Post bilateral mastectomy- Can't stop crying

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Cathy_pa
Cathy_pa Member Posts: 23
edited March 2016 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

Hi.

I think my history comes up on my signature ... But I am trying to seek out support ... Im 43 and had a R lumpectomy w bilateral reductions in 11/2015 for R DCIS but had a positive genetic mutation so opted to for bilateral prophylactic mastectomies to avoid radiation and tamoxifen ... These were done 2/23/16. I will say oddly my first surgery was physically a tougher recovery than this second one... I had some medication complications immediately post op. But now my chest looks so horrible... The expanders already feel so hard, and I go in for my first fill tomorrow <gulp> I just keep crying and then I get so mad at myself because I just feel like I am feeling sorry for myself and that so many other women have had a much harder treatment and prognosis than I have had and I should be better able to feel good. I don't even want to get out of bed today. I'm having nightmares. I have 3 sons who really need me and dad is pretty good but doesn't seem like he really knows what the hell to do with me... Thoughts?? Anyone else feel like this?? I am looking at when I return to work as this looking thing... When it hurts just to drive around the block. The down side is, pain pills help but I can't go to the bathroom so it's a double edged sword. I'm trying to get by on the Motrin/ Tylenol and Valium at bedtime....

Sorry to rant... Just don't know where to turn... I feel like a burden everywhere els

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  • rainnyc
    rainnyc Member Posts: 1,289
    edited March 2016

    {{{{Hugs}}}} Be good to yourself! It's still early days, only three weeks? This is traumatic surgery, not only physically but emotionally. One thought is that you could ask your doc for some anti-anxiety medication. Another is just that it takes time to heal. It takes time to feel strong again, to take up the burden of running the household and being there for your family. Let them take care of you; it will help them feel strong. Let your friends help--has anyone offered? I know that for me, having friends around made an enormous difference, especially the fact that they brought in dinner for several nights. You don't say how old your kids are; can someone help out with them if they're little ones? Give it time. And maybe ask your doctor if there is someone you can talk to, i.e. a social worker, just to help you sort out what's going on? Good luck, and you always can find support here.

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  • badger
    badger Member Posts: 34,614
    edited March 2016

    hi Cathy and welcome to BCO, a great club you never wanted to join. I'm six years out from bilateral mx and my scars are pink now and fading. I didn't have reconstruction so no experience with expanders. I didn't drive for a month. Took two weeks off work then carpooled in with a co-worker for another two weeks. One is because it hurt and two is because I was still on pain pills and not legal to drive. I took stool softeners and drank a ton of water so wasn't too constipated. My hubby didn't know what to do with me either. I think he felt pretty helpless so he just didn't talk about it. Still doesn't, really. Good luck with your first fill tomorrow! gentle ((hugs))

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited March 2016

    Cathy_pa,

    I'm so sorry you're having to deal with all of this. That said, if you feel like crying, then that's how you feel. Rationalizing about it won't help. Getting mad at yourself won't help either. How you feel is how you feel!

    That other women have had a harder treatment doesn't mean you haven't had a hard treatment. You've had major surgery. They've amputated two body parts that you were (I assume) quite fond of! You're having nightmares. You're having trouble trying to balance between pain meds and being able to eliminate!

    And it's only been a little over two weeks since your surgery. Your lymph channels are just finally getting to the point where they would be healing (it takes 2-3 weeks!). You're just getting to the place where you can start doing post-surgery exercises. (No wonder it hurts to drive!)

    Do you have a therapist? Are you scheduled for physical therapy with a therapist who is familiar with lymphedema/breast cancer recovery? If not, that's what you can do. Schedule those things, and tell your family what you've done.

    Then make sure they understand you still need help. You don't say (in this post) how old your sons are. But even the youngest can help. You shouldn't be trying to lift anything heavier than 5 lbs at this point. That means you can't lift a gallon of milk!!!! You may not be able to lift one of your usual loads of laundry. Tell them you need to be in administrative mode for a while, as you regain your physical capacity. So make lists...lots of lists of the things that you usually do, and that need to be done. ID the ones you can handle. Then tell them you need help with the rest.

    And you may need to enlist carpools/friends/etc. to help with the driving until you're able to move your arms/shoulders freely.

    On the balance between constipation and pain control, there are threads about that where you may find some helpful suggestions.

    Give yourself a break!!!! You deserve it!

    LisaAlissa

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  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited March 2016

    Cathy, you are entitled to your feelings. Your DX and prognosis don't change the fact that cancer is huge bomb that goes off in the life of us who are DX'd. So please don't feel because others face different cancers and/or treatments that your feelings and worries are not valid or worthy. You need to express your emotions, don't bottle them up. It can be cleansing and healing.

    When I faced really difficult times I've reached out here but also to the American Cancer Society. They provide emotional support too. Here is the number and just tell them you need some emotional support and they can help. 1 (800) 227-2345. If you continue to struggle seek out a oncology trained counselor (ACS can help with that too).

    I had bouts of fear and crying too, like I've never had in my life before my DX. Some people even tried to tell me that I shouldn't cry and 'just be positive', which only made things worse. As time went on I found I wasn't the only one struggling to cope with the fear, sadness and depression that are the side effects of a cancer diagnosis.

    Your life has been changed, it will be different for you going forward, but you can learn to cope and be happy again, with help.

    (((HUGS)))) You are not alone. Hang in there!

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  • Cathy_pa
    Cathy_pa Member Posts: 23
    edited March 2016

    thanks so much for the feedback. It's been a rocky few months. I was diagnosed in October (oh yay breast care awareness month 🙄 Pink everywhere) had my first surgery 11/3/15 and then just few days after Christmas my mom got gravely ill, ended up in ICU on a ventilator. She got off, then chose hospice (she he had advanced COPD for 9 yrs- the last 5 were pretty uneventful) instead of rehab and passed away 2 days later 1/12/16.

    So, in addition to dealing with this, she is no longer in my corner, calling me daily, and just being my mom in general.

    My sons are 12, 7, and 7 and yes, I've had some meal help from a few good friends, not to mention my absolutely wonderful sister.

    I just hate the emotionality of it. I feel I have no control, and feel like the tears fall at any time and the last thing I want is for the kids to see that...

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2016

    Cathy- I am so sorry you are feeling this emotional pain on top of the physical. Everybody is different. Please don't ever compare your treatment or dx to someone else's. It's all relative and like was said above, you are entitled to your feelings. They are unique to you and all that your individual life brings to bear.

    Please do what you can to take care of yourself. It may sound silly, but not being able to go to the bathroom made me VERY frustrated and cry. I kept taking the pain meds because I was in a lot of pain. I also took a combination colace and senekot, which took care of the constipation.

    Lots of good advice above about accepting help.

    Big gentle hugs coming your way. You will feel better. It takes time. But have faith and confidence that it will improve. And we will be here for you

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  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited March 2016

    I understand wanting to shield your children but this is life. At some point you have to be a mom and human and your kids may learn (age appropriate) about life and how to cope with a struggle like cancer by watching how you deal with this.

    Courage is not the absence of fear (or tears) it is working through the fear and tears to do what you have to do, to be healthy for yourself and your family.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Cathy-

    Hugs! We know how difficult it is, but just know that you are not alone! As you can see from the responses you've gotten, we are here for you!

    The Mods

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  • jenjenl
    jenjenl Member Posts: 948
    edited March 2016

    You will find your strength!! You are so courageous to go through this and your kids adore you :) You are allowed to feel this way today and maybe tomorrow or tomorrow could be a much better day. I can't speak to TE but talk to your surgeon tomorrow - maybe you shouldn't have a fill or maybe it will help. Day by day, one foot in front of the other will get you to the other side. Be kind to yourself, you got this!

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  • StaceySue2U
    StaceySue2U Member Posts: 281
    edited March 2016

    I had my BMX with tissue expander placement on 2/24 and the emotions are really hard for me to deal with, too. Friday, I found out my cancer was much smaller than they thought it was. Originally it was supposed to be at least 3 cm, possibly 4.5cm with an 8cm line of microcalcifications but my final pathology after the BMX showed I had one 1.9cm diameter tumor and that was it. I didn't even have any DCIS or atypical hyperplasia or anything in the breast I had prophylactically removed. I'm beginning to regret my decision to have BMX and wishing I'd had lumpectomy although at the time I made the decision I knew that if I had to have mammograms every 6 months for years I'd drive myself insane with worry. I gave up very important body parts and I sure don't like how I'm looking right now - AT ALL. I hate it that I'm off work and can't do anything. I'm trying my best to be positive and just be grateful the cancer turned out to be so small and I have very low likelihood of recurrence. It could be so much worse. My aunt is stage IV.

    I understand how you're feeling :(

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  • Cathy_pa
    Cathy_pa Member Posts: 23
    edited March 2016

    wow!! Staceysue!! Our timelines really do line up right now... Yeah.... I waffled back and forth about bilat mastectomy too, thinking was it too aggressive? but getting to avoid radiation, tamoxifen AND Mammos which would now forever freak me out... Plus I have a genetic mutation (not BRCA but CHEK2) which makes recurrence pretty likely within 10 yrs.. And if it comes back it will be more likely invasive... I didn't like those odds.

    But yeah. My chest looks awful. It's like two marshmallows that got run over by a truck....I'm pretty low about it... Tomorrow I see my plastics guy for my first fill. Have you had yours yet?? How bad is it?? I'm arranging a ride so I can take a pain pill and a Valium....it's all still so sore....even my skin hurts!



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  • cmpage
    cmpage Member Posts: 1
    edited March 2016

    OMG! Cathy, (I'm also Cathy) I'm going through the exact same thing! I had my bilateral mastectomy on March 4th and I'm freaking out! I don't know what's wrong with me, I was doing so well through Chemo and everything and now I'm having nightmares and I get my first fill this coming Friday! Please let me know how yours went.

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  • Englishmummy
    Englishmummy Member Posts: 337
    edited March 2016

    I just wanted to say I am 41, I have 3 younger children (and I even live in Colorado!) I am 9 mths from my BMX and 5 from my exchange and I feel really good: all looks and feels great, I excercise strenuously daily and have no problems. It is still very early days for you Cathy, and it will get better - I think it is sometimes hard for us gals to be patient and allow others to do things for us.

    I haven't really seen this anywhere on here (the boards) but my PS warned me several times and quite severely, about post anesthesia depression. He told me that an anesthetic for a big surgery takes several weeks/months to fully exit ones system and during that time depression OFTEN occurs. Apparently, some people even become suicidal - he impressed upon me that it is a very real thing and to let someone know if I had any overwhelming feelings of depression (like who wouldn't be overwhelmed after being dx with BC -mine was bilateral:P). He said it can last several months post op. I am not diagnosing you, merely bringing it to your attention as many people seem very unaware that it can happen and it may be hard to distinguish from feelings that come with a BC dx.

    Don't belittle your dx, or hide your feelings: it is yours, they are yours and it IS huge, no matter where you fall on the line, but if you are unable to lift your mood PLEASE tell someone in your care team, there is no reason for you to suffer anymore than you all ready have.

    This is an article about that very thing:

    http://www.alternet.org/having-surgery-what-you-ne...


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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited March 2016

    Cathy, I completely understand. I had a BMX 2/4/16, due to gene mutations (PALB2 & Chek2), after having LX initially. It has been so horrible. I never in a million years thought it would turn out so badly. I had a huge area of tissue necrosis (tissue turned black and died), which resulted in a gigantic open wound after the PS cut it all out. Then the other side started draining. At this point it has been 6 weeks and they still haven't healed up. It looks so terrible,

    I went to a psychiatrist last week because I feel so depressed and apathetic, no energy and no interest in anything, can't seem to get up off the couch. She diagnosed me with PTSD and depression. She put me on an antidepressant and something to help me sleep. It's only been a week, so I don't know if the antidepressant is working, but I am getting some sleep now.

    I guess this is a long way of saying, I get it. I get it. I thought I would be okay with this, but I'm not and I am so surprised that I'm not. I feel utterly mutilated. I think under the circumstances it's not unreasonable that we would feel anxious, depressed, and weepy. This is probably the worst thing that has every happened to us. However, we are entitled to our feelings and we need to feel our feelings, so that we can process them. Pushing them down for the sake of shielding others will only result in more depression and dissatisfaction. I know you want to spare your children, but trust me, they know something is up. If your DH doesn't know what to do with you, TELL HIM. Most men don't take subtle messages well, but especially when the wife is ill. A lot of men feel helpless and they don't like it--men like to fix things and this is one thing they cannot fix.

    I wish you good tidings. It's good to come here to BCO, where you know there are people who understand where you've been and where you're going. Best of luck to you,

    Cathyd

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  • Cathy_pa
    Cathy_pa Member Posts: 23
    edited March 2016


    To Englishmummy

    wow... Just finally getting round to reading up on some replies. This is so illuminating. Thanks for sharing that artical, that info, and letting me know where you are. It's been a tough year but I know things will sort out. I have great family support and some pretty darn awesome friends.


    We actually took a few days to escape with the kids to the in laws while I'm still off work and the family is on spring break... They live about 6.5 hrs away. That may not sound like most folks idea of a break but they are so wonderful to us and just getting to rest, sit back, and watch them love on and spoil our boys has been great. I'm getting to a better place.

    Really. I can't thank you enough

    Cathy


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  • Cathy_pa
    Cathy_pa Member Posts: 23
    edited March 2016

    To Mustlovepoodles


    Thanks for your care and feedback. I'm so sorry your post op course has been so awful. Wow. It is devastating ... When I read your summary... I saw your note "my breasts are trying to kill me" and it reminded me of the first thing that came into my mind when I was diagnosed... "That my own body had gone rogue" I couldn't sleep either.

    I'm glad you went in for help. I had to as well, my mom died about 3 weeks before my original mastectomy date and I too just was never able to sleep. And I think we just get into GO mode and think we can handle all this, and schedule appointments, and think we can just add it to all that we need to do but eventually the time comes that reality shows up and says... It's not really as easy to process as you think.

    Just know I am thinking of you and hope you have faith in your PS.

    (((Hugs))))

    Cathy

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  • Englishmummy
    Englishmummy Member Posts: 337
    edited March 2016

    Sounds like a fabulous break to me....how lucky you are to have such wonderful in-laws. Glad you got to rest and enjoy...you already sound a little better, at least in your writing. Hugs for continued recovery of body, mind and spirit.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited March 2016

    Cathy, - Your feelings are completely understandable! I am glad that you got away, and are feeling better! I am so sorry about your Mom, - it is so hard to lose a parent, no matter how old we (or they) are. Take good care of yourself and, as others have said, let your family and friends help. Don't rush into doing too much. Your body needs to heal!

    Englishmum, - Thank you for sharing that article!


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