my recovery

Kaymc
Kaymc Member Posts: 19
edited March 2014 in Breast Cancer #1
My first time here. I had a bilateral mastectomy 2/20 with extender implant reconstruction. (see I don't even know all the acronyms or initials yet). Anyway I have an extremely stressful job and just went back the 2nd week of April. I have been having the reconstruction injections since then also. Kind of fasinating to watch what is left of my breast grow each week. I had some nerve damage which has caused me some extreme pain that physical therapy has not helped. Went to choripractor last week and I am cautiously optomistic.
I have not done any on line support group or blogs or anything before.
I am feeling kind of lonely, my husband tries real hard but that just isn't cutting it! I have been extremely emotional, because I had estrogen positive invasive lobular cancer with negative node involvement I did not have to have chemo but was put on anti estrogen drug which sent me into raging menopause, which doesn't help at all!
And now ther is hair growing wildly and quickly on my breasts! There are so many things you are not told before the surgery and som much info to weed through, I'm just sort of at a loss right now and wondering what next. Feedback????

Comments

  • seof
    seof Member Posts: 819 Member
    I am happy that you have a
    I am happy that you have a loving husband, but someone who has not "been there/done that" cannot offer support like someone who has. This site is a good place for support and the voice of experience. I did not have the same experience you did, but I would definitely talk to the Dr. about the side effects of the drugs. Always write down questions as they occur to you and take your notepad with you to the Dr. to write down the answers. You can also go on chemocare.com to look up specific drugs and their side effects to see if what you are experiencig is common. It may be that the Dr. can find something else or adjust the dose if it is affecting your quality of life that much. You can also look on the American Cancer Society website or call to find a local unit that you could hook up with to find support in your area.

    I wish you well. seof
  • zahalene
    zahalene Member Posts: 670
    Welcome Kay
    You will find a lot of help and support here. My situation was quite different from yours, mastectomies with no recon, but I just wanted to let you know that it does not last forever, you get through it and there IS life after cancer, and it is GOOD.
    I was dx (diagnosed) the first time in 1986 at age 38 and now I am 60 and still kickin'. A lot has happened besides cancer, but that's life and ____ happens (fill in the blank), and we deal with it and move on.
    So stick with us, babe, and we'll hold the flashlight for you and keep the path light enough that you don't feel alone or lost. I know our loved ones try to be helpful, but until they have walked in this road they just don't know the hills and turns it takes.
    God bless. You will be hearing from others who have similar experiences and can share thoughts and feelings with you. Hugs.
  • chenheart
    chenheart Member Posts: 5,159 Member
    Hello!
    Welcome to this family~ we will indeed hold your hand and guide you through this maze called cancer! We have different diagnoses,staging, treatment plans, and side effetcs to varying degrees, yet we have The Beast in common and this binds us together.

    We understand your lonely feeling; and bless your husband's heart for being and doing all he can. Please feel free to come in here at any time~ we are an intelligent compassionate group of women and men, both survivors and caregivers. The wonderful thing about these boards is that they are available 24 hours a day...a real God-send for the times our minds are racing, and we can't fall/stay asleep. When the "what if" monsters are roaming freely through our psyche, this place will work wonders!

    This is the only online group I ever availed myself of~ and trust me, these friends are truly family. You will be amazed at how quickly you will feel comfortable and comforted!

    Hugs,
    Claudia
  • mmontero38
    mmontero38 Member Posts: 1,510
    Welcome to the club Kaymc,
    Welcome to the club Kaymc, not that we want to be here but this is a great place and I'm glad you found us. All of us are at different stages of treatment or beyond, so feel free to post any questions or doubts and we will do our best to help out. It's very hard explaining to our loved ones what we feel. I think they feel that once we are diagnosed, have surgery, and finish our treatments we should move on, but it's hard to move on so quickly, and fear of recurrence and even the changes in our bodies have us in a sense of suspension. That's what is so great about this board. We've all been there, done that and held each others hand. Feel free to vent or post an encouraging word any time. Hugs, Lili
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Welcome, Kaymc!
    Though sorry for the reason you're here. Like you, this site is my first and only online social network. I joined just a few weeks ago, to mark my 5 year anniversary of completion of all invasive treatment (lumpectomy/chemotherapy/radiation). Still taking meds: 2 years Tamoxifen (no side effects) & 3+ years and counting Arimidex (totally different experience).

    No matter how much our family & friends love & care for us, and as others have already said, they cannot truly understand what we experience as cancer patients & survivors. We are all here for the same reasons. Because we DO understand. And we wish to help & share advice, support & encourage each other. There is much to gain within this amazing group of folks with open hearts.

    My own onc used skiing for this analogy:

    Naturally occurring menopause = You reach the top of the mountain on a standard chairlift, a slow ride. You disembark via a little hop, and get to the bottom by skiing criss-cross at a leisurely pace.

    Chemically induced menopause (i.e., US!) = You get to the top via a helicopter, and JUMP out from high above the peak! The run is chock-full of moguls (huge bumps) & bowls (huge depressions), which must be traversed at breathtaking speed! We are lucky to arrive at the bottom without broken bones!

    Kind regards, Susan
  • cats_toy
    cats_toy Member Posts: 1,462 Member

    Welcome, Kaymc!
    Though sorry for the reason you're here. Like you, this site is my first and only online social network. I joined just a few weeks ago, to mark my 5 year anniversary of completion of all invasive treatment (lumpectomy/chemotherapy/radiation). Still taking meds: 2 years Tamoxifen (no side effects) & 3+ years and counting Arimidex (totally different experience).

    No matter how much our family & friends love & care for us, and as others have already said, they cannot truly understand what we experience as cancer patients & survivors. We are all here for the same reasons. Because we DO understand. And we wish to help & share advice, support & encourage each other. There is much to gain within this amazing group of folks with open hearts.

    My own onc used skiing for this analogy:

    Naturally occurring menopause = You reach the top of the mountain on a standard chairlift, a slow ride. You disembark via a little hop, and get to the bottom by skiing criss-cross at a leisurely pace.

    Chemically induced menopause (i.e., US!) = You get to the top via a helicopter, and JUMP out from high above the peak! The run is chock-full of moguls (huge bumps) & bowls (huge depressions), which must be traversed at breathtaking speed! We are lucky to arrive at the bottom without broken bones!

    Kind regards, Susan

    Susan, good analogy from your onc doc, it is very much like you said. I always said I was slammed into it by the chemo, which the onc did not tell me, I asked because of the Arimidex, but finally got my answer from the surgeon. Your dx is very much like mine, except I am now lnly two years out, but that five year mark will come. Do you have problems with the Arimidex? I haven't noticed much. Let me know!

    Cat
  • cats_toy
    cats_toy Member Posts: 1,462 Member
    Great site, great people
    Welcome (unfortunate, but isn't it for all of us?), this is a great site you found, with a huge group of wonderful people. I just found it recently myself, and you will find a lot of information from a lot of different people and their individual experiences. Take care and keep up the good fight!
    Cat
  • Jeanne D
    Jeanne D Member Posts: 1,867
    cats_toy said:

    Great site, great people
    Welcome (unfortunate, but isn't it for all of us?), this is a great site you found, with a huge group of wonderful people. I just found it recently myself, and you will find a lot of information from a lot of different people and their individual experiences. Take care and keep up the good fight!
    Cat

    Kaymc, you sound frazzled.
    Kaymc, you sound frazzled. Are you on any nerve pills? You might want to talk to your oncologist about that. Having cancer is so hard and so nerve wracking. It is a roller coaster ride that never seems to stop. So sometimes, we need a lil help to just calm us down..even us out. This is a very trying time for all of us and even though we may act like we are sooooooooooo strong...we really aren't. So, welcome to the site and talk to your doctor. :))
  • dbs1673
    dbs1673 Member Posts: 203
    Jeanne D said:

    Kaymc, you sound frazzled.
    Kaymc, you sound frazzled. Are you on any nerve pills? You might want to talk to your oncologist about that. Having cancer is so hard and so nerve wracking. It is a roller coaster ride that never seems to stop. So sometimes, we need a lil help to just calm us down..even us out. This is a very trying time for all of us and even though we may act like we are sooooooooooo strong...we really aren't. So, welcome to the site and talk to your doctor. :))

    come on in....
    our doors are always open Kaymc. I had a bilateral mastectomy in June 08 with expanders put in at that time. I had radiation that ended in October and just 3 weeks ago had the expanders removed and got the implants. Those weekly fills with the expanders can be uncomfortable. The hardness was also restrictive to say the least. It's like watching yourself go through puberty again. Whether you have a stressful job or not, this whole thing is stressful and exhausting. There does not have to be a rational explanation for "feeling". When my "GAS" (aka Give A ****) tank is low, I ask myself if I have any regrets up to this point. I can honestly say I don't so I can keep going. This is not a dress rehearsal and really what kind of practice could any of us have had.

    PS- Cats_toy I love your tatoo...beautiful, hopeful, peaceful!

    dawn
  • Kaymc
    Kaymc Member Posts: 19

    Welcome, Kaymc!
    Though sorry for the reason you're here. Like you, this site is my first and only online social network. I joined just a few weeks ago, to mark my 5 year anniversary of completion of all invasive treatment (lumpectomy/chemotherapy/radiation). Still taking meds: 2 years Tamoxifen (no side effects) & 3+ years and counting Arimidex (totally different experience).

    No matter how much our family & friends love & care for us, and as others have already said, they cannot truly understand what we experience as cancer patients & survivors. We are all here for the same reasons. Because we DO understand. And we wish to help & share advice, support & encourage each other. There is much to gain within this amazing group of folks with open hearts.

    My own onc used skiing for this analogy:

    Naturally occurring menopause = You reach the top of the mountain on a standard chairlift, a slow ride. You disembark via a little hop, and get to the bottom by skiing criss-cross at a leisurely pace.

    Chemically induced menopause (i.e., US!) = You get to the top via a helicopter, and JUMP out from high above the peak! The run is chock-full of moguls (huge bumps) & bowls (huge depressions), which must be traversed at breathtaking speed! We are lucky to arrive at the bottom without broken bones!

    Kind regards, Susan

    Love the analogy! And I do
    Love the analogy! And I do hope to reach the bottom in one piece! Aporeciate your reponse and sentiment.
    I'm on Femera a newish one and can't wait until the side effets at least slow down. It has only been 2 months and I know I'm probably looking at 2 + years. Oh just jolly, huh? Thanks, Kay
  • Kaymc
    Kaymc Member Posts: 19
    zahalene said:

    Welcome Kay
    You will find a lot of help and support here. My situation was quite different from yours, mastectomies with no recon, but I just wanted to let you know that it does not last forever, you get through it and there IS life after cancer, and it is GOOD.
    I was dx (diagnosed) the first time in 1986 at age 38 and now I am 60 and still kickin'. A lot has happened besides cancer, but that's life and ____ happens (fill in the blank), and we deal with it and move on.
    So stick with us, babe, and we'll hold the flashlight for you and keep the path light enough that you don't feel alone or lost. I know our loved ones try to be helpful, but until they have walked in this road they just don't know the hills and turns it takes.
    God bless. You will be hearing from others who have similar experiences and can share thoughts and feelings with you. Hugs.

    Thank you so much and all of
    Thank you so much and all of you that responded. I am trying to improve my life, but it is hard when I'm stressed out and tired all the time. Every night I think ok this is the night that I start exercising again, but it doesn't seem to happen. Anyway thatnks to all of you for the encouragement and support, I guess I needed it more than I would admit! Kay
  • Kaymc
    Kaymc Member Posts: 19

    Welcome, Kaymc!
    Though sorry for the reason you're here. Like you, this site is my first and only online social network. I joined just a few weeks ago, to mark my 5 year anniversary of completion of all invasive treatment (lumpectomy/chemotherapy/radiation). Still taking meds: 2 years Tamoxifen (no side effects) & 3+ years and counting Arimidex (totally different experience).

    No matter how much our family & friends love & care for us, and as others have already said, they cannot truly understand what we experience as cancer patients & survivors. We are all here for the same reasons. Because we DO understand. And we wish to help & share advice, support & encourage each other. There is much to gain within this amazing group of folks with open hearts.

    My own onc used skiing for this analogy:

    Naturally occurring menopause = You reach the top of the mountain on a standard chairlift, a slow ride. You disembark via a little hop, and get to the bottom by skiing criss-cross at a leisurely pace.

    Chemically induced menopause (i.e., US!) = You get to the top via a helicopter, and JUMP out from high above the peak! The run is chock-full of moguls (huge bumps) & bowls (huge depressions), which must be traversed at breathtaking speed! We are lucky to arrive at the bottom without broken bones!

    Kind regards, Susan

    And congrat on passing the 5
    And congrat on passing the 5 year mark--keep on trucking!
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Kaymc said:

    Love the analogy! And I do
    Love the analogy! And I do hope to reach the bottom in one piece! Aporeciate your reponse and sentiment.
    I'm on Femera a newish one and can't wait until the side effets at least slow down. It has only been 2 months and I know I'm probably looking at 2 + years. Oh just jolly, huh? Thanks, Kay

    My onc's "skiing" analogy...
    Cat & Kay: Am glad you both enjoyed my onc's "menopause like skiing" analogy. He's a great doctor, and I'm grateful to be in his care. He often assures me that we WILL grow old together (we're about the same age)! I'll be sure to pass along your compliments at my next follow-up appointment with him.

    Kay, the "journey" never ends!

    Kind regards, Susan
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Kaymc said:

    And congrat on passing the 5
    And congrat on passing the 5 year mark--keep on trucking!

    Kay...
    Heartfelt thanks!

    Yes, I most certainly intend to continue along the journey with steadfast steps all along the road...

    Kind regards, Susan