YMMV, but something is going to bug the snot out of you – and be a huge relief when it’s over

We’ve talked about the fact that the breast cancer experience can vary significantly from person to person, not only in terms of treatments and outcomes and emotions, but in terms of how it specifically affects you. In talking to other survivors, I’ve realized that one thing is almost universal: there will be something particular about the process that you hate above everything else and there’s a good chance the end of it may feel like the beginning of the end of the ordeal. It might just be something that grates on your nerves or something extra painful or hard to deal with – either emotionally or physically. It might be something small or something major, something common or something obscure. But I assure you, there will be something.

A lot of people cite post-chemo nausea or exhaustion as the thing that caused them the most grief. For others, it’s being unable to sleep in their preferred position, sometimes for weeks. The nerve pains that show up a month or two post-surgery are a common worst-thing for people, too. Sometimes it’s something seemingly tiny that just aggravates you beyond all measure. I have one survivor friend who, despite a lot of intense treatment, will tell you the thing she absolutely detested above all others was the five days of self-administered anticoagulant shots once you go home from mastectomy. I get that one. I really do. Those little bastards sting. Ignoring the abscess and associated issues because it’s so rare, I’d probably cite those shots as my number two most hated part of recovery, both from the mastectomy and the DIEP (I didn’t need them for the other surgeries).

But, quirky as I tend to be, outside of one particular and super uncommon issue arising from the later infection, my most-hated aspect was one lots of people detest: those damn drains. If you’ve been reading this blog for any amount of time, you won’t be surprised to hear this. I’ve mentioned that my autism was not a fan because it doesn’t like stitches, or things protruding from my body, or icky things, and the drains are all of the above. I also talked about how seriously gross they are in another post. But I’ve only alluded in passing to the actual mechanics.

So let’s do a quick primer on how drains work, because they’re standard, not only for mastectomy, but an assortment of other surgeries as well. A drain is essentially a long tube that begins at your surgery site and ends in some sort of container outside your body. The purpose is right there in the name: to drain post-surgery fluid from the site. Wounds generally heal faster when excess fluid is removed and the risk of infection is lower as well. Plus, it’s a good way to gauge healing. As the wound heals, less fluid accumulates and it changes from red (mostly blood) to pink (a mix of blood and serous fluid) to eventually a light straw or almost clear color (serous fluid). On the off chance infection sets in, the surgeon can usually detect it by the presence of pus or cloudiness in the drain tubes (I say usually because what happened to me after the DIEP gave no outward signs, including in the drain, which is part of what made it such an extraordinarily uncommon situation). Also, though I’m speculating here because I’ve never seen it mentioned in the literature, I’d think it’s much more comfortable for the patient to have all that excess fluid removed than inside, putting pressure on your incisions and the rest of your body. So drains are great and important and a terrific medical advance, despite being a gross p.i.t.a.

Most commonly, in mastectomy (and I think most surgeries anymore, really), they use a Jackson-Pratt drain, which everyone just calls a JP drain. These drains work by suction. Each tube has a bulb about the size of an egg attached to the end where the fluid (etc) gathers. Each bulb can be opened at the top, either by popping a little tab or unscrewing a little cap. Twice a day, you empty out the fluid in each into a measuring cup and record the amount. After you empty, you squeeze out most of the air before capping the bulb again, which creates gentle suction to help the fluid drain and move through the tube. Sometimes the bulbs lose suction for whatever reason, so you have to open the cap, squeeze carefully so you don’t push out any liquid currently in it, then recap. I ended up having to have one of the bulbs replaced because it wouldn’t hold suction, though I think that was after the DIEP. In the early days of both surgeries, I had one chest drain that was putting out so much fluid, I couldn’t go a full twelve hours without emptying it, so I had to keep an eye on it and empty it in between and then do math at the twelve-hour mark.

In mastectomy, the tubes are typically pretty long because they exit your body from your sides and you want to have enough tubing to be able to empty them without pulling at the stitches at the exit points. You also have to do something with them when you move around because you can’t just let them hang. For one thing, they’d eventually pull out. Mostly, though, it would hurt, because they do get kind of heavy as they fill.

They do often come with alligator clips attached, so you can theoretically clip them to your waistband or shirt, but mine kept falling off my shirt collars. A lot of people stick them in pockets or attach them to a lanyard around the waist or neck. After mastectomy, I improvised by using an old round shoelace as a lanyard during showers and using either pockets or the waistband-clip method the rest of the time. When I was preparing for DIEP, which would send me home with not only two chest drains but also two abdominal drains, I picked up four little metal key loops, one to thread through the clip of each drain and then carried them clipped into a carabiner for easy management. So basically, I had a grape cluster of drains, usually hooked to the top buttonhole of my shirt or hanging like a heavy necklace from a neck cord, but it worked for me.

For whatever reason, juggling them in the shower irritated the heck out of me. You’re already dealing with exhaustion and limited range of motion, and now you have to work around these drain bulbs hanging from your neck or whatever. Before getting in the shower, you also have to put a gob of antiseptic goo over the exit sites to keep the water out. And then after you have to manage the drains while drying off and then dry the drains and the tubes themselves and then wipe off the remaining goo and hit the exits with alcohol and then put a small amount of antiseptic goo back on and then maybe or maybe not put a bandaid on, depending. If you have surgical tape covering your incisions, as I did, they encourage you to run a cool blow dryer over the tape to make sure it’s dry and you have to juggle the drains with that too. All told, it’s just a lot.

You’re also encouraged to “strip” or “milk” the tubes before you measure each output – or when you’re just sitting around doing nothing. This helps keep the suction up, helps prevent clogging, and generally speeds the process, thereby reducing the number of days you have the drains in. The length of time depends on the fluid output. When you get below a certain threshold, you can go in and have the drain pulled out. Sometimes one hangs around longer than the other(s) and sometimes not. Most surgeons have a time period after which they’ll pull them regardless. After mastectomy, both mine came out at once, right at two weeks. One side was still borderline in terms of output, but the fluid had been clear for some time so they went ahead and did it because most surgeons don’t seem to like leaving them in much past that if they can help it. After the DIEP, both chest and one abdominal drain came out at about the two week mark and the last one stayed a month.

One way or the other, my life for the first two weeks seemed to center on futzing around with those stupid (albeit important) drains. Every twelve hours the measuring process: strip one side, empty into the measuring cup, recharge and cap the drain, reclip it in whatever arrangement you’ve come up with, figure out the number which sometimes means holding the cup o’ gunk up to a light so you can see the markers, write down the number, go dump the cup’s contents in the toilet or sink, wash your hands, then repeat it all on the other side. Then check the exit sites for leaks or redness and dab on your antiseptic goo. By the time I got to the post-infection single abdominal drain, I had the process down to a science and could breeze right through it. But post-mastectomy, it was really hard. It felt like I was all the time somehow pulling on the anchor stitches or having to recharge a bulb or trying to clear a blockage. And just having those drains hanging around me made me feel icky – and also like I was never going to get better.

Removal is really simple; they cut and remove the couple of anchor stitches and then slowly pull the tube out through the exit site. The day I went in to have them removed, my then-partner went with me because some people have funny reactions to the process. Most report either no sensation at all or kind of a slithery feeling as the tubes slide across the inside of your chest and out. But occasionally people have pain and even more rarely, someone gets queasy or lightheaded. Mostly, according to my nurse, people freak themselves out with the anticipation and tense up. To head that off for me, my partner made a really exaggerated shocked face when the nurse started pulling – so exaggerated I knew he was playing – and I laughed. My tubes slid right out and I only felt a little bit of slither. My partner said he was really surprised by how long the tubes were, but otherwise it wasn’t a big deal.

My exit sites leaked like crazy for a couple of days, and one took a good week to stop weeping entirely and heal over, but having those drains out created a powerful psychological shift for me. Almost immediately, I felt better, more capable, and more healed. I felt like I could stand straighter, like my days were easier, and like I was actually getting back to normal. I did have a couple of days of confusion, where I reached for the now-gone drains when I prepared to stand up or forgot for a moment I didn’t need to maneuver them in the shower. It’s funny how just two weeks of dealing with them created such strong habits, but it did. And it’s funny how much getting them out shifted my mental state, but it did.

What I’ve realized is that, when you’re dealing with something major like cancer, everything gets magnified. Time gets distorted, your perceptions change, and the world just sort of enters a temporary, blurry wormhole. I think that’s why we tend to focus on one thing that feels extra hard for us and can hang so much of the experience on that thing, whatever it is. The upside is that, no matter what that thing is, it does eventually end. And then the thing you hate the most becomes the thing you’re proudest of persisting through.