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Overwhelmed and heartbroken.

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  • debal
    debal Member Posts: 600
    edited March 2019
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    totally normal to have drainage and she may notice more the more active she becomes. The amount you mentioned is normal. At this stage you want the drainage to come out otherwise its accumulating inside which you dont want. I agree, good chance the shaky feeling is from anesthesia. I recall feeling that way. Wishing your wife a speedy recovery!

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    calikelly- I have to agree with you. I had 4 drains and very little drainage. My surgeon was not concerned at all. My tubes were removed within 8 Days post op. The insertion points of the drainage tubes became very irritating. One of the ladies on this bco thread recommended wrapping a light compression bandage around your chest. Very loosely to prevent the tubes from pulling. It worked.

  • debal
    debal Member Posts: 600
    edited March 2019
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    jo, great point about the compression bandage. So many good ideas on the board! After the fact I saw someone post about buying a hoodie one size up and wearing it inside out. Drains fit in the pocket. Genious!!

    After all my years working in surgery I never thought in a million years I would be following my own discharge instructions. Crazy. Hope I didnt cause any confusion. I didnt mean no drainage was a problem.. I guess I meant having drainage at this stage and fluctuation is normal. I was on the bubble calling my PS about drainage a few times but i considered how active i was that day since it played a part for me. The amount of work done in surgery plays a part. My PS told me in recovery drain #3 will drain the most and boy he was right. What a pain. He told me to name the 4 drains after harry potter characters. #3 was Voldemort.

    As for ideas..we give a simple lanyard out with the supplies. Hangs around your neck then you can clip the drains and be hands free at the sink without worry of them pulling out. We all will get though! I'm glad your wife has this surgery behind her!


  • rah2464
    rah2464 Member Posts: 1,192
    edited March 2019
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    My PS sent me home with a nice little velcro belt that you could attach the drain bulbs to. And I agree about something that very lightly wraps to keeps drains stable while not closing them off. Because when those drains move ugh

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    DebAl-The inside out hoodie didnt work for me. Way too hot in Miami for a hoodie. I could have kissed my surgeon when he removed my drainage tubes after 8 days. I was a very happy camper. For myself, it was the most annoying part of recovery. Ladies, we are tough and we deal with whatever comes our way. When I woke up in recovery from my BMX the only thing I could feel was relief. Have a great weekend

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @CaliKelly, OMG!!! You had me LMAO with the extra reps thing!!! 😂😂😂

    Thanks everyone for the ideas!!! I ended up using some extra braided cotton cord that I got for a pair of her pajamas that lost its ribbon for tying, and made a lanyard for the drain bulbs. Works great!!! Just tied a few knots at either end to build up the fabric, then put the safety pins through the knots and then through the labels of each bulb. I tied a knot about half way between her neck and the bulbs, tying both lengths together, so they stay even at all times.

    I will definitely mention the hoodies idea to her.

    They are draining much more now since my last post. After I posted, I went back and squeezed the shizz out of both tubes, from her body, all the way to the closest point on the bulbs. I think that worked. Though the directions say to do so, I think we just were not squeezing enough?? It's not like she ever lost suction, it just seemed to be clogged, without really ever showing clotting. We have to document the amounts at least twice daily.

    At first, the drainage tubes were giving me the heebee jeebeeies, but last night when she was feeling jittery and like she was going to faint, I wasn't sure if that was happening due to low blood preassure, or she was feeling grossed out by the drainage tubes. For her, I got past it, just to handle it for her. I don't need her passing out and hurting herself.

    We had a great day today!! Chilled out in bed, watched tv, ate food. Lol nothing exciting, just oatmeal and some damn good salads made by her hubby. Haha!! She says the food always tastes better when someone else makes it. Lol

    Down time for us is unheard of. We have full time jobs during the day, and we are farmers for our business at night. So it was very nice to just chill out. 😊

    Thanks again everyone!! Will update again soon.

  • debal
    debal Member Posts: 600
    edited March 2019
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    rah, those drains were definitely a pain

    Jo, I recall the feeling of relief when waking up in recovery too.

    Heartbroken, glad the lanyard idea is works. Each day gets a little better!

  • SuQu31
    SuQu31 Member Posts: 73
    edited March 2019
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    Another idea for drains is to use a waitress apron or a gardening apron with pockets for the drains. No safety pins. I also bought an apron with a pocket made of netting on Amazon and used it in the shower. The idea of pinning and unpinning did not appeal to me. I had to have re-excision 10 days after surgery, so had drains a long time. Drains are a pain, but temporary, thank goodness. And after such a stressful time, just watching movies together is so wonderful!

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    Hi all!!

    So far, so good!! We went to her plastic surgeon yesterday and they removed one of the tubes.

    My wife's mastectomy side looks bruised and swollen. One of the resident docs looked at it and took pics for the primary plastic surgeon. We left, and they asked us to come back so another resident could take a look. He seemed slightly concerned at the level of swelling. Told us to monitor it if it gets worse to let them know.

    The other thing we noticed was the last couple of days, the blood in the drains were really dark. I told my wife that usually means old blood, the doc confirmed.

    So, we wait on that. Hope the swelling goes down soon. I asked if we should ice it down, they said no, that's only for pain. I don't know. I'm at that age where I'm having a hard time accepting directions from doctors younger than my own kid's ages... lol

    Apparently we won't be talking to an oncologist as they are only involved when radiation or chemo is needed. My wife went though with the mastectomy to avoid radiation. So this was news to us. We thought everyone diagnosed with cancer gets an oncologist attachment. Lol

    She's napping now. Speaking of her sleeping, she has been having bad dreams every night, ever since surgery. Even at her nap times too. Also, she's been really emotional. Emotional about me and worried about her health and longevity. She is NOT an emotional person, I take that spot usually lol. As much as I appreciate the emotions, it's just out of character for her. I always tell her she's like a robot!! 😂😂😂 she gonna kick my ass for sharing this... for sure. Lol I share only because I worry, and I know you all have traveled this path, and have been SO incredibly supportive and informative. I appreciate any feedback about what she may be going through.

    We are still waiting to see what stage she is.

    Thanks so much for all ya's do for us!!


  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    Hi guys! About the emotional changes, I think the more you consider yourself healthy and strong, the harder to come to terms with being merely mortal! I was almost arrogant about my good health, so much so that I didn't always get mammos, and check ups, etc. Big mistake on my part🤣Anyway, I'm not particularly emotional normally either, but I used to sob in the shower, and curse and just freak out, but where nobody saw me. That was also a mistake, felt lonely in my emotional state. I had some bad dreams as well, all dealing with a feeling of loss of control. So the emotions are gonna come out! Good news is, after treatments, sense of more control re-asserts itself, confidence in my good health, my return of strength, feeling full of vitality and even more, a kind of pride, that I took it all on, and kicked cancer's ASS! As for the young doctors, mine were all babies!, but great because they're so interested, and up on all the latest, and invited my input more so than older doctors. Best wishes for speedy recovery and back to the gym, where my sanity was preserved! Kelly

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @CaliKelly, thanks so much for the info. I read your reply to her. :)

    Glad you kicked cancers ass!! You are very inspiring to my wife. Thanks again!!

    I have a question for you, should you choose to answer, you wouldn't happen to have any root canals in your left upper jaw, would you??

    I ask because, we are seeing more and more how root canals are causing alot of health issues in people.

  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    You know what's weird? I had one root canal, upper left side! I'm going to do some research on that! It was the worst dental experience ever! 💕 to the Mrs.🤙

  • melissadallas
    melissadallas Member Posts: 929
    edited March 2019
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    Heartbrokenhubby, there is absolutely no truth to what you are reading about root canals, and wherever you are reading that is not a valid medical souce.

  • alto
    alto Member Posts: 82
    edited March 2019
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    Heartbrokenhubby, those pain meds can cause some emotional reactions. Morphine-like drugs can cause depression-like symptoms, especially withdrawing from them (you may not even realize she was given them in the hospital). That combined with exhaustion and pain can cause some weepy times.

    Yeah, don't ice it down in this case - there's too much numbness for her to tell whether she's getting frostbite.

    Oncologists can be involved if there's adjuvant therapy (like Tamoxifen) as well. But in my experience, they let you recover from surgery, get the pathology back, and then figure out who you should meet with next.

  • tb90
    tb90 Member Posts: 284
    edited March 2019
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    Heartbroken. Glad you are so supportive. But please be supportive in the way she needs you to be. Not in how you need or think it should be. I do not mean to be anything less than supportive and I can see how much you care. But we need to be what our loved ones need us to be. That takes sensitivity to their ups and downs, adjusting our responses to their personalities and being in tune to their needs. She needs space sometimes and hugs other times. Your deep concern for her health can actually add stress. I kicked my husband out if my room just before my surgery because of the concern in his face. Take time to have fun and be yourself. She does not want to see your worry and concern daily. Balance your life and be healthy. That's what she may really need

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @ CaliKelly, my wife got a root canal, upper left, a little over a year ago. The specific tooth is straight to left breast cancer.

    @ MelissaDallas, thank you for the info. I was wondering if it was a push for people to get their root canals extracted and get zirconia implants lol. Multiple sources are stating that even if extractions are not done right, removing the periodontal nerve, this can have the same result.

    We saw the documentary "Root Cause", but we are also receiving info from a few of our homeopathic and biological doctors...

    I would assume, like everything, more studies and research.

    @alto, thanks for the info!! Great point about the frostbite.

  • dtad
    dtad Member Posts: 771
    edited March 2019
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    Heartbrokenhubby...I said it before and I'll say it again. You are one amazing husband! I didn't read all of your back posts but I read a lot of them. I'm assuming she hasn't been staged yet because the lymph node status isn't available yet. That being the case, an oncologist still could be needed. I just don't want you to have any surprises. We are all here for you guys. Good luck and keep us posted.

  • simonerc
    simonerc Member Posts: 154
    edited March 2019
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  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @dtad, awweee thanks so much!! I try my very best always. She is my everything!! She did have the two sentinel nodes removed with two tiny nodes right by the second sentinel. All the tests for those came back negative for cancer. :)

    @SimoneRC, thanks for the fact check!!


    So my wife just sent an email to both surgeons. I just drained her tube for her and I suggested we take a look at her left mastectomy. It looks bad. Very bruised all over. It's getting worse by the day. The blood from the drains are very dark, almost black looking. We have read online that the brushing could go for eight weeks. We are just afraid the skin may die off and she would have to have everything removed.

    I hope this is just normal. Right now, I'm trying not to freak her out about it. But she is really worried.

  • dtad
    dtad Member Posts: 771
    edited March 2019
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    Hi again. Glad to hear she already had her nodes removed and tested! I'm not a doctor and I'm not there but I am a RN. I also think she should see the breast surgeon. However bruising is normal and it will get worse before int gets better. Also dark drainage usually means the bleeding is coming to an end. As far as your concern about the skin dying off, that would be very unusual. Good luck and keep us posted.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @dtad, thanks for the info. We are waiting for one of the surgeons to get back to us. My wife said nothing feels any different in that area, so we may be making it bigger than what it is.

  • hapa
    hapa Member Posts: 613
    edited March 2019
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    I had almost no bruising right after my BMX. A week later I had lots of bruising below my left boob, but still nothing on the boobs themselves. Two weeks after the boobs were looking pretty bad and I was worried it was necrosis. My PS said that was par for the course - I had clotted nicely to stop the bleeding, which is why I had no bruising right after, but after a while the body started breaking down and reabsorbing all those clots, which resulted in a bruised look.

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited March 2019
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    @hapa- Thank you so much for that feedback! We’re over here freaking out about possible necrosis as well. Follow up with surgeon on Tuesday so we are looking forward to getting some formal feedback at that time.

    @CaliKelly- I’ve been doing light leg work and using my drains and body as my guide. Thank you for hitting the gym for me! It sounds like we have much in common, including trying to repair our damaged armor :) Are you on IG? If so please message me your user name. I’d love to connect there as well.

    To everyone...My husband reads these posts to me and keeps me updated while I hang in the background trying to come to terms with it all. Thank you everyone for your feedback and support for both myself and my husband. We have truly found this forum, specifically this thread, to be one of our greatest strengths for knowledge and pillars to lean on. Love to you all

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    zambonisgirl- before you know it you'll be back in the gym. Most importantly, listen to your body now. My whole chest looked like I had been kicked by an angry mule. It wasn't painful, damn ,it was ugly. It's always best to check things out with your surgeon to be on the safe side. I relied on these threads heavily during my recuperation and prior to my surgery. Hang in there.

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited March 2019
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    jo6359- Angry mule for sure! Haha Do you recall how long it took you to get back into ‘normal mode’ at the gym? I know everyone is different but I’m not sure what to even guess is nornal

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    zambonisgirl- I was running within three weeks; very slowly and doing lower extremity strengthening exercises. I had full active range of motion in both upper extremities within 5 days. I'm an occupational therapist and my friends are therapists so we worked diligently on my rehab. I was also very much aware of not over stressing weakened muscles. I didn't have reconstruction so my situation is different from yours. Reconstruction is more challenging. You are a bodybuilder and you will be in the gym soon enough kicking butt.

  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    Zambonisgirl, I went to the gym within a couple of weeks, because I was having withdrawal symptoms! But my Drs were pretty insistent that I not lift any weights for 4 weeks, then only 10 lbs, I told them I have earrings heavier than that! They actually said 6 weeks but I negotiated with them, bargained them down to 4😄 did mostly lower body, with light arm workouts. I had a couple of recon surgeries over a year, after the latissimus dorsai flap surgery, it took a little while to build upper body strength back up, but it sure has been fun!!! I'm not a body builder but have always done weight training, the treatments slowed me down, especially chemo, radiation, had no problem except some skin burns, nothing bad. Now I'm going full force, at least as much as I was before cancer. Have a bad knee, so leg workouts have changed more to dancer type workouts, and light leg training. I am on Instagram, you all should follow me I'm trying to get back into my artwork and would love more followers! @kellybeachgirl. You hang in there girl! You will so love it when you're back in action💗💗💗

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    Kelly-Exercise is so important to my mental, emotional and physical health. It is never a chore but a part of my being. You inspire me with your enthusiasm.

  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    So right, Jo, I for sure would have gone nuts the past few years without physical exercise! The gym, or the bike path have been my sanctuary, my happy place!

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited March 2019
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    CaliKelly- Following you on IG! :) I’m @vegangarlicgoddess in insta. We own an organic garlic farm, in case you were wondering lol. That profile is @garlicbreathfarm :

    Jo - If you are on IG, please share if you want to connect!

    Same for everyone!