have used it sparingly. I got a prescription for 60 right after my surgery and still have about 15 left. So used about 45 in 4 months and most of that was in the beginning. My PS gave me the prescription.
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I found I could tolerate 50cc per fill with no issues. I did 100 once and I was QUITE uncomfortable for 2 days....would not do that again!
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Valium is wonderful. Unfortunately my PS only gave me enough for the first few weeks and thinks I should be ok with Tylenol. I saved two and a half just in case I am in agony after a fill.
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I've been hit with the blue funk. Woe is me....
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I'm sorry Pink! We had our surgeries the same date and I have been boo hooing for a week now
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