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What’s It Really Like Waking Up from a Bilateral Mastectomy?

This post is an excerpt from my memoir, Cancer Was Not a Gift & It Didn’t Make Me a Better Person:  A memoir about cancer as I know it

Before my bilateral mastectomy, I was busy Googling away and found little about what it was really like waking up from a mastectomy. I mean, the actual waking up part. I wanted to know everything. Not everyone does and that’s fine too. But if you do, well, this post is for you.

Of course, everyone is different, and I can only share about my experience. If you have had a mastectomy, I hope you’ll share about yours with a comment below.

Getting this post ready reminded me how difficult this experience is for partners and other loved ones too. If you are/were coming at this experience from that vantage point, you’re invited to share too.

What’s it really like waking up from a bilateral mastectomy? 

(This excerpt contains a few minor edits to better format for a blog post.)

Waking Up (from my bilateral mastectomy)

Cancer Was Not a Gift & It Didn’t Make Me a Better Person – Chapter 17

When I wake up in the recovery room, the first thing I notice is the large clock on the wall telling me it’s a bit after 2 p.m. I’m surprised to find myself more mentally alert than I thought I would be, or at least I think I am. I hear nurses talking in hushed voices and watch them hovering nearby. I am relieved I have no pain, at least not yet.

I feel like a spy peering out from my secret hiding place or an observer concealed under a fuzzy veil, quietly gathering information about someone else’s life.

“He went for four lymph nodes,” I incorrectly hear one of them say (it was actually fourteen).

Immediately, I know they were not all clear. I can’t hear many other details, the voices sound too distant and muffled, but I listen intently as if I am decoding safely guarded, classified secrets.

As I continue to wake up, I am acutely aware I have been lying in the same position for over six hours, and the idea of ever moving again feels like I might as well be trying to reach the moon. Eventually, after close to two hours, I am pronounced ready by whoever decides such things, to be moved to my hospital room where David, Peter and Aaron wait for me. Lindsay will come later tonight.

Still flat on my back, I am wheeled down numerous meandering hallways and finally end up in my assigned room. I brace myself when it’s time for them to transfer me to my hospital bed.

“We’ll count to three and then you try to lift your head,” someone instructs.

I’m not sure if I am capable of blinking my eyelids much less lifting my head, but they count anyway, and I guess I do, because miraculously I am lifted via a blanket and placed into the hospital bed. Unfortunately, we must count and “lift off” once more for final adjustments in the bed.

Finally someone, certainly not me, determines I look comfortable enough, and we all relax a bit.

Next I see David, Peter and Aaron standing over me with worried expressions on their faces. They continue looking down at me, as if waiting for me to say something profound. I say nothing.

“You look good,” Peter says.

“Yes, you do,” echos Aaron.

I know they aren’t telling the truth, but who cares. It must be hard to see your mother at such a moment.

Peter and Aaron leave almost right away so Peter will not be late for work at his summer job. Aaron will come back later with Lindsay, who decided to drive down from Fargo. I’m thankful for my three children who have become such capable, loving and caring young adults.

I also feel badly they have become so familiar with cancer.

Facing me must be hard for David, and I feel badly about this. He doesn’t get to tell me all my lymph nodes were clear. That was supposed to be our secret code for things being okay when I woke up. If I heard the words “all clear,” we could celebrate. If I heard the words “all clear,” I would not need chemo.

I don’t get to hear them. We are both silent. Actually, I am too sick to think about much else anyway.

Coming out of anesthesia completely is like trying to free myself from quicksand. My mind feels clear and fairly alert, but my body seems stuck in slow motion, and I am unable to speed it up.

Every movement I want to make from the simple task of turning in bed, to pushing the buttons on my remote, to the more monumental feat of actually sitting up and getting out of bed, feels mechanical, slow and difficult. When I do finally manage to sit upright in order to make my way to the bathroom, I move slowly, like a woman decades older, and I am overcome with nausea.

“It’s okay,” David says.

He gently rubs my back as I throw up into the long, narrow, plastic blue bag.

Eventually, I make my way to the bathroom accompanied by a nurse and attached to my pain-relief-drug-filled IV bag, which is in turn attached to a cart on wheels. The nurse has instructed me that I am allowed to push a button on the machine every so often for an extra dose.

I push it.

There hardly seems to be room for all three of us in the tiny bathroom with its annoying fluorescent light. Why do they always buzz? I glance at my pale reflection in the mirror, but I don’t look for long. I don’t want my gaze to make its way to my chest, not yet.

When you are recovering from surgery, you no longer take for granted simple bodily functions such as rising out of bed, putting one foot in front of the other, brushing your hair or teeth, emptying your bladder or even breathing. Such simple motions you normally do every day with little notice or appreciation now suddenly feel like the most valuable skills in the world.

Aaron returns this evening with Lindsay. I’m almost relieved Peter is at work and doesn’t have to be here. We spend the evening just being together. I wonder what they are really thinking about, especially Lindsay. I remember thoughts I had while observing Mother. They aren’t thoughts I wanted her to have, at least not yet.

It seems unbelievable I have cancer too.

However, I have just come through a successful bilateral mastectomy. My case will turn out differently.

This is my new mantra.

The four of us sit around doing little, but accomplishing much, simply by spending time together. Later after they leave, I collapse into bed slowly; it is as much a mental collapse as a physical one.

June 2 is over. Thank God. My bilateral mastectomy is done.

I guess I am now officially a survivor, or that’s what I’m told anyway. I have no idea what the hell this means. I do not feel like one.

Regardless, for whatever reason this situation has been assigned to me; there is no turning back.

I must look forward, just not tonight.

Read more in my memoir.

Stained-glass artwork in images by Laurie Bieze

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Have you had a mastectomy or any other type of surgery and wondered what waking up from it would be like?

If applicable, what do you remember about waking up from your surgery?

If you are/were a partner or other loved one what was the experience like for you?

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What's It Really Like Waking Up from a Bilateral Mastectomy?

15 thoughts to “What’s It Really Like Waking Up from a Bilateral Mastectomy?”

  1. I didn’t wake up (or have recall) until early the next morning & I was in my hospital room.
    I heard my sister say to me.” You are going to be alright, They got it all”.
    Only one problem with that… she had died of her cancer 7 months earlier.

    1. April, Your comment says a lot. I am sorry about your sister. Thank you for reading and taking time to comment about your experience.

  2. I remember being surprised it was over and I didn’t remember anything. I didn’t want to wake up though. It was so comfortable to not be awake. But a nurse, (I guess), is talking to me in a loud voice, calling my by name, and asking me questions, or maybe just telling me to wake up? I can’t believe someone is so rude to want me to make sense of words, and answer back?!? By talking?!?! Just let me sleep!!!! But she is irritatingly persistent. So as my consciousness reluctantly ascends from peaceful sleep into the pain and confusion that is my reality, my mom is there, asking me questions too. And I feel sick. But I guess they were waiting for me to tell them, so I get some anti-nausea med squirted into my IV tubing. And I am crying, and my mom calls my husband to tell him that I want to see him. I told him to just work a normal day, there wasn’t anything he could do. It’s better to stay busy than just wait in the waiting room for 6 hours. Right? I can open my eyes. That doesn’t hurt. But move my head a millimeter, and PAIN. It hurts to breathe. I soon learn it hurts less to let my stomach move to breathe, and keep the chest still. I am moved to a hospital room for overnight. and all my energy is devoted to preventing the pain from increasing.. by not moving at all. They want to raise the head of the bed up. I can only stand about an inch at a time before I am crying out. so they stop. for a few seconds. then another inch. I ask them to just stop. We are going to try to control the pain with Tylenol and Motrin, because the breast surgeon told me in pre-op that the use of narcotic pain meds post-op has been led to increased risk of recurrence. The nurse comes in and says she can’t get the pain meds out of the dispenser. I can’t believe this is happening. when she goes out, I tell mom to get me 2 tylenol and 4 ibuprofen out of my bag and give it to me. It is nice to find I can move my hands without pain. and wrists, and elbows. but I have to keep the elbows right next to my side, and not move away. The plastic surgeon comes in to check on me, and convinces me it’s ok to have some narcotic pain meds. I don’t care about recurrence, I want pain relief or I just want to die. So that gets squirted into my IV. I am worried it is going to make me sick, but it doesn’t. The pain vanishes, and I try to sleep. That was three summers ago. I don’t want to remember the date. And lucky me, I got some brain damage from the chemo, so now I forget a lot of things, I hope to be able to forget all about my bilateral mastectomy, with the placeholders put in, (I forget what they are called, but they were so uncomfortable, I couldn’t wait to get them out, I wish I never bothered with them in the first place, they contributed to so much more pain and discomfort, and it was OPTIONAL!!!! I just didn’t know.), and all the rest. I just want it to fade away and leave me alone.

    1. Jennifer, Sounds like you experienced way too much pain. It seems your meds might have handled better by your team. Thank you for sharing about your experience. Hope you’re doing well today.

  3. My bilateral was Dec 2, 2016. I remember waking up, sort of, after 6 hrs of surgery and just wanting to go on sleeping. My husband and daughter were there. I kept telling them I couldn’t see anything and my daughter would patiently tell me that I could if only I would open my eyes! I insisted they were open! I knew my daughter had gone Christmas shopping for her 2 boys while I was in surgery and I was trying to form the words to ask what she bought. She said something about chicken at Costco and I told her the boys would not want chicken for Christmas! It was just too hard to make sense of anything. I think I was actually surprised to wake up…I was really afraid I wouldn’t. The rest of that day was filled with migraines and genuine grief over the loss of my breasts. The thought of them being dissected and disposed of caused me a bit of a breakdown. I spent the next 5 days in the hospital due to a low oxygen level. I wouldn’t wish those 5 days on anyone. Life goes on though, and each day gets a little better.

    1. Donna, I can’t imagine having this surgery during the holidays, but then of course, it’s not like there is a good time. There is a lot of grieving that goes on, and I don’t think women are properly prepared for this. I know I wasn’t. Sacrificing body parts is always hard, and it’s not something you just forget about. In fact, often the reality of it all hits later on. Thank you for sharing so candidly about your experience.

  4. Hi Nancy,

    It’s very emotional needless to say to wake up from any surgery, let alone whenever cancer is involved. You’ve been through hell and back. When I got my mastectomy, it was prophylactic, but of course, cancer-related. I woke up ironically joking with the doc and nurses, who loved my “gusto” only to have a mental breakdown a few hours later in ICU. My moods were extremes. Extreme relief it was over, extreme fear, extreme sadness. I think I would like to write about a post on this sometime soon. It’s an important topic.

    1. Beth, Yep. Emotional. That’s what it is. Interesting that you woke up joking around and then later had a breakdown. But not surprising. Mood extremes are probably pretty common. I hope you do write that post. I sure wanted to read what waking up from a mastectomy was like before mine. Thank you for reading and commenting.

  5. I had a single mastectomy. It felt as if i had walked into a steaming locomotive. By day 3 j could sleep on my side.
    Yes, it was gone. It was my choice; no chemo; no radiation; no reconstruction. I was pleased it was gone. I had serious fluid build up even though having drains in for 6 days. Actually very messy; worse than childbirth.
    Today I am so grateful I am cancer free; so grateful that it was OUTSIDE my body.
    I am a cancer survivor with a missing in action boob.

    1. Do you regret your decision to not reconstruct? I’m doing chemo now and leaning more towards not doing reconstruction. I’m 62 yrs old and just want To put this behind me without adding more pain. My best to you!!

  6. I had two lumpectomies. The first I was in twilight sleep . . . and I felt it all. Before the second lumpectomy, they put in my port. I asked to be knocked out but the day of the procedure felt like I was getting a cold, so more twilight, more pain, AND I’ll never forget hearing the nurses, docs, and whoever else was int he room laughing, loudly. I was so mad. Finally, for the second lumpectomy, I got knocked out. It’s not as heavy a surgery as a masectomy so I only remember being very groggy. When I had a craniotomy . . . wow, that was as you describe. Dave was so worried, he climbed the hospital stairs over and over and over again. And even though the test in the OR said it was NOT cancer, the docs wanted to do more tests of the tumor. My kids were so angry they were throwing things, slamming doors, very upset. (They cannot remember their reactions, but I do.)I was never in a lot of pain, but my body took forever to work. i called it Rebooting because I felt like a computer that had been shut off, turned on again, and restarting each program. Yuck.

    1. Linda, Oh my gosh, that craniotomy sounds so scary. Rebooting sounds like the perfect way to describe that post-op experience. How long did it take for your body to “start working” again? You’ve been through so much. And yeah, yuck. Thanks for sharing.

      1. It was a year. I had to go back to work after six weeks because although I’d taken a medical leave of 12 weeks, it took 6 just to get the MRI to diagnosis that tumor. Going back after 6 weeks of rehab, not being fully back together was the worst part. But I’m done with that. Onward and Upward!

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