Any and all advice appreciated...double mastectomy in a week and a half

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Viranani
Viranani Member Posts: 9
Hi, everyone...
Exploring new territory; this is my first post. I'll be having a double mastectomy without reconstruction on the 13th of June.

I would love to hear your stories/advice about what has been most helpful, especially about recovering from the surgery...how long the drains were in, pain levels, how soon before you could start gently stretching...whatever. This is my first surgery, and I have no idea what to expect.

Also a more minor thing... I'm very lucky; I'm a Buddhist nun, so have no need to consider a reconstruction-but don't want flaps or dog-ears', either. Is this something I should talk to my surgeon about? I have a lot of other questions, and a short appointment with a busy doc; so I'm prioritizing my list of things to ask...
Viranani

Comments

  • carolu200
    carolu200 Member Posts: 7
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    Viranani, I had a bilateral
    Viranani, I had a bilateral mastectomy without reconstruction last September. From where I'm sitting now it doesn't seem so bad but back then I know I was in some pain. Not as bad as I thought it might be but bad enough. But thanks to Percoset I made it through. And I learned quickly not to make any sudden moves. The worst thing for me was having to sleep on my back. I'm a side sleeper and it was very difficult for me. I would wake up with a horrible pain in my upper back because I was unable to move around in bed. That, too, passed. I started some very gentle stretches within a week of surgery and continue to do them even now. I also massaged my scars with Vitamin E oil twice a day. The single most helpful thing I did was ASTYM physical therapy. (www.astym.com) I heard a presentation on this therapy and my doctor wrote a script for me. I'd tried traditional physical therapy for range of motion but it really didn't do much. Astym is a non-invasive therapy that helps the scar tissue resorb and it's used in conjuction with kinesio tape. The difference was amazing! My range of motion is about 95-98% and I'm shooting for 100%. The scars are soft and supple and my surgeon was very impressed with the results.

    Good luck with your surgery and prayers for a quick recovery.

    Carol
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    Hope this helps
    If this is your first surgery, be aware that pain meds are prescribed not just to make you more comfortable, but because patients who take them heal faster. This is because pain meds allow you to move more which will help you heal faster. Take your meds as recommended, wait about 20 minutes and then try and walk/move as tolerated.

    Pain meds will cause constipation and may cause nausea (especially on an empty stomach). Your doctor can prescribe something if either occurs. If you are prone to nausea (I am), ask him/her to have something for nausea ordered, just in case.

    Ask your doc about exercises and also whether it is ok for you to contact Reach to Recovery. Mine let a Reach to Recovery volunteer come and visit me and she gave me a little box with some tools: a ball to squeeze, a rope for hanging over the door to do gentle stretches, etc. She also taught me how to do many gentle exercises.

    Reach to Recovery

    Hope this helps and good luck! You are in my prayers and please let us know how you do.
  • butterflylvr
    butterflylvr Member Posts: 944
    Options

    Hope this helps
    If this is your first surgery, be aware that pain meds are prescribed not just to make you more comfortable, but because patients who take them heal faster. This is because pain meds allow you to move more which will help you heal faster. Take your meds as recommended, wait about 20 minutes and then try and walk/move as tolerated.

    Pain meds will cause constipation and may cause nausea (especially on an empty stomach). Your doctor can prescribe something if either occurs. If you are prone to nausea (I am), ask him/her to have something for nausea ordered, just in case.

    Ask your doc about exercises and also whether it is ok for you to contact Reach to Recovery. Mine let a Reach to Recovery volunteer come and visit me and she gave me a little box with some tools: a ball to squeeze, a rope for hanging over the door to do gentle stretches, etc. She also taught me how to do many gentle exercises.

    Reach to Recovery

    Hope this helps and good luck! You are in my prayers and please let us know how you do.

    Hi Viranani
    I too had a bi-lateral mastectomy the end of February. I must have been a lucky one because I experienced no pain, I didn't even hit the morphine drip once while in the hospital. I have since heard horror stories but I can't personally relate to them. So with that said every one is different. I must have a high pain tolerance.. as far as the drains go, that was my worse struggle. I had mine if for 3 weeks and it was a blessing to finally get them out. If you have problems post something and we will fill you in on the tricks of the trade but until then we won't bore you with unneeded facts.

    In the first two weeks you will have limitations, you won't be able to lift your arms any higher then shoulder height and lift nothing heavier then a gallon of milk. I personally knew I could do more, but I was so worried about popping a stitch as everything seemed so tight. About three weeks after surgery I was given the Okay to start arm exercises. You will find out that if you have lymph nodes removed you will have more limitations. I had just sentinel nodes removed and it felt like a puckering under my armpit. My chest area along with my torso from my armpit down on both the front and backside of my arm was numb. This numbness won't go away for some time. I am three months post surgery and some feeling is finally starting to return. It takes time...

    I must tell you I am also going through reconstruction and I had tissue expanders put into place during my mastectomy. So some of my feelings might be slightly altered from what you will feel.

    My prayers will be with you, keep us posted on how you are doing.

    Hugs,
    Lorrie
  • csr771
    csr771 Member Posts: 117
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    Welcome
    I just wanted to welcome you to the boards. There is a wonderfully supportive group here. Of course, I am sorry that you had to find this site. I did not have a bilateral mastectomy. I had a skin sparring mastectomy of the left breast with immediate reconstruction. I came home with four drains--two in the breast and two in the abdomen. I was given physical therapy exercises in the hospital and a sheet with exercises to do when I got home. The exercises were progressive in that I had to do more of them each week. I would start doing some research on exercises to improve your range of motion.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    Hello Viranani,
    My bilateral

    Hello Viranani,

    My bilateral was Jan 14th, I also had 14 lymph nodes removed on the left side. No reconstruction for me for at least a year.

    I would say yes, definitely talk with your surgeon and let them know you don't want flaps or dog ears, and why. It's good that you are considerate of you doctors time, but they work for you. You should get ALL your questions answered. I would strongly recommend you talk with your doc about lymphedema, you will be at risk once you have the surgery and especially if they're removing lymph nodes too.

    For me, I was in recovery longer than usual. My breathing was too shallow so I was on oxygen longer than normal, and had a breathing monitor once they moved me to a regular room (it kept me awake). But the most memorable part was the first trip to the toilet. I was still feeling a little shaky in the legs, so I used the bar on the wall(left side) for support as I bent to a sitting position. Let's just say I shouldn't have done that, the pain down the back of my left arm was horrible. I ended up staying in the hospital for two nights (one night was planned) because we couldn't get that left arm pain under control.

    When I got home I slept in a semi-upright position for a week or so. I used a wedge pillow with a couple of regular bed pillows. Then I also had some quite small pillows to support my arms in comfortable positions. It was probably two months, maybe more, before I was able to sleep on my side.

    I had 3 drains, and they were uncomfortable and tedious. The last one was removed at 3 weeks. I wanted/needed help with the drains for about two weeks, then my arms were mobile enough that I could manage the care of that last drain myself. Your doc should give you specific instructions about the care of your drains. It helped me to see one before the surgery.

    There were two exercises I found really helpful that were recommended by my doc. One is to slowly climb your fingers (like a spider) up a wall or door, and then climb them back down. You should be standing close to the door/wall and climb high enough that you feel a stretch, but you shouldn't be feeling pain. The other was to sit upright in a chair without arms, then rotate your arm in a small circle, forward then backward. The elbow should be straight, but not stiff. It's the shoulder you want gently moving. Check with your doc about when to start exercising. I started about a week after surgery, and these should be done several times throughout the day rather than several repetitions once per day.

    I hope this helps. Please come back with any other questions you might have. And you have my support and positive energy for the 13th.

    Hugs,

    Linda
  • jendrey
    jendrey Member Posts: 377
    Options

    Hello Viranani,
    My bilateral

    Hello Viranani,

    My bilateral was Jan 14th, I also had 14 lymph nodes removed on the left side. No reconstruction for me for at least a year.

    I would say yes, definitely talk with your surgeon and let them know you don't want flaps or dog ears, and why. It's good that you are considerate of you doctors time, but they work for you. You should get ALL your questions answered. I would strongly recommend you talk with your doc about lymphedema, you will be at risk once you have the surgery and especially if they're removing lymph nodes too.

    For me, I was in recovery longer than usual. My breathing was too shallow so I was on oxygen longer than normal, and had a breathing monitor once they moved me to a regular room (it kept me awake). But the most memorable part was the first trip to the toilet. I was still feeling a little shaky in the legs, so I used the bar on the wall(left side) for support as I bent to a sitting position. Let's just say I shouldn't have done that, the pain down the back of my left arm was horrible. I ended up staying in the hospital for two nights (one night was planned) because we couldn't get that left arm pain under control.

    When I got home I slept in a semi-upright position for a week or so. I used a wedge pillow with a couple of regular bed pillows. Then I also had some quite small pillows to support my arms in comfortable positions. It was probably two months, maybe more, before I was able to sleep on my side.

    I had 3 drains, and they were uncomfortable and tedious. The last one was removed at 3 weeks. I wanted/needed help with the drains for about two weeks, then my arms were mobile enough that I could manage the care of that last drain myself. Your doc should give you specific instructions about the care of your drains. It helped me to see one before the surgery.

    There were two exercises I found really helpful that were recommended by my doc. One is to slowly climb your fingers (like a spider) up a wall or door, and then climb them back down. You should be standing close to the door/wall and climb high enough that you feel a stretch, but you shouldn't be feeling pain. The other was to sit upright in a chair without arms, then rotate your arm in a small circle, forward then backward. The elbow should be straight, but not stiff. It's the shoulder you want gently moving. Check with your doc about when to start exercising. I started about a week after surgery, and these should be done several times throughout the day rather than several repetitions once per day.

    I hope this helps. Please come back with any other questions you might have. And you have my support and positive energy for the 13th.

    Hugs,

    Linda

    ...
    Hi Viranani

    Sorry you have cause to be here, but glad you found us! Welcome!!!

    I had a lumpectomy and then a mastectomy with delayed/immediate reconstruction. I was/am very fortunate as I didn't experience any pain at all. Although the drains were cumbersome, they too didn't cause any pain. I had a long lasting infection and my drains were in place a lot longer than 3 weeks. Cannot remember for how much longer but I had seen the doctor twice after the 3 weeks; she's only in on Wednesdays and Fridays so maybe it was 4½ or 5 weeks altogether. She removed the drains even though the fluid levels weren't as low as she'd liked them to be as she was concerned about the drain site becoming infected as well.

    The mastectomy wound site wasn't infected. During the mastectomy the surgeon inadvertantly got to close to the surface when wielding the cauterizing tool. This resulted in a hole being burned from the inside out to the surface of my skin. It sounds far worse than it is..well, kinda' - I eventually had to have two Frankenstein looking stitches put in to help close up that wound. And that scar isn't too nice looking or feeling (by touching it) either for that matter.

    But still none of this caused me any pain at all.

    When I was given the go ahead to shower I found a new dilemma presented itself.
    What or how to maneuver the drain? What worked for me was I went through my closet and found a really long tie from a blouse. I tied one end in a knot then used a couple of safety pins to secure the drain onto the fabric just above hip level.
    Note: Ahem, make sure the tie/fabric is colorfast for peace of mind. The first
    sash/tie I tried happened to be red and white from a blouse I hadn't actually wore yet. My bad. It seemed all at once I noticed the water was running red which my immediate thought was of blood. Not so, it due to the dye/tie not being colorfast!!!

    Viranani, you don't have a need to consider reconstruction BECAUSE you're a Buddhist nun? Or because it's your personal choice? If it's because of the former, let me just say even Buddhist nuns need to consider having breast reconstruction. Breast reconstruction is far more than just for simple cosmetic purposes. Albeit this IS the first and foremost thought that comes to mind when one thinks of breast surgery.

    But it's also for a more complete self body image. If you feel less than complete it really complicates how you view yourself and even trickier how you feel others may view you. Your perceived self image is changed and it will have some effect on you. Just because your a Buddhist nun doesn't mean you should be primarily dismissed from a consideration of breast reconstruction. You most certainly are entitled to feel what every woman fears at the prospect of losing something that's been with you, a part of you, your whole life. Further, you're entitled to breast reconstruction if you so desire. Perhaps not for the usual reasons but because if you're more complete with and for yourself then you can be 'all there' for yourself as well as for those around you. If that makes any sense. =)

    On the other hand if it's your personal choice and you are at peace with your decision then fully explore with your surgeon (plastic surgeon?) what your options are, EXACTLY. Has your surgeon done many mastectomy surgeries? Can you see some before and after pictures? I'm not to sure that general surgeons would have pics but a plastic surgeon would likely have many pics to show you. Be sure to ask how you expect to look afterwards.

    It's refreshing you're aware your dr is very busy and time is limited. However, your dr WORKS for you and even though it may seem like they are in charge, he/she/they are not in charge. You are in charge, and the bottom line is they do what you tell them or rather they do what you've agreed to allow them to do. Don't be afraid to question them about anything. Trust me they've probably heard it all before or will hear it again if not yet.

    If you don't ask, you may not ever know...remember the only dumb questin is the unasked one!

    I'm just sayin'
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    Options
    jendrey said:

    ...
    Hi Viranani

    Sorry you have cause to be here, but glad you found us! Welcome!!!

    I had a lumpectomy and then a mastectomy with delayed/immediate reconstruction. I was/am very fortunate as I didn't experience any pain at all. Although the drains were cumbersome, they too didn't cause any pain. I had a long lasting infection and my drains were in place a lot longer than 3 weeks. Cannot remember for how much longer but I had seen the doctor twice after the 3 weeks; she's only in on Wednesdays and Fridays so maybe it was 4½ or 5 weeks altogether. She removed the drains even though the fluid levels weren't as low as she'd liked them to be as she was concerned about the drain site becoming infected as well.

    The mastectomy wound site wasn't infected. During the mastectomy the surgeon inadvertantly got to close to the surface when wielding the cauterizing tool. This resulted in a hole being burned from the inside out to the surface of my skin. It sounds far worse than it is..well, kinda' - I eventually had to have two Frankenstein looking stitches put in to help close up that wound. And that scar isn't too nice looking or feeling (by touching it) either for that matter.

    But still none of this caused me any pain at all.

    When I was given the go ahead to shower I found a new dilemma presented itself.
    What or how to maneuver the drain? What worked for me was I went through my closet and found a really long tie from a blouse. I tied one end in a knot then used a couple of safety pins to secure the drain onto the fabric just above hip level.
    Note: Ahem, make sure the tie/fabric is colorfast for peace of mind. The first
    sash/tie I tried happened to be red and white from a blouse I hadn't actually wore yet. My bad. It seemed all at once I noticed the water was running red which my immediate thought was of blood. Not so, it due to the dye/tie not being colorfast!!!

    Viranani, you don't have a need to consider reconstruction BECAUSE you're a Buddhist nun? Or because it's your personal choice? If it's because of the former, let me just say even Buddhist nuns need to consider having breast reconstruction. Breast reconstruction is far more than just for simple cosmetic purposes. Albeit this IS the first and foremost thought that comes to mind when one thinks of breast surgery.

    But it's also for a more complete self body image. If you feel less than complete it really complicates how you view yourself and even trickier how you feel others may view you. Your perceived self image is changed and it will have some effect on you. Just because your a Buddhist nun doesn't mean you should be primarily dismissed from a consideration of breast reconstruction. You most certainly are entitled to feel what every woman fears at the prospect of losing something that's been with you, a part of you, your whole life. Further, you're entitled to breast reconstruction if you so desire. Perhaps not for the usual reasons but because if you're more complete with and for yourself then you can be 'all there' for yourself as well as for those around you. If that makes any sense. =)

    On the other hand if it's your personal choice and you are at peace with your decision then fully explore with your surgeon (plastic surgeon?) what your options are, EXACTLY. Has your surgeon done many mastectomy surgeries? Can you see some before and after pictures? I'm not to sure that general surgeons would have pics but a plastic surgeon would likely have many pics to show you. Be sure to ask how you expect to look afterwards.

    It's refreshing you're aware your dr is very busy and time is limited. However, your dr WORKS for you and even though it may seem like they are in charge, he/she/they are not in charge. You are in charge, and the bottom line is they do what you tell them or rather they do what you've agreed to allow them to do. Don't be afraid to question them about anything. Trust me they've probably heard it all before or will hear it again if not yet.

    If you don't ask, you may not ever know...remember the only dumb questin is the unasked one!

    I'm just sayin'

    One other reason to consider
    One other reason to consider reconstruction...I had a lot of skin removed with my first mastectomy (because my tumor was large) and my surgeon then had to pull the remaining skin very tightly to close the incision (as in stretch marks tight). This resulted in my shoulder being rotated down and in--not a comfortable situation and it limited my range of motion.

    After reconstruction (I had a Tram flap), my shoulder opened back up--aahhhh, relief!

    Everyone's situation is so different, but, since we were on the subject, I thought I would mention it.
  • sweetvickid
    sweetvickid Member Posts: 459 Member
    Options
    Yes talk to your surgeon.
    Yes talk to your surgeon. My Mom didn't when she had a single mastectomy and she has that roll of extra skin which she hates.. When I had my double I told my surgeon to take off the excess skin that I wanted my chest to be smooth. I have a nice smooth boy chest now.

    Get one of those pillows that is a big triangle. Can't remember what they are called. They make it is so much easier for you to get up after laying down. The also helped me sleep on my back while had my drains in. If you can't remember to roll when you get up. It will hurt if you try and just raise up the normal way from laying down.

    I really didn't have any pai. I did have this sensation on the cancer side like I had a big chunk of wood shoved in my chest at times.

    I did not know there was Buddhist nuns!
  • sweetvickid
    sweetvickid Member Posts: 459 Member
    Options
    Read up on the signs of lymphedemia and if you think you might have it make them send you to a lumph therapist.

    Here are some good exercises for your arm
    For the 1st 7 days after surgery i had to do the following exercises.sorry but it may be hard to explain in words!
    1) circle shoulders 5x forward and 5x backward
    2)place fingertips on shoulders of same side and slowly raise elbows upward until they are in line with the height of your shoulders.repeat 5x (you may not get very high to start with)
    3)sit on the edge of a chair,clasp ahnds with arms out locked in front of you and slowly lift to shoulder height.repeat 5x
    4)raise each arm individually as if combing your hair from front to back.repeat 5 times each side(i found this one painful to start with)
    5)reach around and walk your fingers up your back.repeat 5x each side.
    ----------------------------------------------------------------------------------------
    From day 7 i then had to add more exercises in AS WELL as doing the first five.
    6)stand about 1 foot away from the wall but face it.put both hands on the wall in front of you and slowly walk your fingers up the wall.Mark where you get to so you can copare daily.repeat 5x
    7)stand so the wall is to your side.place fingers on the wall and slowly walk your fingers up the wall as in (6).repeat 5x each side.
    8) lay on the bed with kness drawn up and feet flat.Put your hands behind your head and VERY gently let your arms drop as far as they will go.Repeat 5 times,(this also hurt alot but it does get easier!)
    9) hold a towel diagonally behind your back and see-saw it up and down in a drying action.
    -----------------------------------------------------------------------------------------
    After 2 weeks phsioi was allowed to add the final 3 exercises
    10)lay on your back with enough head room to lift both arms upward and over your head as far as you can.Do 1 arm at a time and assist with the other arm.go as far as you can and hold for 5 seconds.repeat 5x each side.
    11)lay on the floor with 1 armout to the side,palm facing up.slide the arm away from you and upward as far as you can hold for 5.repeat other side.
    12)stand in a doorway with your elbow and forearm against the frame.face straight forward.feel a firm but comfortable stretch.Then with the opposite leg,step fwd and lunge slightly,feeling the stretch on the chest and underarm.hold for 5 and repeat 5x each side.
    13)reach over your headand try and reach down to your shoulder blades.Aim to point your elbow to the ceiling.use the other hand to push a little further.Hold for 5.repeat 5 x
    -----------------------------------------------------------------------------------------
    Now there is an arm-swinging exercise recommended for those that had node removal which should be done BEFORE numbers 11,12 and 13.
    Place the unaffected arm on the back of a chair and lean fwd resting your forehead on your arm. Allow your other arm to hand loosely and swing the shoulder fwd,backward,side to side and then in a circular motion.**** the arm relaxes,increase the length of the swings and size of the circles.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    Options

    Hi Viranani
    I too had a bi-lateral mastectomy the end of February. I must have been a lucky one because I experienced no pain, I didn't even hit the morphine drip once while in the hospital. I have since heard horror stories but I can't personally relate to them. So with that said every one is different. I must have a high pain tolerance.. as far as the drains go, that was my worse struggle. I had mine if for 3 weeks and it was a blessing to finally get them out. If you have problems post something and we will fill you in on the tricks of the trade but until then we won't bore you with unneeded facts.

    In the first two weeks you will have limitations, you won't be able to lift your arms any higher then shoulder height and lift nothing heavier then a gallon of milk. I personally knew I could do more, but I was so worried about popping a stitch as everything seemed so tight. About three weeks after surgery I was given the Okay to start arm exercises. You will find out that if you have lymph nodes removed you will have more limitations. I had just sentinel nodes removed and it felt like a puckering under my armpit. My chest area along with my torso from my armpit down on both the front and backside of my arm was numb. This numbness won't go away for some time. I am three months post surgery and some feeling is finally starting to return. It takes time...

    I must tell you I am also going through reconstruction and I had tissue expanders put into place during my mastectomy. So some of my feelings might be slightly altered from what you will feel.

    My prayers will be with you, keep us posted on how you are doing.

    Hugs,
    Lorrie

    I had a lumpectomy, but,
    I had a lumpectomy, but, wanted to wish you good luck with your surgery.


    Hugs, Debby
  • Viranani
    Viranani Member Posts: 9
    Options

    Read up on the signs of lymphedemia and if you think you might have it make them send you to a lumph therapist.

    Here are some good exercises for your arm
    For the 1st 7 days after surgery i had to do the following exercises.sorry but it may be hard to explain in words!
    1) circle shoulders 5x forward and 5x backward
    2)place fingertips on shoulders of same side and slowly raise elbows upward until they are in line with the height of your shoulders.repeat 5x (you may not get very high to start with)
    3)sit on the edge of a chair,clasp ahnds with arms out locked in front of you and slowly lift to shoulder height.repeat 5x
    4)raise each arm individually as if combing your hair from front to back.repeat 5 times each side(i found this one painful to start with)
    5)reach around and walk your fingers up your back.repeat 5x each side.
    ----------------------------------------------------------------------------------------
    From day 7 i then had to add more exercises in AS WELL as doing the first five.
    6)stand about 1 foot away from the wall but face it.put both hands on the wall in front of you and slowly walk your fingers up the wall.Mark where you get to so you can copare daily.repeat 5x
    7)stand so the wall is to your side.place fingers on the wall and slowly walk your fingers up the wall as in (6).repeat 5x each side.
    8) lay on the bed with kness drawn up and feet flat.Put your hands behind your head and VERY gently let your arms drop as far as they will go.Repeat 5 times,(this also hurt alot but it does get easier!)
    9) hold a towel diagonally behind your back and see-saw it up and down in a drying action.
    -----------------------------------------------------------------------------------------
    After 2 weeks phsioi was allowed to add the final 3 exercises
    10)lay on your back with enough head room to lift both arms upward and over your head as far as you can.Do 1 arm at a time and assist with the other arm.go as far as you can and hold for 5 seconds.repeat 5x each side.
    11)lay on the floor with 1 armout to the side,palm facing up.slide the arm away from you and upward as far as you can hold for 5.repeat other side.
    12)stand in a doorway with your elbow and forearm against the frame.face straight forward.feel a firm but comfortable stretch.Then with the opposite leg,step fwd and lunge slightly,feeling the stretch on the chest and underarm.hold for 5 and repeat 5x each side.
    13)reach over your headand try and reach down to your shoulder blades.Aim to point your elbow to the ceiling.use the other hand to push a little further.Hold for 5.repeat 5 x
    -----------------------------------------------------------------------------------------
    Now there is an arm-swinging exercise recommended for those that had node removal which should be done BEFORE numbers 11,12 and 13.
    Place the unaffected arm on the back of a chair and lean fwd resting your forehead on your arm. Allow your other arm to hand loosely and swing the shoulder fwd,backward,side to side and then in a circular motion.**** the arm relaxes,increase the length of the swings and size of the circles.

    You are all fantastic!
    Oh, my...each of you is a total gem! Thanks, everyone, for the gold mine of information and advice-to say nothing of the good wishes and inspiration of your stories. Before my dx I had no idea how many people were walking around dealing with this. So, yes...I'm sorry to have to be here too, but it cracks the heart wide open, too. Not a bad thing, at all. I'm wishing the best for all of you on this long strange journey we share!

    So I found a wedge to sleep on...and will make sure I have everything ready and in reach(thanks, that's something I would never have thought of). In a warped way it feels like preparing to bring a baby home.

    And I have a ton of exercises to do,and lots to learn. Looked online about the physiotherapy that works so well, but alas, there's none locally.

    And for those sisters out there who told me to TALK TO YOUR DOCTOR!...you have my gratitude for the reminder about who's working for whom, because he sure won't be cheap!

    As for the not having reconstruction decision...it's both precepts(adornment and beautification are prohibited), and choice. Were I married (or unmarried and in the dating scene), or in a career where one's appearance is vital to success, the choice would probably be different. But as it is, it's not such a hard decision, and one I feel comfortable with. To tell the truth, I'm actually looking forward to throwing my bras away and never needing them again!

    [And yes, there are plenty of us Buddhist nuns out here, many kinds, but mostly in Asia. I ordained in Burma and spend a lot of my year there...though now my return will be just a wee bit delayed!!]
    Viranani
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Options

    Hello Viranani,
    My bilateral

    Hello Viranani,

    My bilateral was Jan 14th, I also had 14 lymph nodes removed on the left side. No reconstruction for me for at least a year.

    I would say yes, definitely talk with your surgeon and let them know you don't want flaps or dog ears, and why. It's good that you are considerate of you doctors time, but they work for you. You should get ALL your questions answered. I would strongly recommend you talk with your doc about lymphedema, you will be at risk once you have the surgery and especially if they're removing lymph nodes too.

    For me, I was in recovery longer than usual. My breathing was too shallow so I was on oxygen longer than normal, and had a breathing monitor once they moved me to a regular room (it kept me awake). But the most memorable part was the first trip to the toilet. I was still feeling a little shaky in the legs, so I used the bar on the wall(left side) for support as I bent to a sitting position. Let's just say I shouldn't have done that, the pain down the back of my left arm was horrible. I ended up staying in the hospital for two nights (one night was planned) because we couldn't get that left arm pain under control.

    When I got home I slept in a semi-upright position for a week or so. I used a wedge pillow with a couple of regular bed pillows. Then I also had some quite small pillows to support my arms in comfortable positions. It was probably two months, maybe more, before I was able to sleep on my side.

    I had 3 drains, and they were uncomfortable and tedious. The last one was removed at 3 weeks. I wanted/needed help with the drains for about two weeks, then my arms were mobile enough that I could manage the care of that last drain myself. Your doc should give you specific instructions about the care of your drains. It helped me to see one before the surgery.

    There were two exercises I found really helpful that were recommended by my doc. One is to slowly climb your fingers (like a spider) up a wall or door, and then climb them back down. You should be standing close to the door/wall and climb high enough that you feel a stretch, but you shouldn't be feeling pain. The other was to sit upright in a chair without arms, then rotate your arm in a small circle, forward then backward. The elbow should be straight, but not stiff. It's the shoulder you want gently moving. Check with your doc about when to start exercising. I started about a week after surgery, and these should be done several times throughout the day rather than several repetitions once per day.

    I hope this helps. Please come back with any other questions you might have. And you have my support and positive energy for the 13th.

    Hugs,

    Linda

    Wishing you good luck with
    Wishing you good luck with your surgery. Positive thoughts and prayers coming your way from me.


    Hugs, Diane
  • cahjah75
    cahjah75 Member Posts: 2,631
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    Viranani
    I had bilateral mastectomy June 2010. Although I saw a plastic surgeon to discuss options I decided not to do any reconstruction. My drains were removed 10 days later. I had minimal discomfort and raised my arms so they didn't get stiff as soon as I was allowed. I had no lymph node involvement which was good. My incisions healed well. I had 6 rounds of chemo and 28 rads. I do have what is called "angel wings" on each side of my body. I see my surgeon next week and will discuss removing them as an outpatient. (I had to wait a minimum of 3 months post rads before any surgery.) Wishing you a successful surgery and take the time to heal and get well.
    {{hugs}} Char
  • aysemari
    aysemari Member Posts: 1,596 Member
    Options
    Welcome Viranani
    though I wish we didn't have to meet this way.

    My best advice to you would be prepare yourself. Make your home a haven
    to come back to. Move some plates and every day items down, since you may
    not be able to reach. Choose a comfy couch or love chair, to relax on, I couldn't
    lie down, it was too painful. Get all the books you ever wanted to read, music
    you wanted to listen to, movies you never got to see. Make yourself very comfortable.
    Also what I really loved were these heart shaped little pillows I got from my support
    group, they made a world of a difference, when I put them under my armpits. And
    of course get a bunch of shirts that button in the front if possible with pockets for
    your drains.

    Remember you are going through enough.. it's time to be gentle and loving
    to yourself. Don't worry if nothing gets done, if you can arrange for a house
    cleaning. And let's let the healing begin!

    Love,
    Ayse
  • Kylez
    Kylez Member Posts: 3,761 Member
    Options
    Viranani said:

    You are all fantastic!
    Oh, my...each of you is a total gem! Thanks, everyone, for the gold mine of information and advice-to say nothing of the good wishes and inspiration of your stories. Before my dx I had no idea how many people were walking around dealing with this. So, yes...I'm sorry to have to be here too, but it cracks the heart wide open, too. Not a bad thing, at all. I'm wishing the best for all of you on this long strange journey we share!

    So I found a wedge to sleep on...and will make sure I have everything ready and in reach(thanks, that's something I would never have thought of). In a warped way it feels like preparing to bring a baby home.

    And I have a ton of exercises to do,and lots to learn. Looked online about the physiotherapy that works so well, but alas, there's none locally.

    And for those sisters out there who told me to TALK TO YOUR DOCTOR!...you have my gratitude for the reminder about who's working for whom, because he sure won't be cheap!

    As for the not having reconstruction decision...it's both precepts(adornment and beautification are prohibited), and choice. Were I married (or unmarried and in the dating scene), or in a career where one's appearance is vital to success, the choice would probably be different. But as it is, it's not such a hard decision, and one I feel comfortable with. To tell the truth, I'm actually looking forward to throwing my bras away and never needing them again!

    [And yes, there are plenty of us Buddhist nuns out here, many kinds, but mostly in Asia. I ordained in Burma and spend a lot of my year there...though now my return will be just a wee bit delayed!!]
    Viranani

    Sending positive thoughts
    Sending positive thoughts and prayers for you!


    Hugs, Kylez
  • Angie2U
    Angie2U Member Posts: 2,991
    Options

    Yes talk to your surgeon.
    Yes talk to your surgeon. My Mom didn't when she had a single mastectomy and she has that roll of extra skin which she hates.. When I had my double I told my surgeon to take off the excess skin that I wanted my chest to be smooth. I have a nice smooth boy chest now.

    Get one of those pillows that is a big triangle. Can't remember what they are called. They make it is so much easier for you to get up after laying down. The also helped me sleep on my back while had my drains in. If you can't remember to roll when you get up. It will hurt if you try and just raise up the normal way from laying down.

    I really didn't have any pai. I did have this sensation on the cancer side like I had a big chunk of wood shoved in my chest at times.

    I did not know there was Buddhist nuns!

    I am adding my best wishes
    I am adding my best wishes and good luck to you.


    Hugs, Angie
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    Options
    aysemari said:

    Welcome Viranani
    though I wish we didn't have to meet this way.

    My best advice to you would be prepare yourself. Make your home a haven
    to come back to. Move some plates and every day items down, since you may
    not be able to reach. Choose a comfy couch or love chair, to relax on, I couldn't
    lie down, it was too painful. Get all the books you ever wanted to read, music
    you wanted to listen to, movies you never got to see. Make yourself very comfortable.
    Also what I really loved were these heart shaped little pillows I got from my support
    group, they made a world of a difference, when I put them under my armpits. And
    of course get a bunch of shirts that button in the front if possible with pockets for
    your drains.

    Remember you are going through enough.. it's time to be gentle and loving
    to yourself. Don't worry if nothing gets done, if you can arrange for a house
    cleaning. And let's let the healing begin!

    Love,
    Ayse

    Hi Viranani! Love that
    Hi Viranani! Love that name! I didn't have a mastectomy, but, it looks like you have been given some great tips and advice by the pink sisters.


    Best of luck to you!


    Sue :)
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Options
    Ritzy said:

    Hi Viranani! Love that
    Hi Viranani! Love that name! I didn't have a mastectomy, but, it looks like you have been given some great tips and advice by the pink sisters.


    Best of luck to you!


    Sue :)

    For Joanna
    There's lots of helpful advice here for you Joanna.