If I Knew Then

No matter how much research you’ve done into mastectomies and reconstructions, and I’ve been doing it for seven years now, there’s a lot you can’t possibly know until you are in the actual situation. My surgery was on Monday; it took almost 14 hours, a complication of my being overweight and large-breasted. The full pathology report came back and it was all negative for invasive cancer – no lymph involvement, no spreading. I won’t need any treatment. While I know anyone reading this is looking for a recap of what went down the last five days, I can’t really repeat it in exact detail because much of it is blurry. But I can tell you some things I wish I’d known before having this done; these are in no particular order. There are no graphic pictures, but some gross detail and a lot of bathroom talk.

1) I wish I’d known that there would be no sleeping in the hospital. The nurses come in every hour on the hour to check the doppler signals of the blood vessels and arteries that have been reconnected in the breasts. That takes about ten minutes and basically involves being poked a bit and then listening to the loud wooshing sounds going on in there; it also involves any screeching feedback sounds that the machine makes. There were also nurse checks for vital signs. Every morning, the residents came to check on things – two from the plastic surgeon and three from the breast surgeon; the plastic surgeon residents come back in the afternoon. Then the PT woman would come to take me for a walk and show me some exercises. There are neck/shoulder exercises I’m expected to do three times a day as well as breathing exercises I had to do in the hospital to recover from the long surgery and tube that pushed air into my lungs. At the end of the second day, they removed the catheter, which meant that any time I had the slightest urge to go to the bathroom, a 15 minute ordeal ensued of getting unhooked, shlepping into the bathroom, collecting handfuls of tubes, and then putting it all together again. Basically, although everyone kept telling me to get lots of rest, they made it nearly impossible for me to do so.

2) I did not know that I would need my thigh muscles so much. As a girl who, I admit, sits on public toilet seats, I don’t get a lot of exercise in my thighs. Even swimming, lately I’d been focussing on upper body and core. But once you have the abdominal surgery, you will be forced to walk in a hunched over position that requires great strength in your thighs and back. Get yourself a thighmaster and start using it well before the surgery. My back in particular is weaker than I thought – after only minutes of waking hunched over, my back gives out, begins to spasm, my abdomen seizes, and the whole process is paralyzed.

3) Bring your own meds, particularly for headaches and nausea if you have meds for these things. I found that everything in the hospital made me nauseous – the smell of the nurses hand soap and perfume, the sound of the doppler machine, the feeling when the residents would squeeze my new breasts (even though I couldn’t really feel anything). And, I had a headache most of the time, which was probably caused my some combination of the pain meds, the blood thinners, the restlessness, and being poked and prodded a hundred times a day. Luckily, I was able to get imitrex which did usually work.

4) Don’t bother packing clothes. I didn’t wear underwear the entire time, and my hospital gown was pulled down more often than it was snapped up. I was basically naked and on display for five days. I don’t know why I packed a week’s worth of socks.

5) Bring a caretaker if you can. I could not have been more lucky that my mom came with me – she stayed in that hospital from the moment I checked in until the minute I was discharged. She now knows more about nursing tissue transfer patients than some of the nurses did! She took care of everything for me during long waits after calling for a nurse. My mom held my surgical drains in front of me while I pooped and while I changed a tampon. She did not blink an eye at any request no matter how gross it was. And it was really gross.

6) I did not realize how much of a fidgeter I am. At this point, I’m basically stuck in one of two positions, laying down with my back elevated, or sitting straight up in a chair. Normally I am one of those people who sits on my legs, who curls myself up on myself, sits cross legged at my desk, who sleeps on my side and switches frequently. It is hard to be in only two positions per day. I actually look forward to trips to the bathroom – it give me a chance to break up the monotony a bit. In fact, this evening I have been up most of the night (after sleeping from about 9pm-2:00am) just getting in and out of bed. Even though getting up is hard, it sometimes feels better than just lying there.

7) This is something I read about in many places, so I did know about it before the surgery, but the drains are completely frustrating and annoying. They’re a huge pain in the ass. Do yourself a favor and buy a belt with pockets that is made for holding surgical drains; this is the one I got and it has worked out well since coming home. You will be glad you did because holding them up while you try to pee when you don’t have any core ability is a challenge. There have been amazing medical advances – these things are an antiquated and tedious process, and I can’t believe no one has figured out a better system.

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3 comments

  1. I remember laying in my bed and a nurse, whose first language was not English, asked my husband, “Did she make the poo?” I said, “Did she really just ask you that?” As you know, one thing you don’t want to do too much of in this condition, is laugh. Congrats on not needing treatment!!!!

    1. Laughing is awful, although slightly better than coughing. I’ve basically banned the hubs from talking around me since everything he says makes me laugh.

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