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new and future flat sister, with questions

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  • ldesim
    ldesim Member Posts: 1,193
    edited April 2013

    Hi Ariom, I am taking the pain meds to be on the safe side... I'll probably switch to Tylenol at some point tomorrow... and I'm already being cautious because I know me, and I'll overdo and I do not want to be taking steps backwards when I've come this far already.

    haha.. every thing about this process is all consuming.

    I am going to start my exercises tomorrow, I am so surprised at how much range of motion I have.

    Thankyou so much for the good wishes and the advice!

  • indenial
    indenial Member Posts: 125
    edited April 2013

    Idesim, I'm amazed at how well you are doing! I definitely had a lot more pain & trouble with range of motion even weeks later, so that is awesome you are doing so well already! I am 6 weeks post-op and finally feel mostly "normal" -- no pain except when I reach really high, nearly full range of motion. I hope you continue to do so well & heal quickly!

  • ldesim
    ldesim Member Posts: 1,193
    edited April 2013

    Hi indenial.. I know I am shocked too.. I really expected to be struggling for at least a week.  I credit the BS, not me, because I had great range immediately.  In fact I kept stopping myself from using that arm thinking I would cause damage to myself.

    I think there is a huge difference in recoveries from a single mastectomy to what you had.

    I am glad you are starting to feel normal, that must be such a relief.  The biggest thing for me is that I am able to do small things for myself.. that really means a lot lol.

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    Ariom, you are amazing!  So good to hear from you.

    Still no results.. not in much pain, though they took quite a bit out. Ariom, I am not doing my exercises!  I am being bad, I don't know why :)

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Hey there Bobogirl, I was wondering how you were doing.

    So glad you are through it, and on this side of the surgery. Feels good doesn't it! And not much pain, yayyyyy!!!!!

    Won't be long till you get your results, just try to relax and enjoy this time while you are healing. You've been through a lot.

    Well, Miss Bobo!, you know the answer to that question, don't you? LOL

    Just don't let yourself get tight, it will be harder to stretch it out if you leave it too long. Even if you just do them a couple of times a day, and work up from there. I know it's tedious, but they don't take long to do, and you'll love how you'll feel yourself getting stronger, and your ROM will be there.

    Take care of you!

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Hi there Bobo girl! I just had to delete that previous post because I got way ahead of myself thinking you'd had your "Big" surgery. I have just read the whole thread to find out what was happening with you. Now I have got it! Duh!

    You've had the excisional biopsy that your insurance dictates you have to have. So I get it now. 

    I am so glad to hear you are doing ok, and there wasn't much pain, yay!

    Try to relax and let yourself heal, it won't be long till you know exactly what is going to happen and when. We will all be here for you when that happens, and then we'll be pushing you, gently, to do your exercises. LOL

    I am wondering how much rest you are getting with a pair of 6 year olds, do you have any help at the moment?

    Anyway, take care of you, and let us know how you are doing.

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    No help at the moment! I am keeping my mother out of it this time.  She lives 2 hours away. Last time she came up for a week -- we were a plane ride away then -- and made life a living hell for me.  I will put a smiley face at the end of this sentence, but I am not kidding.  :)

    Yes, not really doing exercises because there will be another surgery.  Well, doing them once daily.  How are you doing?  Is it winter there?  I seem to remember it is.

    xxx

  • ldesim
    ldesim Member Posts: 1,193
    edited April 2013

    haha bobogirl, I sympathize about life being made a living hell!! I am very independent and I make a very difficult patient, but I just hate ppl doing things for me and my mother has absolutely no respect for my wishes and we end up butting heads to put it politely!

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    OMG,  idesim, you do not know the half of it.  Or... maybe you do :)

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Hi again Bobogirl!

    Take care of yourself, but consider getting some help for the next surgery. Not because it is awful, but because you'll be tired and you will need to watch how much you do.

    Idesim, did you do it alone, no help at all? and Indenial, it is great to hear how well you are doing too. It is definitely a different story for the ones who have the immediate recon.

    I was so very lucky, my Daughter came to stay and wouldn't let me do anything for the 10 days she was here. It was a bit OTT, I was really quite able to do most things, but I did take it easy because I needed to get back to the point where I could do all the stuff I have to do for my husband who is in a wheelchair, a C5/6 quad from a hang gliding accident. I was also very fortunate that his carers did a lot of chores for me too.

    We are in Autumn now Bobogirl, so it is starting to change. The mornings are crisp, and now that daylight saving is over, it gets dark fast, and early. This is our first year in our new home, so I am looking forward to seeing how the seasons change. We are on a huge lake, so the birdlife changing is amazing. The Pelicans are coming home now, I have my What Bird is That book out!  We even have Dolphins because the lake is tidal and mostly salt.

    You are all coming into Spring, so you'll be enjoying the warmth, and the outdoors. I am wondering how it will be in the Winter with the insulation gone from one side of my chest. I am already feeling the weird sensation of that non existent, right nipple puckering up when I shiver. LOL It is all a learning curve!

    Take care everyone!

  • ldesim
    ldesim Member Posts: 1,193
    edited April 2013

    omg Ariom, I experienced that today, I was cold and I would have sworn on anything that I still had a nipple!!  It is the oddest feeling!

    I have a hubby at home, which at times is help and at other times is a hindrance lol. I also have a visiting nurse, which I only agreed to because I was told she could remove the drains, which turns out not to be the case.  Seriously, I have been lucky enought to be able to resume almost all normal activity, but I have forced myself to take it easy. 

    Bilateral, however, would be more difficult and I agree, some help would be preferable.

    Ariom, your new home sounds lovely and Autumn is my favorite time of the year, although I am happy it is Spring here :)

  • ldesim
    ldesim Member Posts: 1,193
    edited April 2013

    Bobogirl, I probably do!!

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Hi Idesim, isn't it the strangest feeling? My Surgeon calls it "Phantom Sensation".  I also have a very weird one that happens when I am tired. Under my arm, where the SNB was done is really numb, but when I am tired, it feels like there is sharp claw holding my undrarm area.

    I know this one has been discussed before, but do you have the strange drinking sensation?

    It's probably a good idea to warn Bobogirl, so she is expecting it, if it happens to her. It isn't anything bad, but really wierd.

    When drinking, or eating, something really cold or hot, there is a sensation, that feels like the liquid is filling the chest area where the boob was. I asked my Surgeon about it, but he was left scratching his head, saying there isn't any way that it could be related to the surgery. Quite a few of the girls who had their surgery the same time as me had it too. I am convinced that it is to do with my insulation being gone. I don't feel it much now, except if I drink something cold and fizzy.

    Thanks Idesim, my whole life, I have wanted a house like this, and I love the colors of Autumn too. The light is different to any other season, and I am looking forward to seeing it here. I have always been a big city girl, so this is all very new to me.

    Talk about all these, "new beginnings!" LOL

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    Idesim, you may be a difficult patient -- it takes one to know one, so perhaps that says something :) Here's one way we are different, though -- my mother did NOT help!  I remember getting up to make cupcakes for my son's school -- I think it was two days after surgery -- and I was on so many drugs, and trying to measure things, and all because... well... my mother was not doing anything. I think I'll stop now -- wait.  One more.  Our friends all brought casseroles by -- and food for the children -- and... my mother ate it all herself!  She ate it when it arrived, and then she ate it later, during the evening, until it was gone!

    Moira, your home seems so beautiful to me -- you get beautiful seasons, and I love thinking about the birds.  You certainly deserve it, you are so kind.  Regarding insulation... I know it may seem not exactly right... but I have been gathering scarves.  I wonder if that will work for me?  Using them as shawls of sorts.

    Bought my daughter a swimsuit today on landsend to cheer myself up!  Bought us sort of matching swimsuits, actually.  :)

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    Moira!  I have the sharp claw!  I thought it was just me.  Had it with my first surgery.  And, in fact, I am having it at this moment!  Long day, and I did some driving.

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Oh WoW, Bobo, you are the first that I have come across to have that too!

    I had it last night, after a day working in the garden. hard to describe, especially to someone who doesn't know what this stuff feels like.

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    I am going to sound like such an ingenue... but... I thought I was the only one!   I always thought to myself that it felt like someone sewing in there with a needle and thread.  But sharp claw is actually more accurate!

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Oh Bobo, I am so sorry you had that experience with your Mom. I can't believe she ate your casserole! That's just wicked! Some people are just self obsessed,  I am afraid, nothing can be done with them. I have a MIL just like that, fortunately she is in care now, so I don't have to deal with her doing things like that to me any more.

    Thank you for the lovely words, I do appreciate it. This place is just magic, and I truly believe that the house found us

    I love it so much.

    I am an absolute scarf nut! I love them, and have always worn them, so, yes, I hope that they will help this winter. I sometimes duck out to the shops without a prosthesis, so I wear a scarf to distract the eye from the "D" on the left. It can look a bit like I am hiding a puppy, or OMG stolen produce, under my shirt, if I don't cover it! LOL 

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    Stealing an actual puppy sounds like an excellent idea to me just now.  Laughing about what you said about your MIL.  I think you may have hit the nail on the head regarding my own mother.  To be clear, in this analogy, my mother is the nail. :)

    She ate several casseroles!  And soup meant for me.  And she ate it all up!  Just like the big bad wolf.  Obviously I was not hungry, and my DLLP cooked for the children -- they were just two years old at the time.  But it didn't make me feel well, knowing that was going on.

    It's late here right now -- I'm just about to watch SNL in the front, everyone is asleep -- and I can't really sleep because I'm a little worried about my appt with the BS Wednesday.  And there is a hoot owl outside, even though we don't live in the country, really!  He sounds just like a cartoon hoot owl would sound.

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Oh WoW, Bobo, you are the first that I have come across to have that too!

    I had it last night, after a day working in the garden. hard to describe, especially to someone who doesn't know what this stuff feels like.

    I totally understand the late night wandering. I did it myself while I was waiting for results, and surgery.

    It is a very long night when you are up, and worrying on your own. So glad there was this place where you could reach out, and there was someone, sometimes half way round the world there ready to answer and support.

    Try not to overthink what will be, on Wednesday, worrying can't change anything, but it will stress you out and rob you of your sleep. You need to keep yourself well now, it will all be fine, soon you'll know exactly what is going on.

    I wonder why you have a Hoot Owl outside right now. I have an interesting book on signposts, I'll look it up!

    Take care, and let us know how it's going...OK?

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    Will do!  Why do owls hoot exactly?  I am going to get a book.

    It's funny.  Actually scared that this new BS will say on Wednesday, We decided it's nothing.  We're taking you off close watch.  That's what happened before, when I first moved here.  My BS in Pennsylvania went crazy.  The people down here redid the pathology and misdiagnosed.  Now my BS from PA wants me to come up to New Jersey for an MX.  Sorry if that sounds crazy and confusing.

    Not hoping for MX obviously, but should have had one in the first place, according to the BS who knows me best.  Very first cancer was ignored for seven months because I was so young.  So I fear a sort of different thing on Wednesday.

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    The Hoot is either territorial, communication, or all about sex!LOL

    I see now why you are worrying about this appointment. I guess there is nothing else you can do but go in and listen to what this one has to say, and go from there. If you aren't comfortable with what transpires, you just keep pushing till you get to where you are comfortable.

    You are a strong one, you are intelligent, and you know what you need to do. It is tough, but with what you've been through already, I am sure you'll get there.

    Just take it one step at a time, is it easy for you to get to NJ if you do decide to go that way? Do you have someone to go to the appointment with you?

    Please let us know what happens. I'll be thinking of you!

  • gramwe
    gramwe Member Posts: 238
    edited April 2013

    I feel as if I've been eavesdropping on your conversation, and now I have to speak. I'm not crazy as loon!!! Everytime I drink something cold it feels like its leaking into the spots that use to contain breasts. Then there are the attacks from the claw, even tho I am not yet "allowed" to use my right arm while waiting on a skin graft to take after my second surgery 12 days ago, if I wash dishes, wipe down counters, etc, I get the claw sensation too. I had no idea it was another part of this journey.



    Have to admit I'm a bit envious of those who could drive after a week. It's been 4 weeks since I've done any driving, unless you count driving my DH crazy. With the arrival of spring here there are flowers begging to be planted, a veggie garden that should have been planted, weeds that need pulling, grass to mow, and all I can do is dream of the day I can do it myself!



    Arimo, your home sounds lovely. Autumn and spring are my favorite seasons, watching the changes in nature.



    Bobogirl, sending positive thoughts for your appointment Wednesday. Waiting is the hardest.



    Thanks for letting me but in.



    Wanda

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Hello Wanda, Welcome!

    Thank you for coming into this conversation, no such thing as  easvesdropping here!

    I am so glad to hear of others who have these weird sensations, it makes it feel "normal" doesn't it?

    I was almost driven mad by the black stone countertops I had put in. The "claw" was doing its dreadful best, every time I tried to polish that stone. What was I thinking when I chose that?LOL It isn't an issue now.

    I too, was just desperate to get into my garden. I had so much to do, but I was told I had to keep out of the dirt till I was healed. I did get a small bit of infection in my incision, so I did steer clear of the garden for some weeks. It all waited for me till I was able.

    So sorry to hear about your second surgery, and your skin graft, but when it is done, it's done, and thankfully, we are all on the other side of this surgery business! Yay!

    I didn't drive for weeks either. I was told I couldn't drive till I could take a "Hit" to the chest. I didn't like the sound of that so I avoided it.

    We all have  our own healing time, but we are finding out that a lot of us have the same strange, weird sensations that no on else can relate to, but us. It is sort of comforting to know these sensations aren't uncommon among our sisterhood, isn't it?

    Today is grey, with much needed heavy rain, and a chill in the air. A sign of what is to come. I am wondering what weird sensations are going to manifest once we get into the really cold weather here. I'll let you know!

    Keep us posted Wanda, on how you are doing.

    Bobo, you take care too!

    And Idesim, what are you up to?

  • ldesim
    ldesim Member Posts: 1,193
    edited April 2013

    Why you all have been chatting like a bunch of magpies lol. I'll have to catch up.  Hi Wanda, welcome!

    I have had the claw!! I think I over did it.  I haven't had the drinking thing yet, that just sounds like a barrel of laughs.   Today I have been experiencing strange sensations that I am thinking might be the nerves.

    Bobogirl, amazing about your mother.. and yes, polar opposite of mine who hovers and controls and always knows what is best, even when she doesn't and can be very verbally abusive.  Hmm.. not sure which I'd prefer to be honest lol.

    Good news for me tho, I get my drains out tomorrow.  Bad news is its Marathon Monday and I have to go into downtown Boston to have it done and it will be a mobshow.  As I told my BS today when she brought up how best to get in tomorrow, I will run in the marathon in order to get these damns things out lol.

    I am so uncoordinated, I could never deal with scarves, but that is a great idea for a concealer, or for stealing puppies and produce lol. I was cracking up over that one.

    What we do to ourselves worrying.. we know there is nothing we can do about anything now, yet we still worry.. you'd think we'd have learned by now... but damn wednesday is so long off and poor Bobogirl is not going to get much sleep :(

    I would be happy just to have a day of sunshine, it has been overcast with just spots of sun since wednesday.

    Have a good evening.. I'll check in once of am free from the damn drains!!

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    Hi Idesim, glad you've caught up. Another one with the "claw"!

    I quizzed my Surgeon about the neves, he said that the two cut ends will try to find each other. I have had much zappy electric, buzzy things going on. Not pain, just sensation.

    Isn't that the truth, we worry ourselves mad. I don't think I will ever understand, as old as I may get, why we always go to the dark side. I am generally a really upbeat positive person, but the waiting for answers for this thing, took me to places I never want to go to again.

    All the very best for getting rid of those drains Idesim. I'd have run a marathon just to see them gone too. They are the pits! You'll feel so much better without them.

    All the best to everyone else, take care!

  • gramwe
    gramwe Member Posts: 238
    edited April 2013

    Idesim, hooray for you, getting rid of those drains is a happy day, even if you have to run a marathon! My DH, bless his heart, pinned pairs of my socks into my shirt to tuck the drains in so they wouldn't wag like tails when I walked, you might want to try that for marathon running. I think I would have camped outside the doctors office all night in the cold, rather than miss an appointment to have them removed. Hopefully tomorrow I will be rid of "plastic wrap" , I know there is a medical name for it but I can't remember it, its covering me from throat to stomach. It itches, there are blisters where its irritated my skin, and I perspire underneath. Thank goodness they removed it from my thigh last week.

    Ariom, it is nice to know that our odd sensations are common to us. The temperature dropped here today before the rain came in, when the cool breeze blew I covered my chest to conceal nipples that are no longer there, it felt as if they were there. Then there's those sudden stabbing pains, that happen when nerves reconnect. I haven't tried any scarf fashion yet, but it is going to happen it seems that every top I own is either v-neck or low cut, something I had never noticed until now!

    Time for ativan, and sleep. By the way, if my BS tells me he didn't get clean margins again tomorrow I may just punch him in the nose....I'll try to post from jail if I need money for bail : ) Goodnight or good morning!

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2013

    I can't believe how many low cut tops I had too! All gone now, too much trouble.

    I have been lucky, I had my op in December which is HOT here. I found a brand that makes sleeveless tanks with a higher neckline. I lived in those over the summer. When it was searing hot, I experimented with sarongs that I twisted the two ends and tied around my neck, halter style. I pinned a little concave pad from an Ahh Bra inside, which stopped the fabric brushing my skin. It worked a treat!

    I wish you all the best for your appointment tomorrow. I hope we don't have to bail you out!

    Try to get a rest today, I am sure it will be good news. Let us know.

  • bobogirl
    bobogirl Member Posts: 2,083
    edited April 2013

    Dear Wanda:

    I kind of hope we do have to bail you out!  :)  Welcome.  So good to have a bad girl join us :)

    Please forgive our magpie chatter.  I was up late and we just happened to be on at the same time. Sort of thrilling!  Please don't think I stay up overnight, roaming the halls, worried sick about myself.  It's true I can't sleep sometimes, or wake early.  The suspense is killing me.  The surgery I'm not as afraid of.

    Hooray idesim!  You are having your drains out!  I hope you will provide details.  What is that thing with the plastic wrap, Wanda?  I don't like the sound of that at all.

    You know what's funny?  I do this thing with my daughter... I make my hand into a claw shape, and hold it suddenly in front of her, and I say: It's THE CLAW!  And then I put that claw into her belly and she screams with laughter.  She's seven but she will still occasionally ask, Where is that claw?

    So when we talk about the other claw, I think about that too.  xxx

  • gramwe
    gramwe Member Posts: 238
    edited April 2013

    Idesim. Please give us a wave and reassure us you are home safely. Just saw the news reports of the explosions near the finish of the marathon route and immediately thought of you. I pray that you are safe as well as friends of family.



    Bobogirl I didn't have to punch the BS in the nose, clean margins! Don't give up on me going to jail tho I ran out of Ativan this morning one never knows what may come out of my mouth when left to my own emotions, never was that way before BC. The plastic wrap is to hold my skin graft in place and to provide protection, and aggregation for me.



    I'll return shortly, still trying to watch coverage of the marathon.

    Wanda