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October Surgeries/ No Need for Awareness, It's Reality!

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  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- glad you took a half day off work. Good luck to you tomorrow. Hoping for a easy time and quick recovery.

    Pommom- I understand the long wait time. My surgery is scheduled in 5 weeks. Exactly 6 week from when I finish chemo and that was the longest time they could make it. They were also having to coordinate two surgeons. The anxiety of knowing it’s still in you ugh is so hard. Your time is coming soon. Find thingsto think about beside cancer. Easier said then done for sure.

  • lw422
    lw422 Member Posts: 1,412
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    MavericksMom--just stopped by to wish you well today. I hope everything goes smoothly and you will soon put this behind you. Hope we can hear from you as soon as you feel well enough. Big HUGS!!

  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- think of you today!! Hope all is going well!!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Hi everyone, well I made it! If there is such a thing as a great surgical experience, I had that! Everyone, doctors, PAs, nurses, those who work the desks, all were amazing. I came home same day around 5 pm. So far way better than being in the hospital. Pain has been manageable although a bit more this afternoon than yesterday. I am trying to keep on top of it. Drains are doing their thing. Surprise, Surprise, my doctor's office called this morning to see how I was doing! This has never been my experience before, and I had 16 surgeries, although two were c-sections and very happy occasions.

    Recuperating at home is so much better than being in the hospital. I live in my comfy pj's vs hospital gown, no one wakes me up when I am asleep for blood pressure and temperature checks. I eat what I want, when I want, same with using the bathroom, and it is my bathroom not a public one!

    Husband is not that helpful due to his own health issues but has been great support. He is actually napping now; I think all the stress of my surgery has gotten him down too. He feels the same relief I have now that it is in the past and I am finally free of breast cancer forever!

    Many thanks for all the well wishes! Very much appreciated. Also, fivetimes, I remembered how your recovery went so I am really on top of pain management, more so than if I wasn't reminded by your post of feeling so well after the surgery before all the fantastic drugs wear off! I hoped to just stay on Tylenol but caved and took an oxycodone last night and another this afternoon. I am being more proactive against pain for the first few days at least, hopefully I will be able to get by with only Tylenol very soon.

  • serendipity09
    serendipity09 Member Posts: 769
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    So happy you are at home and now on the road to recovery!

    Some friendly advice...

    Do not try to endure the pain! Take the pain meds, they were given to you so you do not have to suffer. You are now at the point where things are starting to wake up, so naturally, you are hurting. If my memory serves me well, I stopped taking the pain meds three days after BMX and two days after the DIEP. You have gone through enough, please do not feel you have to ensure the pain. You'll know when you don't need them anymore.

    I hope the pain goes away and that you heal quickly, and that your husband feels better.

    Hugs to you!


    ETA: spelling errors

  • fivetimes
    fivetimes Member Posts: 51
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    ohh YAY!!! So happy for you that everything went well and you’re home sweet home!!!

    Yes!!! I found the all the medical staff much more proactive keeping in touch and checking in on me post surgery than ever before! Glad they’re checking in with you regularly!!! They must have learned how important it is for our recovery especially because of early releases now.


    How are you doing “milking” the drains? It was a little tricky for me

    Yeah my euphoria about having no pain was definitely a drug induced fantasy🙄 I’m glad you found relief with those meds!

    Hoping you and hubby are feeling better soon! Pamper yourself when ever you can, let friends and family help and most importantly - bitch when you need to!!! That’s all the wisdom I have about the horrible disease and I’m happy to share it with you🥰

    Get lots of rest!!! YOU ARE CANCER FREE!!! Yay🎉🎉🎉

  • gatsby14
    gatsby14 Member Posts: 1
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    I'm also undergoing a bilateral mastectomy next week. I thought I was ready for it, but I have been completely mentally wiped and emotionally exhausted so far this week. I began having small panic attacks and getting very anxious -- wondering about the pain and what I will look like afterwards. Also the realization that this is the last week I have with my real breasts. I think I should've taken time off before the surgery.

    I'm glad your post-surgical experience has been going well, @mavericksmom. I hope it continues!

  • fivetimes
    fivetimes Member Posts: 51
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    Hi gatsby14 sorry you have BC but glad your here to talk about it.

    I had a bilateral mastectomy 4 weeks ago and I won’t sugar coat the experience. It’s been a roller coaster of emotions.
    I do remember throwing away my favorite bra the day before surgery because it needed to be washed and I realized I wouldn’t need it the day after surgery. That was actually the first time I cried since my diagnosis. The realization of losing my breasts hit me hard but I had a good cry and then finished packing to go to the hospital

    Like you I had the panic attacks and anxiety leading up to the surgery. I thought the three months in between the diagnosis and the surgery were much harder than post surgery. All the worry of the unknown was so stressful.
    So you’re absolutely feeling what most of us on here felt in the lead up to the surgery😔


    Post surgery the pain hasn’t been that bad. Not nearly what you would think it would be. Tender, sore, the stretching exercises are not fun but they are helpful! overall it hasn’t been nearly as bad as I thought it would be.

    You’re almost there!! Take lots of deep breath‘s, a soak in the tub, a long walk, whatever helps you to relax - a big glass of wine or 2 or 3!!

    And you can always post here. somebody will usually be able to relate to what you’re going through! we’ll all be wishing the very best for your recovery !


  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom - I am so glad to hear that everything went well and staff is taking good care of you. Keep resting and caring for your self and get better quickly.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Hi all! When I left the hospital Wednesday evening, I had three bottles of pills from the hospital pharmacy. One was Tylenol. The only pain killer. All meds were explained to me. We had just turned onto the road the hospital is on when the nurse called. We had to turn around and go back because my plastic surgeon had pills for me too, Ocycodone. The nurse just ran it out to the car. I thought I had to pick one or the other. The next day I called the PS office and found out I am supposed to take both! Made huge difference in pain management!

    I have sporadic pain, from lymph node removal more than breast. Sharp pain!a10, but only lasts seconds. I know it will get better with time!

    Otherwise feeling good. Enjoying living in PJs! Later today I will get my first shower!

    Stripping the drain tubes has been fine, yep, there is a knack to it! Not sure what it says about me, but I actually like doing that! LOL.

    Amount in drains already down. See PA Wednesday and I know one drain will be taken out, maybe both.

    To those waiting for surgery, the time will pass quickly!
    Have a great weekend!

  • survivorpdx
    survivorpdx Member Posts: 1
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    Small world! My bilateral mastectomy was also this week. I too found the October timing ironic, but also somewhat comforting. I flew home from a work trip two weeks ago and Delta was giving out pick bandannas to Breast Cancer Survivors. I grabbed one without a second thought and tied it to my backpack to signal my membership in the club. Up until that moment, I had identified with a teal ribbon for Ovarian Cancer. Now in remission, it was time to embrace my new cancer and think pink. Surprisingly, no one said a word about it. This cracked me up since strangers had been approaching me the past four months due to my obvious hair loss from chemo. Turns out it's less about the color I was wearing and more about the badass confidence and positive attitude I was bringing. That got me through the first time and it will get me through again now. Also, ouch! Mastectomy and reconstruction hurt more than hysterectomy. Anybody else agree?

  • lw422
    lw422 Member Posts: 1,412
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    MavericksMom--so glad you're doing OK. I know you will be happy to see the last of those drains. Take it easy and here's hoping for rapid healing.

    Survivorpdx--welcome; sorry that you have to be here, though. I've not had a hysterectomy nor reconstruction for that matter; just a single mastectomy and lymph-node dissection. I don't want to go through ANY of it!! Hope you are healing well. You have a great attitude!

  • moderators
    moderators Posts: 8,290
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    Hi All, glad you found each other here! Love the great attitudes. We're here for you in any way! Medicating

  • nynyroc
    nynyroc Member Posts: 5
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    hello! I had nipple sparring bilateral mastectomy on 10/4. Surgery went well. I had had 5 nods removed. I'm so much pain but two drains are out now. Two more to go. I have a bunch of kids so not lifting and not using arm is almost impossible. Wishing everyone lots of positive vibes. We got this!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Help! Warning TMI post: Just had terrifying experience or not? I am home after my surgery, mastectomy with tissue expander,

    last Wednesday. Came home same day, doing well but took the oxycodone hcl 5 mg every 6 hours, skipped one or two pills first full 24 hours home thinking I was okay. I wasn’t so I went back on the prescribed oxycodone every 6 hrs as directed for a few days. Last one yesterday at 6:00 pm. Today still constipated so I took laxative this morning at lowest dose, one tab.

    Went to use bathroom a little while ago (around noon) but ended up using enema due to not being able to poop! Only able to get small amount of enema in, but it helped and I was able to finally go, albeit way bigger circumference than my normal size, presumably from being “backed up!” Felt instant relief after all was done!

    Then came the strange and scary thing that happened , as I cleaned myself up I realized I had hallucinations! Random things related to finally being able to poop,but definitely not real. It was the most strange experience! Terrifies me that I thought things happened that absolutely could not have happened while I was alone in the bathroom! My mind has been ok since, but that threw me for a loop! I never in all my surgery experiences had something like this happen! Again, I had not taken Oxycodone for about 12 hours prior to this.

    Has anyone else experienced anything like that? I am in my late 60’s so I am always sensitive to any mind issues seeming like Alzheimer’s! I am pretty sure it was drug induced but being someone who hates taking any kind of medication, but took these pain pills, this scared me

    I told my husband about it just in case it happens again! Kind of terrified when I should be feeling happy that I have been doing so well!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    I deleted my last post? A little too much information! LOL

    Doing much better today both physically and mentally!

    Wishing you happy healing pinkpower! I too haven’t been able to follow “reaching and lifting”guidelines but not due to kids, rather an older husband! I definitely don’t do anything that I think would harm me but I actually think reaching helps prevent shoulder issues!

  • maggiehopley
    maggiehopley Member Posts: 121
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    mabericksmom- I did a quick google and hallucinations are a side effect of painkillers that are underreported, so you are certainly not the only person with this experience.

    I had my one month post surgery check up with the breast surgeon's PA and they will not see me again until I have my port out, which will not be for 11 months or so. I feel like there should be a sooner visit. Doing my exercises and I can almost get my SLNB arm all the way over head.

    Friday I will finally meet the endocrinologist who will schedule my thyroid biopsy. Something happened when I had my ultrasound (before my mastectomy), and I have had a "lump" sensation in my throat ever since. It's driving me nuts, and I'm pretty sure it's going to be bad news. Trying not to get too worked up about it until I know for sure.

    On the plus side my first Kadcyla infusion was uneventful, with just some very minor constipation and reflux as side effects.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    maggie, thanks! Good to know about the drugs and hallucinations as I was really upset by what happened to my mind! In all of the surgeries I ever had with post op pain meds, I never experienced anything like this. Today was better, more normal. less pain, only on Tylenol the past two days. I feel much better in the morning and as day goes on, I feel worse. Completely normal. I am doing very well, in general.

    11 months of not seeing your breast surgeon seems way too long. I had a port put in when I had cancer in 2003, but it was only in for my chemo which was about 3 months or so. Not sure the "won't see you again" has anything to do with your port, more about the treatments you receive during that time. I assume you will be seen by a medical oncologist. I do know that I was told that I could choose who I wanted to follow up with, either my medical oncologist, or my breast surgeon, but didn't need to see both. Again, that was in 2003, but come to think of it, I only did follow up visits with my oncology NP for the three years after my surgery in 2019. That was due to the fact that my breast surgeon took a position with the medical school and was no longer seeing patients and I didn't want to see anyone new. You should be fine as long as someone is seeing you!

    The nodes my surgeon removed didn't drain into my arm, so no worries of lymphedema in that arm. Also, I can lift my arm above my head now. Location of nodes really makes a difference. I was told this might be the case prior to my surgery.

    I too will be glad for the drains to go! Hopeful at least one will be taken out on Wednesday. Life is definitely easier without dealing with drains! I have been sleeping on our power recliner since I came home from the hospital. Super comfortable, can recline and easy to get back up. Also, no worries of rolling on the drain tubes as I don't toss and turn on the recliner.

  • fivetimes
    fivetimes Member Posts: 51
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    hi mavericksmom! You sound like you’re doing really well!! Yay!! That’s awesome that your chair is so controlling sleep on!

    When you talked about the hallucinations it took me back to post lung surgery and I keep telling the docs they were giving me too many meds. I had to fight with them to stop putting them in my IV. 6 hours later the hallucinations stopped!! Thanks for sharing that - I always felt like a freak of nature when that happened 😂

    So happy everything is going well with your recovery!! Sending warm wishes !!

    Maryann

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Maryann, I am doing well, thanks for checking in!

    I guess perhaps I should not have removed my previous post. The mental stuff wasn't the part that I was uncomfortable with sharing. I probably should have edited it rather than push delete.

    Yes, this time the meds/drugs affected me differently than I ever remember prior to this, and I have had many involved surgeries where I was given heavy hitters for pain control. It scared me because it was totally unexpected, and when I was in my bathroom stripping the lines to the drains, it was just me in there! I was suddenly feeling a flood of information, that could not have possibly happened while I was in the bathroom alone! I didn't get hallucinations like "seeing spiders or snakes or anything frightening," that wasn't there, it was more like waking from a dream and remembering the dream. It hit me out of the blue that what I was thinking wasn't real!

    I wonder how many of us go through this and are too embarrassed or afraid to talk about it? Or perhaps don't know exactly how to put what we feel into words. I know as soon as it happened, I remembered it completely, but within a half hour my thoughts got fuzzier to the point that when I did write about it, it was extremely difficult to recall exactly what happen. What I experienced was fading from my memory. I wonder now if I did experience this before but wasn't aware of it enough at the time to tell anyone and then it simply faded from my memory without leaving any impression.

    I did tell my plastic surgeon about it and asked if it was due to the oxycodone, and he indicated it was. I am going to tell my breast surgeon as well. Also, hope the next surgery to remove expander and insert implant as well as revisions, etc., will not require such strong medications. I am not sure I needed them this time, but when pain hit, I was fearful of not "staying on top of the pain!"

    Do we have a thread on BCO about pain meds and their side effects? If not, there should be one! I might message moderators if there is no topic here.

    I had one drain removed yesterday and hope the other comes out on Tuesday. Now I am enjoying the down time, something I have not had since the last time I had surgery! Yikes!!!! I see both surgeons next week for follow up visits.

    Hope everyone is doing well and those due for surgery this week or in the weeks to come, feel welcome to share here!


  • fivetimes
    fivetimes Member Posts: 51
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    hi mavericksmom! Hope you’re continuing with a good recovery! Getting the drains out is a huge help. I hope that went well.
    How are you doing with sleeping? Are you back in your bed? I’ll never forget that particular joy of being able to lay down in bed again after a week of sleeping in a chair.

    Have you had your appointments with the two surgeons?
    how are your tissue expanders doing?I hope they’re not causing too much discomfort.

    Last week I had two appointments with plastic surgeons - One in Center City Philadelphia which was exhausting just to get to! Thank God for my husband driving me around ! and back to my breast surgeon for another Seroma draining so that was a long exhausting week stressful but necessary and I’m glad they’re all done

    The weeks when you have multiple appts can be energy suckers!!

    Yeah my hallucinations from the drugs were not like specific images it was like every time I closed my eyes I was looking through a kaleidoscope that just wouldn’t stop spinning and changing!
    it got to a point where I was scared to close my eyes. it was my nurse that I finally mentioned it and she is the one that told me it was from the drugs and she started contacting the doctor to stop the drugs.
    She said the nurses keep telling the doctors they’re giving the patients way too many narcotics during surgery but the doctors just don’t listen to them. She was a huge help

    and I think that’s a great idea about starting a new feed about the problems with narcotics during surgery. I know that they’re necessary but it’s helpful to know that other people experience it and forewarned is forearmed! if you feel that it’s starting to happen or you tell your family they can advocate for you with the doctors. Because I was certainly not in a position being on all those drugs to really understand what was happening And yes too embarrassed to say anything to anybody at first. So I think that’s a great idea!!!

    Hoping you’re doing well🙏 keep us posted on your progress!


  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Fivetimes, Hi! Glad I wasn't the only one who had pain medication issues. One drain came out at one week appointment with PS, the second was expected to come out a few days ago, but still too much output, so probably at my appointment next week. I am still sleeping in the recliner, mostly so I don't interfere with the drains in my sleep. I don't toss and turn in the recliner like I do in bed.

    So far expander is ok. He filled it a little during the surgery. So far no issues, which is amazing considering I fell late Sunday night, slipper caught the end of the area rug and down I went, right on my stomach and chest! I must have braced myself with my left arm because my left wrist and hand were bruised a little. Thankfully, other than being sore, I didn't hurt myself or my surgery site! Worst part was I couldn't get up, due to replaced shoulders and being so tired. I finally, after about a half hour on the floor, was able to get up. My husband went to a neighbor's house, she is an EMT, and she came over and checked me out. My ego was hurt more than anything else!

    You aren't kidding about the weeks with multiple appointments. Next week I am seeing a MO. I saw him prior to knowing I had cancer again. I think I was scheduled for my biopsy or just had that. Anyway, he went over everything with me and we agreed to meet again after I had surgical pathology back.

    I don't take an AI, don't like them, but I am never opposed to revisiting the issue as new things happen.

    My appointment yesterday with BS was great. The invasive part was tiny, (IDC) the large part only contained DCIS, so chance of spreading given the fact that I had a mastectomy, is very low. I am so happy about that. The only reason I am seeing the MO and revisiting the whole AI issue is due to my second time with cancer when I had the ILC, which tends to metastasize to many more locations than IDC. I like this MO very much. Like I said, doubt I will go back on an AI, but I do want his input.

    Hope things are going well with you! How are you doing? I went to FCCC in Philly in 2019. Were you at Jefferson or Penn? Both have excellent reputations and skilled doctors. I avoid the city at all costs now.

    Must end with GOOOO PHILLIES!!!! WHOOHOO!!!!

  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- I am sorry to here you fell. I hope you are doing better. I just got back from my cruise and that was a good time. Now it’s back to reality of surgery in 18 days. Yes. All the dr appt. I have 2 this week also. Thanks for lettting me know how your doing and some of the thinks to expect with pain meds.

    I was in Miami airport a long time yesterday and the ads kept popping up about breast cancer Awareness. Ugh it put me into the reality of it again and trying not to cry in the airport. I hope those feelings will go away.

    Hope all are doing well!!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    marge, soooo glad you had a great time on your cruise!!!!! Life is for living and you are doing that!

    I also hear you on Breast Cancer Awareness Month.............WE ARE VERY AWARE! I don't know if I am just getting used to it but it doesn't bother me nearly as much as it did the first few years after my first diagnosis.

    Reality is you have cancer, and you are being treated for it and it sucks! But nothing we do can change this for us. I lived with so many "could have, should have would have's" for years with my first and second diagnosis. I am over that now. It isn't easier this time, but not harder either.

    Having breast cancer three times doesn't make me an expert and it feel like I had breast cancer for the first time..........three times! Each cancer was different, each team was different, each hospital did things differently.

    A co-worker gave me the best advice this time, as I waited almost two months for my surgery day to arrive. She said, "picture yourself on the other side. Time goes so much faster after a surgery and soon you will be saying "I can't believe it's been two weeks since my surgery," then three weeks, then a month, etc!" She was absolutely right!

    Your time will come......and you will be on the other side of it too!


  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- thanks for the encouragement. Good idea about picturing the end of treatment. I need to think of being cancer free. I always like the phase from The movie is Shawshank redemption I used it when my mom was sick and when she passed. You need to get busy living or get busy dieing. Alway choice get busy living and have lived my life in that way. So I need to keep remembering that and do the things that make life enjoyable.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Feeling forgotten today. I thought my drain would come on this past Wednesday, but nope. PA told me to email her with drain outputs, that they would try to get it taken out before the weekend. Well, it is almost 2 PM on Friday, and still no word from PA so I am guessing I will go through the weekend with this stupid drain! Ugh!

    I know it probably is no big deal to them but having a drain in reminds me of the surgery, the surgery to come, and how messed up my life is right now.

    I saw my MO yesterday, he feels I should go back on Letrozole, so I agreed. Now I am doubting myself.........again! I think I just have WAY TOO MUCH TIME TO THINK!!!! I don't feel well so that doesn't help either. To top it off, when I picked up the prescription, I noticed it comes from the same company that recently recalled my blood pressure medication!

    When it rains, it pours: My local hospital is large, it has a huge parking lot and three parking garages. The one parking garage has structural issues so it is closed down indefinitely. That makes it hard for everyone to find parking! What a mess! To make matters worse, they are in the process of changing to a new computer system so there are 100 technicians in the hospital now working on that. 100 more people looking for a place to park! It could be worse.

    Sorry for the negativity! Hoping after I hit "submit" the phone will ring and the PA will tell me to come in and get the drain removed!

  • margecandoit
    margecandoit Member Posts: 150
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    maverickmom- I am so sorry your feeling forgotten. Hopefully the drain is coming out soon today! I had my dr appt today 10 days till Surgery. I had Covid last week though that would mess thinks up. So far if I can get healthy with the antibiotic all is good for surgery. Really ready for this to be out me. Mental game is getting really ruff. Hope your day is great and that drain has come out!!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Marge, es, I did get my drain out today!!! Not only that but I have an appointment Wednesday for my first expander fill.

    I get impatient and a bit panicked when I don’t have my next appointment scheduled. I am used to being in control and forget I need to trust those on my health care team. Many things that are a big deal to me are routine to them. Today I was reminded I can depend on them and they won’t let me “fall through the cracks!”

    Thanks for thinking of me! I hope you are feeling better and I am glad Covid won’t delay your surgery! I will be thinking of you!!!!

  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- yay!!! You got your drain out and fill coming on Wednesday. I know it so hard to stay patient. I go to a support group in town and a new lady who was just diagnose a couple days before our group meeting. Know she was having her surgery on Thursday before mine very happy for her but my mind is like ugh I been waiting so long. Why is this taking forever it’s been 7 months since I was diagnose I want this out of me. Have to keep look at the long game but sometime it’s hard to not get to feeling down or your being ignored or forgotten.

    I am starting to feel better hope i will be better soon. 9 days till surgery not like I am counting down. Hope your having a great day.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    marge, I completely understand how you feel about the newbie getting surgery before you! I am confused too, especially since you have been through so much! Do you have the same doctor?
    Nine days pre-surgery seems like it is sooo far away! But, the post surgery time flies by! It will happen! Hang in there!