In the year since my double mastectomy, I’ve had some very close friends and countless other women reach out to me directly or through someone else with questions about an upcoming mastectomy. It’s usually a text that goes something like this: “…scheduled for a mastectomy…feeling overwhelmed…what can I do…do you have any advice?”
There is so much information available for women with breast cancer or women with breast cancer genetics. Maybe that’s a problem. Information overload. We’re overwhelmed. We just need to talk to someone who’s been through it. We’re confused. We’re alone in a very crowded room. We need a sister.
Having a mastectomy, single or double, with cancer or prophylactically, is a journey full of unknowns surrounded by information. It’s hard to sift through it when you’re distracted by your own mortality or the thought of your body’s transformation. We are scared or ready, resigned, angry, frustrated, or any and all of the wide array of emotions that come along with this surgical prescription.
To the friends who text me for advice for their friend or family member, I send this:
When you know or love someone who is about to have a mastectomy…don’t talk about the “up side” of getting “new boobs” unless she brings that up. And even if she does bring that up, don’t talk about it, especially not the size. What’s good to talk about? First off, maybe she just needs you to listen. Then, ask her if she wants to laugh. The conversation I loved was when my friend shared about her recent herpes outbreak. Those gory, horrific details made me feel a lot better about my own situation. #usecondoms
And then, once they are prepared to offer the right kind of support for their friend, I let them know they can feel free to pass this along:
Your surgery will not look or act or feel like anyone else’s. You’re a unique body, like a snowflake, but here are the things that made all the difference for me.
The first time I was diagnosed with early stage breast cancer, my doctors and nurses and friends told me to stay off the internet. I didn’t listen. You won’t either. Go straight to www.breastcancer.org and don’t go anywhere else. They are smart and pragmatic. You have enough emotions for everyone. Stay off the forums. If you need someone to talk to, call your doctor, nurse, friend, coworker, family member, dog, or cat. If you call upon internet chat rooms, you might get the opposite of hope.
On the day after my diagnosis, I typed the word “mastectomy” into the search bar. Being a visual person, I needed to see it to understand it. Everyone warned against this and, yes there were some difficult images, but when I Googled “mastectomy” I also found hope. I found David Allen. David is an artist who has lately devoted his career to mastectomy scar tattoos. And, these aren’t the fake nipples your plastic surgeon will tell you about. Why does nipple feel like a bad word, like I should whisper it? David’s work is art. It’s exhibited in museums. If you’re having reconstruction, your plastic surgeon probably won’t mention this option during your consult. When I saw David Allen’s work, I wanted it. And it only came with a mastectomy. “If I’m having a mastectomy, at least it can be the first step towards something beautiful.” (UPDATE: In January of 2020, I travelled with my husband to get tattoos from David Allen. It was the most life-affirming thing I’ve ever done. More on that in another story.)
Your hope might look different than mine. It might look like your child. It might look like your partner. It might look like your career or your pets, your dance class, your art, your marathon, or your masterpiece. Mine looked like my future tattoos. Find and focus on your hope.
2. Zip up sweatshirts or front opening tops of any kind.
For a short period of time — I’m not giving you any timelines here. You are a snowflake. Your body is on it’s own schedule. For a short period of time, it will be difficult to lift your arms above your head. And you’ll probably have some drainage tubes with suction balls at the end coming out of the sides of your body. It feels weird, but it’s normal. Okay, yes, it’s uncomfortable, but I know you can do it. Lightweight zip up sweatshirts were my best friend. My favorite one was from the Goofy Foot Surf School because every time I put it on, I remembered the surfing lessons I took with my husband and daughters and how the instructor said I was the only one in our family following directions. I took that to mean that I was the best. I can surf (with an instructor). I can do this.
Button down pajama tops were nice and loose fitting button down shirts were great too, but nothing was as good as that Goofy Foot sweatshirt. Find your favorite front-opening top and bring it to the hospital so you can wear it home.
4. Latex-free sterile gloves.
Those drains I mentioned, they have to be emptied. It’s totally possible to do it yourself and your nurses will turn you into a professional tube drainer before you leave the hospital. They’ll teach you all the intricacies and cheer for you when you do it the first time. Ask questions if you’re confused. Speak up. They’ll probably want you to measure and keep track of how much fluid is leaving your body. If you have a partner or caregiver, this is an awesome job to assign to them. They want to feel useful. They want to help you. Let them. Even squeamish friends and family members can handle this. The hospital sent us home with a full box of sterile gloves in my husband’s size. If they offer you this, take it. You can use the leftovers for all sorts of household chores later. They are especially helpful when de-seeding jalapeño peppers for guacamole. Just don’t rub your eyes until you take them off.
My surgeon got creative and attached safety pins to the tabs on the suction balls at the end of each drain. Then, I could pin the suction balls to the inside of my shirt or sweatshirt. Belts, fanny packs, bras with hooks, tennis shirts with pockets, and all sorts of gadgets are for sale to help with this. Safety pins worked great for me.
3. Body wipes.
Your surgeon(s) won’t let you shower for a little bit. I won’t lie to you. It’s awful. It might be one of the worst parts. BUT…you can feel amazingly refreshed with body wipes. I didn’t even know these existed and now feel like a totally evolved human. There are so many brands on the market … different fragrances, fragrance-free for sensitive skin, biodegradable, natural, truly something for everyone.
BUT…DO NOT purchase this essential item before your surgery. I know, it seems counter-intuitive. You want to be prepared. Prior to your surgery date, scope out which one you want from your local, family-owned market or put these on hold in your Amazon cart. Be prepared, but do not purchase. When you’re being discharged from the hospital ask your nurse for a few packs. Actually, you probably won’t even need to ask. Nurses love to load you up with goodies and wheel you out the door ready to open your own pharmacy. Let them. They gave me so many, it’s now been a full year since my mastectomy and I still have five packs stashed away just in case. Great for camping. And, if they are stingy with the wipes when discharging you or don’t have the kind you want, hit “Place Your Order” on that Amazon cart, or call one of your friends who said “let me know how I can help” and send them to the store to pick up your preferred brand.
4. Dry Shampoo.
See above re: they won’t let you shower. Dry Shampoo is awesome, for a couple days. And then you have Dry Shampoo head which can get really itchy. If you have greasy hair like I do and a partner or friend willing to wash your hair for you in the sink, you will feel like a new woman. You can lean forward over the edge of the sink to put your head under the faucet. Or they can pour the water over your head while you’re leaning forward. Put a towel around your shoulders. Schedule this person in advance, you can always cancel if you’re not up for it.
5. A lanyard with a clip on the end.
Once the doctor cleared me to shower, I was thrilled, but then quickly realized that I had drainage tubes hanging out of the sides of my body. Letting them dangle was not a comfortable option for me. My first shower post-surgery, included my husband standing in the shower with me holding the drains so I could have my hands free. My most genius idea (where is the patent application?) was to borrow a lanyard from my daughter and safety pin the drains to the lanyard so I could shower on my own hands-free. It felt like heaven. My lanyard said Mizuno Volleyball on it which gave me another sense of accomplishment. All those years of traveling with my girls to club volleyball tournaments were paying off. Most expensive lanyard ever, but a long, hot shower hands free? That’s worth every penny. I wish it had been adjustable. My future design patent will be for an adjustable lanyard. But wait!! Someone beat me to it. Creative minds think alike…you can now purchase a lanyard for this exact purpose on Etsy!
You might be prescribed antibiotics after your surgery. You know what they can do to you. Protecting your gut with probiotics just means swallowing one more pill. Your intestinal microbes will thank you. I love the kind that you don’t have to keep in the fridge, but there are lots of options out in the world. These can be expensive. If money is tight right now, when someone sends you a note saying “can I get you anything?” respond with “Yes! I’d love some probiotics for my gut. Thank you so much!” They will be happy to be part of your healing.
7. Monistat (or similar).
Ditto above with the antibiotics. If your partner is a man, it will be hard for him to buy the correct yeast infection cream. And it will be scary for him. If your partner is a woman, you’re fine. If you want to be prepared, these have a long shelf life and if you don’t need it after your mastectomy, you may need it for something else later, especially if you’re a lifeguard or teach swimming lessons. Good to have on hand or this is another great job to delegate to a woman who wants you to “let me know how I can support you.”
8. Prune juice.
Painkillers can do a number on your stomach. If you’ve had surgery before, you know what I mean. You may not be able to poop. There is a lot of discussion in the world about the use of painkillers and I’m not going to go into that here, but I will remind you that you are a unique snowflake. Stay on top of the pain and that means something different for everyone. In my opinion, your body is working hard to heal and fighting pain can slow down that healing process. Stay comfortable. For you that might mean prescribed painkillers, over the counter pain relief, or crystal and deep breathing, whatever. Everyone is different. Be prepared with prune juice or a laxative of some kind. This won’t last forever.
Semi-upright with my arms propped up on king-sized pillows by my sides was the most comfortable way for me to sleep. I borrowed a large, firm wedge pillow to lay on from my beautiful neighbor who has back problems. Forty-five degrees upright felt just right. My husband called me Mount VeSUvious.
Reach out to your real friends, you know who they are, and let them know you’re going to call them at random times after your surgery. Put them on stand-by. Funny friends are what you need. Let them know that you may want to talk about your situation, but you may not. You likely won’t want them to fix you or give you any advice. How can they help you feel better? They can make you laugh. They can tell you that they came home to find their new puppy eviscerating the couch and how much it cost them and how long it took them to clean it up and how they are considering sending him back. They can share the intimate details of their latest herpes outbreak. They can practically re-enact the time they shit in their pants on an airplane ride home from Mexico. Okay, actually she was wearing shorts. And yes, I have amazing women in my life who healed me with these stories. Give the real people in your life a heads-up that you might call them for some lightness and a reminder that a double mastectomy is challenging, but not challenging like herpes or food poisoning or a new puppy.
11. Super soft, cheap bras.
You’ll be happy to have a couple of these on hand when you’ve graduated from recovery, and you’re ready to go out in the world, but you don’t really feel like going shopping. If you’re have reconstruction, I’d be shocked if you ever want to wear an underwire bra again. It’s a good idea to purchase a soft underwire-free camisol/tank bra/basic training bra. Don’t spend a lot because you really don’t know what you’ll want, but it will be nice to have one when you’re ready. These usually come in S, M, L sizes, so just get what fits now and they’ll stretch, or contract, to fit your future self. Going braless forevermore is something you can also look forward to (see #1).
12. A supportive community. Are you feeling isolated and alone? Read on.
There isn’t a lot for me to say other than You’ve. Totally. Got. This. And, I completely understand if you don’t believe me.
But, I’m serious, you’ve got this. I bet that you’ve done harder things than what you’re about to do. For me, recovering from childbirth was harder (and took longer) than recovering from a double mastectomy. And remember, bodies are like snowflakes. No two are exactly alike. So all those stories you’ve heard about how easy or horrific her mastectomy was, I promise you, your experience won’t be like that. Say “no thank you, I’m a snowflake” to your brain when she starts comparing your experience to another woman’s.
You are strong, no matter what you’re feeling right now. You are in good hands. You have the support of many strong women and men. Every woman that has come before you on this journey is standing right beside you today. We are all with you and we believe in you.
Give yourself the time you need. Listen to every little whisper from your body and pay attention to it. Take this time to fully relax and lay in bed and sleep late or watch Netflix and eat and drink and just melt into the couch with cozy blankets and pillows for as long as you like.
Keep things light. Call your funniest friend. Read funny books, watch positive TedTalks (Shawn Achor), and Oprah’s SuperSoul Sunday. Those 1970s issues of Reader’s Digest were right — laughter is the best medicine.
This is a good time to hibernate and soak up some love from the real people in your life. You know who they are. You are a real woman through and through with all of your stories and challenges and losses and victories. Just sit back. Let others take care of you for a minute. Let go and breathe deeply. It’s all going to be okay. You are not your body. The essence of you remains fully intact. Call a friend who knows how to just sit and listen without fixing. Share your experience or choose to keep it private. There’s no wrong way to do this — just your way!
Imagine me quietly holding your hand through the entire thing. Soon, you will have turned a corner and this will be way behind you, down the road. You can do this and you are loved. We’ve got you.
Susan + every woman who’s had a mastectomy + all their friends