I like to know what’s going on, or at least what’s going to happen. Prior to surgery I spent many hours trying to find tips and advice from those who have gone before me. There are not many articles written by those who have had a bilateral mastectomy on account of actually having the cancer. There are loads of stories written by those who have undergone a prophylactic mastectomy*. While I don’t discount their stories, nor do I ignore their advice, there is something different about having a mastectomy because you actually have cancer. The fate of the rest of my treatment, and frankly my life, depended on the pathology results of this surgery. Needless to say, I was a little nervous. I still am to some extent because we don’t have the 100% proof positive results back from pathology yet.
It is the 5th day past my surgery and here is what I have learned and my advice for any person visiting here to get a sense of what to expect.
Make yourself as fit as possible. You’ll read this everywhere. “Build up your core strength!” The extent of my “getting fit” prior to surgery was purchasing a new pair of running shoes. I don’t run. I walk… at a slow pace. However, I am not a large person. I am 5’4″ and roughly 140 lbs. I have curves and a little extra padding in places, but I’m by no means overweight. My reasoning for this bit of advice is for healing. When speaking with the plastic surgeon we were talking about the drains output. I said it wasn’t very much. He mentioned that is is partially because I am a small person. He said larger women or women with larger breasts often have much more drainage than do smaller women. If you have the time and ability, and are larger, lose some of it. It will help you lose the drains sooner, but also help with getting up and moving around.
Practice tasks without your arms. Try brushing your teeth with your elbows at your sides. Try reaching the top of your head or combing your hair without lifting your elbows above your head. Know where your limits are. Practice wiping with your opposite hand. That took some getting used to. It is one thing to not be able to use your arms, but you’ll also have to remember that during the practice, there’s no pain. I have moments where the muscles on once side don’t want to work on their own so I have to reach across to move my arm. I can comb my hair, but it does hurt.
Celebrate with whatever doesn’t taste disgusting. I haven’t started chemo yet so I assume this will apply much more then. However, I am a stress (not) eater so me and food are not bosom buddies. A regular question heard in our house is, “what doesn’t sound disgusting today?” If something sounds good to eat, eat it. Cookies for lunch? Go for it. Girl, you just had your boob(s) lopped off. You get to eat whatever the hell you like.
Before surgery, learn to love fiber. Sure have those cookies for lunch, but that dinner of asparagus, wild rice and sweet potatoes is going to be good for your digestive tract. You will need (and want) all the fiber you can get to get things moving. I’ve had 2 major abdominal surgeries. Trust me, you don’t want that kind of pain. I’d take a second mastectomy over another hysterectomy any day.
Invest in the following items:
Pillows. Lots and lots of pillows. Buy more pillows than you think you’ll need. I bought a wedge pillow from Amazon, 2 small throw pillows and 5 super cheap bed pillows from IKEA and have used my normal bed pillow and some of the extra pillows from my bed. You won’t be able to sleep lying down so you’ll need things to prop you up. My stack of pillows looks like this:
A Wedge Pillow. I bought this wedge pillow. It is comfortable to sleep on in it’s own right, but I didn’t get the best night’s sleep on it. The contraption you see above is how I sleep. The wedge provides a nice firm base to layer all of the other pillows.
A bed tray. I cannot lift my bed tray, but my husband sets it on the bed next to me. It gives me a spot to set the remotes, my phone, water, bell, etc.
A water cup with a straw. The first day home I needed water so my son brought me a pint glass with cling film over it and a straw stuck in it. Smart kid. However, the glass was almost too heavy. I sent my husband to Starbucks to pick up a travel tumbler with a straw. It’s my constant companion. DRINK WATER!!!
A scrubbie on a stick. I purchased this from Target. This way I can reach nearly every place and shower on my own. We also bought a cheap plastic patio chair I can sit in in the shower to shave my legs. Yes! I have shaved my legs.
Toilet assistance. One thing my husband really took into consideration was my independent toileting needs. I love him for that. He purchased a Zen Bidet and a Squatty Potty. Both are incredibly useful. I do have a few last remaining shreds of dignity I’d like to maintain.
A good companion. Let’s be honest. I have the single best husband in the entire world. You might think you’ve got a great husband, but I assure you, mine is way better. Sorry ladies. He has been the chief drain cleaner. He sat there and gave me support while I removed the bandages. He’s faxed paperwork. He makes all the meals. He cares for the child and me. He does so without ever complaining and continues to tell me he loves me. Beyond my husband there is another someone who won’t leave my side. This little dude has lived the past 5 days in the bed with me. He will continue to do so until I am completely healed.
I have many other bits of advice I could give. I may impart them as time goes on. I’m grateful to the women who did go before me and wrote about their experiences. I couldn’t have done this not knowing a little bit of what to expect. I hope if you found this place that you will find peace in your preparations. Remind yourself that this is only temporary. You are stronger than this.
*Many women are electing to have a mastectomy if they have tested positive for one of the gene mutations that may predispose them to breast cancer as an advance treatment.