Saturday, September 14, 2019

Things to Have for Double Mastectomy Recovery

I had to wait over a month for my surgery date. At first, I was disappointed because I urgently wanted the cancer out of me. After a while, though, I came to appreciate that I had time to come to terms with my surgery, time to celebrate my "old self" before my life would be turned upside down by cancer treatment, and time to prepare for my post-surgery recovery.

Now that I'm a few weeks out from my double mastectomy (no reconstruction) and bilateral sentinel lymph node biopsy, here's a list of things I've found helpful during my recovery period at home. (For the actual surgery, I made a separate post about Things to Bring to the Hospital for a Double Mastectomy.)
  • Pre-Prepared Foods - I made plenty of meals that could easily be frozen and re-heated so my family would have some go-to options when needed. If you have a group of local friends who are looking for ways to help you, consider asking them to start a meal train for you. 
  • Medication and Drain Log - Once home from the hospital, I recorded the date and time of each medication so I would know when I would be due for my next dose. I also kept track of how much I was draining, because the drains will be removed when the output decreases to a certain amount per day that your surgeon will determine. (My surgeon wanted 30 mL or less - 20 mL or less was even better - per drain per day for 2 consecutive days.)
  • Water bottle with straw lid - This item was essential. After the surgery, my throat was dry and scratchy for a while, and drinking lots of water is supposed to help promote healing. I kept my water bottle with me 24-7, and I drank water religiously for weeks, with a goal of 64-80 oz. of water a day. The straw is important because it allowed me to easily drink without spilling while lying down in bed.
  • 12" wedge pillow - Another essential item. Without it, it would have been impossible for me to gently lie myself down flat or get up from a flat position without using my arms. Even with the wedge pillow, my abs got a serious workout!
  • Extra pillows with pillow cases - I kept one pillow on each side of me, to prop up my arms while lying down. Sometimes I liked having an additional pillow under my knees, or another behind my head. I also had a small pillow to pad my chest, on which I could rest my cell phone while using it, so my arms wouldn't have to support the weight of the cell phone. (In the first few days, even the smallest items felt heavy.) Additional pillows of various sizes - or a variety of mid-sized stuffed animals! - helped to fill in the gaps, especially under my arms when sitting up in bed.
  • Husband pillow - For sitting up in bed. I placed the husband pillow on top of my wedge pillow, with large firm pillows behind the husband pillow for stability to support my back.
  • Underarm mastectomy pillows - Perfect for providing a gentle cushion for my very tender underarms. I slept with these every night for weeks. In the first few days after surgery, also great for holding cold packs in place near my underarms when lying down.
  • Tray - I kept a tray next to me in bed (propped up on a pillow) to hold everything I wanted within arm's reach, like my phone, the TV remote, and reading material.
  • Things to pass the time while in bed - Being mobile is good for healing, so you'll want to be up and about as much as you comfortably can, but you'll also need plenty of rest. Prepare a few things to help pass the time pleasantly, like access to Netflix, books, magazines, Sudoku puzzles, coloring books, etc. 
  • Mastectomy shirts, or any comfortable, loose-fitting button-down shirts - I had two mastectomy shirts, one more simple and one more stylish. My drains had loops that allowed them to be safety-pinned to any clothing, but still the drain pockets were useful for keeping the collection bulbs comfortably away from my skin. I also appreciated their snap buttons and/or velcro closures, which were easy to manage. (I honestly did not own any other short-sleeve, loose-fitting, button-down shirts anyway!) Even after the drains come out, I still needed button-down shirts until the range of motion of my arms improved enough for me to put on pullover shirts. This shirt, available in short and long sleeves, was widely recommended for its comfortable, loose-fitting fit, perfect for hiding drains. (I didn't get these for myself because I didn't know about them until well after my surgery.)
  • Electric toothbrush - I already had one so this wasn't a new purchase, but I was really glad to have it. Especially in the first couple days, manually brushing my teeth would have been a challenge, and I even had to hold the electric toothbrush with both hands.
  • Cleansing wipes - To freshen up before you're able to shower.
  • Dry shampoo - To freshen your hair before you're able to shower. (I had never used dry shampoo before, and I used it only once before showering, so I have no brand to recommend. I just picked one randomly and it got the job done.)  
  • Lanyard - When taking a shower with drains, I safety-pinned the drains to a lanyard around my neck, so the drains wouldn't dangle unsupported from the incisions. 
  • Shower chair - I did not have one, but I wish I had. I had a bit of an episode when I took my first post-op shower. I waited a few extra days after I was allowed to shower to mentally prepare for seeing my scars, but I should have also thought about the physical toll. A shower seat would allow you to sit during your shower, to help make sure you don't unintentionally overextend yourself.
  • Back scratcher - I also did not have one of these at first, but I wish I had! The limited range of motion of my arms meant I couldn't scratch my back, which was especially itchy under the surgical bra and compression band. Until I got a back scratcher, I had to ask my husband and kids to scratch my back for me, or else I made do with a wooden ruler!
  • Step stool - Once I start regaining range of motion in my arms, having a step stool in the kitchen really helped me to be more functional, allowing me to reach things just a little higher in the fridge or in the cabinets that I wouldn't have been able to reach otherwise. 
  • Mastectomy seat belt pillow - Any small, flat pillow will work to cushion your chest from the seat belt when you're in the passenger seat, but once you start driving, if your chest still hurts, a pillow that attaches to the seat belt would be more stable. The first kind I had didn't really sit in one place very well. A larger version stayed in position much better and spread the support across the whole chest area. (Incidentally, the smaller pillow became more useful when I eventually got my chemotherapy port; I actually positioned the small pillow on my shoulder, to lift the seat belt away from my port entirely.) 
  • Comfort items - Not only are you recovering from major surgery, but you're also dealing with losing your breasts. That's a big deal. You need to think of your emotional and psychological well-being as well as your physical well-being. Be sure to surround yourself with things that bring you comfort, whether it's your favorite childhood stuffed animal, a new super soft blanket, music by your favorite artists, scented candles, whatever works for you.
I had read about many of these things before my surgery, but I wasn't sure if they were needed, or if they were all just "nice to have" items. Truth be told, I felt uneasy about spending money on things that might only be used for a few weeks. If you're wondering what you could do to help out a friend who is scheduled for a double mastectomy, I think anything from the above list would be a welcome gift! In fact, I was lucky to have received some of these items from friends and family before I even knew I needed them.

I'll also mention that there were a few other things that were widely recommended that I did not end up using. For each item, I can definitely see their value, and if I had them, I probably would have used them. But in their absence, I still managed just fine.
  • Power recliner - I can see why a power recliner would be useful, because getting in and out of bed was not easy, even with the wedge pillow. However, a recliner isn't exactly the type of thing most people can just run out and buy or rent. My wedge pillow, along with other assorted pillows, were sufficient for me, though my abs definitely got a workout!
  • Whole body pillow - Like the kind you might use during pregnancy. Again, I can see why this item would be helpful; it would likely cut down on the number of extra pillows you need! But I didn't already have one from my pregnancies, and I had plenty of pillows of various shapes and sizes, so I didn't miss it.
  • Mastectomy pillow - This wrap-around pillow cushions both your chest and underarms, and I imagine it would be particularly useful while sitting. Without one, I got by with 2 underarm mastectomy pillows and a soft chest pillow. The chest pillow I only used when lying down.

3 comments:

  1. I'm sure this will be helpful for so many women(sadly...)!

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  2. I am week four after DMX and one sentinal lymph node removed. Things are looking good so far. I wish I had seen your list before my operation. It is a VERY accurate list of things to have. I have a wedge pillow but forgot to make use of it. I used my legs as a counter weight and built abs up quickly to get out of bed and out of the recliner. I can now get up from the recliner on the first try!

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    1. Yay! Sounds like you are making great progress!! Congratulations on getting through 4 weeks of recovery!! I hope you're starting to re-gain some range of motion and feeling more and more comfortable each day. Yes, those leg and ab muscles really get a workout! Hahaha. Thank you for dropping a note to let me know you were here!

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