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  • Emotionally Preparing for Surgery
  • Making the Choice
  • Preparing for Surgery
  • Surgery and Recovery
  • Things They Don't Tell You
  • Why Reconstruction Was Not for Me

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    Surgery and Recovery

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    Before Surgery

    If you are a believer in a higher power--use it! If not, consider becoming one. :-D I "turned it all over" to a "higher power." I had hundreds praying for me and I could feel it. I was completely relaxed and therefore didn't need many medications (no pre-op, no pain meds, etc.).

    On a physical level, drink tons of water beforehand (like days before). Use a stool softener with no laxative (just generic softener). Some medications can cause constipation, so this will help. Eat lightly for at least a day before surgery--no greasy foods, etc.

    Visit your mastectomy shop!!! Get to know what is available before surgery. My 10 year old daughter's best friend's mom owns the shop and I knew it well because I'd sold stuff for her on eBay. I was really happy to see the camisoles, bras, forms, etc. before. I didn't try them on, but I was familiar with them. I could have tried them on, but decided to do that afterwards. (Vicki)

    ~*~
    As someone living in a town where everyone seems to move away after college, I have but one local friend! In order to feel less alone, I used a website called CaringBridge.org to set up a "weblog/blog" for long-distance friends. You may find people asking the same questions over and over again, so only having to type information (prayer requests, updates, etc.) once can take a load off your mind.

    For my emotional well-being, I got out a plastic bin and started throwing fun things in it . . . things I could surround myself with in order to make recovery a little more pleasant. I was also advised by my mom, who had previously had this surgery, that I needed to stock up on comfy pajamas and tops, all in a button-up style. I worked to get the items together ahead of the scheduled surgery date, putting them in a bag with such things as a stuffed animal from a friend, a Bible, and Yes & Know book for the hospital stay. The only thing I ended up using in the hospital was the Yes & Know book!

    I also was able to find the hospital's website and check for an "e-mail the patient" page. I sent this to my frends. Many hospitals are adding this feature. They will print out and deliver e-mails that are sent to patients. I wasn't ready to look at them until the day after surgery, but it was nice to feel in touch with people in that manner. I couldn't hold a phone but was able to open envelopes. I'm not a phone person to begin with, but you might want to inform people that it will possibly be difficult for you to access the phone. For some reason (we never found out why!) my dad called my hospital room twice in a row, both times letting the phone ring "off the hook." My very confused nurse finally came into the room, looking right and left for the sound, as I informed her: "I think it's the phone." I was groggy from the anaesthesia, half asleep, my arms didn't work sufficiently, and the phone was nowhere near my bed. Had there been a bucket of water nearby, once the nurse handed me the phone, I might have placed it inside! ;) Anyway, I much preferred the letters, which were put away until I was awake and able to read them. (Joy)

    Visiting/Speaking with the Surgeon

    I put a Post-It note on my chest so that when he started surgery he saw it! Tell your surgeons many times that you never ever ever want reconstruction. If they think you might at some time, they'll still leave a bit of a pocket, like they did in my case (even though I kept telling him I didn't want reconstruction). I had to have those pockets removed a few months ago because they bugged me. (Vicki)

    ~*~
    While I probably dreaded it more than any other medical appointment, my visit with the surgeon was one of the easiest visits! He was very supportive of my decision not to have reconstruction, and said that choosing not to now would make no difference in the future, if I ever decided to. He also informed me how long I would be in the hospital (at least two nights).

    Since I knew nothing about the protocol of these types of visits, I didn't realize that going to the surgeon was, at least for me, the last step before surgery, other than a pre-testing at the hospital. The only thing that really came as much of a surprise was being sent into a room to schedule it! Be sure to take a little calendar or planner along if needed. (Joy)

    The Hospital Stay

    My surgery started around 9 am and I was up and ready to leave at 2:30 pm. Because I had no pre-op meds and needed no pain meds, I felt fantastic. I was 240 miles from home, so they were going to keep me overnight. I developed a hematoma due to the tightness of the tube top, so I stayed an extra night. Had I been in my own town, I could have gone home that night. (Vicki)

    ~*~
    The worst part for me was all of the prepping being done--it took over one-and-a-half hours! There seemed to be a never-ending line of people checking in on me or talking to me. During this time you may have a loved one with you. The last thing I remembered was having my hair put up in a shower-cap type thing. The next thing I remember is waking up in recovery to a screaming child and a man trying to sit up and ripping out all of his "connections." Boy, did I want out of recovery, but they were busy preparing a room for me and weren't able to move me, even after I was awake.

    I was wiped out all the first day, and found I didn't want lights or the television on. My mom kept begging me to have lights or the TV on, but it seemed like "too much input" after coming off anaesthesia.

    I was hooked up to up to seven things at a time, and had to ring for a nurse every time I had to use the restroom, which was a bit difficult.

    By the next day, I was raring to go--I was in an old, pristine-white type hospital, with the television off-center from the bed, so there was nothing to do but stare at a couple of white cupboard doors or sleep. The nurse wanted me to stay longer, but ultimately they did decide I could go in the early evening.

    The nurses were all very nice; I was just surprised at how little motivation I had to do anything other than lay in bed. It was also difficult to be wakened up constantly to have my vitals taken. I was raring to get outta there! (Joy)

    Drains

    The drains are an annoyance. They aren't painful, but they are disgusting if you think about them. So don't think about them. They serve a great function.

    Every doctor is different as to how long you keep the drains in. "My" guideline was when my output was less than 20-30 ccs a day, they could come out, I think. I wore a darling camisole from Amoena which had velcro pockets to hold the drains, so I was able to be out and about immediately.

    My doctor wanted me to shower immediately. I devised a very simple way to handle the drains during showers. I bought some elastic and tied it around my waist. Then I clipped the drains onto the elastic. That's it. If your drains don't have clips, use strong (big) safety pins. Diaper pins also work if you can find those.

    My drains stayed in about two weeks. (Vicki)

    ~*~
    Before surgery, I made drain belts (free pattern on site) to support the drains. The drains were the worst part, for me. The hospital was particular about how they wanted the drains situated, which was pinned to the inside of the hospital gown, with the hospital gown undone. They wouldn't let me use my drain belt or put a shirt on. This made their being able to access the drains difficult, because the gown opened in the back and kept wrapping around me, then they had to unpin the drains, which could pull. The worst part was using the restroom, because I had to hold the gown, tubes, and drains in my arms--which didn't work too well or want to hold much weight-wise post-surgery.

    Once I was close to being discharged, I put on the drain belt and immediately felt a bit better. However, the tubes were very huge (about twice the width of a power cord or straw) and the nurses said that from my pain, they were likely on a nerve (ouch!). From what I was told, they were to be milked and emptied three times a day, with the quantity of drainage carefully tabulated.

    I was forbidden from bathing while the drains were in. And I felt like I was forbidden from sleeping, too! I didn't have restrictions on sleeping position, but couldn't sleep and didn't feel comfortable with the idea of sleeping on my side. I tried to put throw pillows behind me to support my lower and upper back.

    When the drains were removed, I felt a lot more "normal." One of the first things I did was force my weak arms to wash my hair!!! (Joy)

    Pain Medication and Pain

    I never had nor needed one bit of pain medication. It simply didn't hurt. If I had node involvement, maybe it would have been a little more painful, but many people tell me that simple mastectomies with no reconstruction are not painful. (Vicki)

    ~*~
    I had pain medication once, perhaps the night after surgery. It was an extremely low dose that the nurse gave, and she said it would last three hours. I took some over-the-counter pain medication at home, but much less dosage than I was allowed to have. One of the anesthesiologists in the hospital was a conceited young fellow who kept insisting I was loaded on pain medications and there was no way I wasn't. I gave up trying to convince him otherwise. There's some pain, but (for me) it wasn't enough to need prescription-strength medication. (Joy)
    Complications

    I was up and out way too soon because I am a type-A personality. I did too much and developed an infection. I had no symptoms other than aching all over and a fever. I went to the ER (since my surgeon was 240 miles away) and a blood test indicated an elevated white blood count. The ER doc put me on IV antibiotics and hospitalized me "just in case." Within hours I was fine.

    Normally, I'd suggest staying down maybe for the week of your surgery. I had my surgery on a Monday, and was doing some light shopping by Wednesday. I was at Walmart a few days later. Since I felt fine, I saw no reason to stay down. That might have been a mistake. Maybe I should have taken some time off. :-) (Vicki)

    ~*~
    Carol, who was dealing with cancer and had her mastectomies on two separate occasions, says that she had to do exercises to get her arms moving well again, but that was mostly a temporary situation.

    A permanent complication is that she can't sense a very light touch on her back in two spots behind her chest (one on either side). She has also experienced an intermittent nerve itching there that can't be scratched for relief, due to the numbness. And, due to being a cancer survivor, both of her arms have developed lymphedema. But, she says, "I'm told most people rarely get lymphedema now."

    Plus, she adds, "I haven't experienced anything that's not 'liveable.'" (Carol)

    ~*~
    I developed seromas, which are collections of fluid near the surgery site. These are pretty apt to show up on ladies following mastectomy surgeries. While one of mine formed under the arm, the main reason I noticed it was that one morning, while looking at my incisions, I noticed my body had started to "develop" all over again--or so it appeared! They felt a bit "sloshy" when I walked. These have to be aspirated with a needle and syringe by a doctor, often more than once. Be sure to check your incisions daily and inform your doctor, because sometimes these can turn into a more serious complication. (Joy)
    Sleeping Position

    I hate sleeping on my back, but I did it while I had the drains in. (Vicki)

    ~*~
    Sleeping was the most difficult thing for me, and discouraging. I found myself waking up in pain, or coughing. With the drains in, I only felt comfortable laying on my back, even though a doctor said I could sleep in any position I wanted to (be sure to ask!). I used a lot of throw pillows, trying to stack them at an "incline." After having the drains removed, sleeping didn't go back to "things as usual," because I realized my arms and sides were too sore for me to sleep on my sides, and then I developed seromas. The nice thing is, sleeping gets a little easier each night. (Joy)
    Wearing Prostheses

    Normally, they want you to wait six weeks before wearing prostheses. However, I was still a bit swollen (though I didn't know it). I bought my prostheses then and they ended up being too small. Fortunately, I go to a wonderful mastectomy shop and they let me get bigger ones later. (Vicki)

    Going Back to "Life as Usual"

    I was back to my normal life within days, but I did no lifting of anything heavier than a small book for at least six weeks. I mean, why do it? (Vicki)

    ~*~
    I had most of my restrictions lifted around a week after surgery, other than using deodorant, of all things! My body would "complain" about certain movements or weights, but I could lift my large cat after about a week. Be sure to ask your doctor about restrictions. Be very clear on all points, and follow what s/he says. It will be different for all people. For example, my range of motion in my arms was almost back to a "normal" person's about two weeks after surgery, but I was double-jointed before surgery, so I wasn't back to normal, even though it appeared so.

    I took a semester off school in order to have plenty of time to recover. (Joy)

    Final Words

    Email me (foghornbooks @ gmail . com. (remove spaces)) and I'll be your personal cheerleader. I had such a wonderful experience that I love sharing about it. (Vicki)

    Note

    The previous article is about people's personal experiences, and will vary. Please discuss everything with your doctor, because information here may be inaccurate or out-of-date. Nothing should be construed as medical advice. Your experience is also appreciated!

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