I’m helping (?) a friend navigate prophylactic mastectomy.
It’s crazy to me how 3 years later (8 or so weeks from my most recent surgery) you still
can feel every nuance of mastectomy, as fresh as yesterday’s rain storm. One
question from her can send me right back into that moment with the flip of the
switch. What surprises me though is how her questions totally align with my own
experience. And it’s teaching me that surgeons can do a better job of preparing
women for the first few days after mastectomy. But the fault is also mine as I
did a poor job of preparing her and others upfront. Part of that was I didn’t
know what I should reveal upfront (as in this is part of everyone’s journey)
verses what tidbit I should wait and see if it comes up (as in maybe it was
just part of my story alone). Almost every single thing that has come up for
her I could have prepared her for in advance. So now I know. And therefore now
I am putting together this list to have on hand based on my experience and the
feedback of some others. She thinks I am helping her. Well, little did I know
that she is very much helping me. Ron and I have been in awe at what we thought
was our experience, very much translates into the experiences of others…and
therefore making me feel a little more normal.
This list is compiled based on my experience and feedback
from some of you after your procedure. It is by no means comprehensive (not by far!), but
hopefully it at least gets you started. I’ve made much shorter more superficial
lists in the past, but have learned in recent months that a concrete list you
can get to quickly may better serve me as I come in contact with others facing
their mastectomy journey. This list is not meant to overwhelm but rather to
equip you upfront, early on, before you find yourself spinning in the moments
of mastectomy. Knowledge is empowering in many ways and gets rid of some of the
fear or worrying of “what should I do?”. If you have other tips let me know. I
would love to have this list grow so we can share it with other women at time
of need.
- It’s best to get on a defined schedule early on. Think of toddler sleep training or infant schedules. You and your spouse find times that work for you and stick with it. It takes the guess work out of when to do what, adds structure and security, and helps prevent a chaotic evening because you forgot to fit something in earlier in the day. For example, assign 2 times a day to empty drains, assign a time for your shower (more on that later), figure out meal time, have food drop off at a specific window of the day, pain meds here, and so on.
- Drains can be painful, drains can be comfy. I didn’t learn the latter was an option until my sixth surgery. It comes down to drain placement and how much is coiled up inside the breast. You may be luck and have the comfy set.
- Drain volume will start heavy and lessen with each day or so. There may be a little up and down in volume, but not much. The goal is about <30 ml output in a 24 hours period. When you start approaching that you can know you will be very close to getting the little suckers out!
- You may need less pain medications than you thought. Mastectomy results in the removal of nerve endings, so you can feel some stuff, but not near as much as you would think. After about 48 hours post-surgery, you may find you can start weaning yourself off.
- While you take pain meds, be sure to add in a stool softener or stimulant. Just trust me on this. Start the day after surgery and stick with it. You don’t want to get behind the eight ball here.
- Emotions may be high early on, but soon after drain removal, you start to feel more normal. Just be ok with the fact that you may find yourself in a puddle of tears for seemingly no reason at all. There is a reason, you just may not understand it. Try to just get through the early days. Go on auto-pilot. Over time you can dive deeper. You most certainly will feel something and it may vary from hour to hour. Don’t be ashamed in what you feel. Know you most likely are having very normal thoughts and emotions. Don’t be afraid to reach out.
- Related to # 6. You are going to feel strange at your first attempt at a shower. I now know that several of us were on the verge of “passing out” (I blame the heat and blood pressure effects), and close to if not already in tears. I thought I was very alone in this response, and now know many women report similar experiences at shower time. The surgeon tells you to shower. And it’s important that you do. But let’s do a modification to it. I’d say you may be smarter to sit in a tub with just a few inches of water. Keep the drains hooked up so there is no risk of them or the incision touching the bath water. Get an empty cup or bucket and use it to pour FRESH water from the faucet on your head after you soap up. It is very important you remember NOT to use the water from the bottom of the tub, just fresh water from the faucet. You are mimicking a shower, but you don’t have to hold yourself up standing in a hot shower with little airflow. Best decision you will make for shower time. No passing out feelings, less tears. (I now have several people who stand by this as well after trying it).
- You may feel like passing out when it comes time to change bandages or what not. ALWAYS do these tasks laying down. Go ahead, close your eyes, have some music playing in the background, and go to your happy place. Leave the task to your caregiver. You just show up, that’s it.
- Get a lanyard or wide ribbon to wear around your neck. Hook your drains to that. No risk of getting them caught on your waist band when you go potty and easy to use in the shower/tub.
- Heaven forbid it is time for your first “glance”. I would recommend you wait a few days for that. You may think you are ready early on. Chances are, you are not. I have several women who confirm this and wish they had waited until their body have healed some. I’d say give it at least a week or so. And when you do it, blare some happy music in the background. And make sure someone is there with you. Either in the room or right outside the door. You may be surprised at your reaction. And remember how it looks in week one is not how it will look in month 2.
- The scars ALWAYS look better than what you can conjure up in your head. Another reason in addition to #10 above to wait a bit before looking is that time allows more healing = better appearance = less hyperventilation. Give them a chance to heal before you start judging them on the cat walk. Let your caregiver worry about inspecting it early on for healing. You wait it out and look at the art work when it is ready to be looked at. Trust me on this one.
- When you think you are ready to take your first trip out of the house. Wait one more day. = ) Just make sure you have at least 2 good days in a row before you tackle that.
- When you think you are ready to go out to dinner for the first time. Wait one more day. = ) And go alone. You may think you want to meet friends out because you do get stir crazy and lonely at home, but you will be surprised how exhausting the event can be by the time you dress, get parked, walk in, find a seat, order food, then try to eat. Go first alone (with family) as a trial run. If you do that successfully, THEN invite others to join you.
- Don’t be surprised if you have a “shooting pain” sensation. Think of it like a “shock” feeling running down a nerve in your breast. Though the nerve endings have basically been removed, you still feel this phantom like pain. It varies in occurrence (several times a day, once a day, once a week) and duration (1 week post, 2 weeks post, 2 months post, eternity). Mine never went away as in 3 years later I still have them. Some of them can take your breath away, others are more minimal in severity. It’s normal for this to occur post mastectomy and nothing to worry about. Pain that is growing in duration or severity could be a sign of infection and should be reported.
- Your breasts are going to be swollen. This swelling can last for months. As time goes on the body will reabsorb the fluid and they will diminish in their “puffy” appearance.
- While early on in this process (if you were open about your procedure) you may feel a tad overwhelmed with the outpouring of support. That is a wonderful part of mastectomy, the love and support you receive. Overtime, you may notice you start to feel alone. While people come out in droves early on, the numbers will drastically decrease after a few weeks. This is normal of course, but for you, you are still in the middle of mastectomy many months later so it can start to feel lonely as everyone moves on with their lives, as is expected, and you are still stuck in the middle of yours. Be sure to reach out and stay in close contact with your closest of friends. They can help you ward off some of that loneliness you may find in the aftermath. You may also feel more loneliness the day your caregiver returns back to work. Prepare yourself for that by maybe pre-arranging a visitor that afternoon. Or asking your caregiver to maybe do a half-day back at work that first day for you to ease back in.
- And related to #16, you are going to hear 100 times over how “brave” you are. And the very last thing you are going to feel in the moment is “brave”. In fact, you may start to loathe the word, as what you actually are feeling is very scared, fearful of the unknown, guilt, and so on and so on. One woman recently said to me “if I hear one more person tell me how brave I am, I’m going to scream!”. Just know the word is very well intended and yes in fact there is a form of bravery for CHOOSING this procedure. Know the word is going to annoy you, and also know that in the eyes of others you are in fact brave, whether you feel it or not.
- Sleeping is a challenge early on. Finding comfortable positions can be tough, and getting up and down from a laying position uses muscles you wish it didn’t. You just had you pectoral muscle filleted, so go easy. Some people prefer sleeping in a recliner. Some a bed. Try one out one night and one the next night and see which goes best. Also if you are laying on your back in bed, maybe get a foam wedge to help elevate your head and use pillows under your arms to reduce the stretch of the chest muscles. Just know up front it may take you a while to find comfort any given night. It’s going to be at least 2 months before you can lay on your stomach again. If your back starts hurting, try a night on the floor. Just have someone close by to help you get back up. (I learned the hard way).
- If you are choosing a surgery date, try to avoid the summer months. It’s super-hot and sticky for one. And for two, you have water restrictions for at least 6 weeks post-surgery. It’s no fun to have all your friends at the pool and you at home in a sports bra on the couch. Having had surgery in all seasons, I would choose the fall months. It’s tough to be stuck inside in the summer, and it is really tough on the chest muscle in the super cold months when you walk outside and have muscle “clamp down”. Spring or fall is the way to go when given the choice.
- On surgery day, you will want to take these items with you:
- A lanyard for your drains to clip on
- A pillow to hug for the ride home and maybe an extra pillow for behind your back
- Sit in the back seat and put the seatbelt around your lap, but the chest strap behind your back instead.
- A book, or music, or crossword puzzles or knitting, whatever. It’s easy to get anxious waiting for surgery to start. Take something to distract you. You don’t want your mind wandering around worrying about
- On surgery day, your caregiver will want to take:
- A book, or music, or crossword puzzles or knitting, whatever. It’s easy to get anxious waiting for surgery to be over. It’s a super long day (upwards of 5 hours). Take something to distract you. You don’t want your mind wandering around worrying about things.
- Have friends or family sign up for time slots to join you so you don’t have to do this alone. Your mind will wander too much with anxiety. (see # 22 below)
- Food, It’s a long day and you might not want to head to the cafeteria for fear of missing an update from surgery.
- Power sources for your electronics. Again, it is a long day.
- I am hopeful you have friends turn out to support your caregiver during surgery. However, chances are you are not going to be ready to see these friends after surgery. You may think up front that you want to see people right after. Don’t be surprised if you change your mind. GO ahead and have your caregiver warn people that they might not get to see you after surgery. You will likely want some space to yourself to adjust and you don’t want your friends to be surprised if that happens. Go ahead and assume you will not want to see anyone outside of immediate family for that day or a few days afterwards. Play it by ear.
- You will feel “something” if you go for delayed reconstruction or the placement of expanders. During this time your breasts will be much smaller than what they were before and what they will be in the future. In the case of delayed reconstruction, you may even have a concave appearance. In the event of expanders, think more flat chested or size A. For some women, this is a big change from where they were before, so it’s ok to have some emotions around that. Just know that it is a temporary event (unless you choose not to undergo reconstruction). It’s strange to see that change happen overnight the day of surgery.
- Your breasts are going to be numb, and it will catch you off guard. You may or may not get feeling back after reconstruction. I am 3 years out and can only feel the top ¼ portion of my breasts. Some women get more feeling back, others get none. This can feel very strange. You see yourself touching the breast, but you feel nothing. It needs to be said that this may have profound effects on your sexuality. You will want to prepare yourself and your spouse for this. Sexuality is different after mastectomy in a number of ways. You may be more self- conscious, Sensation changes. Positioning may require tweaking. Desire may be less. There is a whole list of things that can be said here. Likewise, you may have no impact at all. If you are having issues, you are normal and there is a good bit of literature out there about the impacts of breast cancer and mastectomy on your sex life. There are resources available, but I also think time is a huge healer.
- Your bra size, though hopefully similar to the before, may vary just enough that you will need new bras. You may also no longer need underwire. You will have to avoid underwire for at least 2 months post-surgery so as not to add pressure to the reconstructed area, but after that period you may find you have enough lift that you don’t need it at all. It will be a while before you are back into your silk and lace, so just prepare yourself for that. Also, if you experience swelling, that may affect your bra fit as well (and swimsuits).
- There are going to be moments when you need a girl friend or mother on hand. There are some emotions you need a female to process with. Your spouse is going to sometime feel lost because he can’t process all the emotions you are experiencing. Don’t be afraid to call in re-enforcements for a gal chat. Better yet, find someone who has done mastectomy before. You don’t even have to know her before-hand. Your surgeon can help you find a fellow patient. Introduce yourself to someone in the waiting room at your pre-op appointment. Ask on social media. A friend of a friend. That person can be an invaluable tool for you to prepare for from day to day, or to simply say “is this normal?” A stranger can very quickly turn into a friend.
- You never truly get over life events. You simply learn to get through them. Mastectomy won’t define you, but it will always be part of you. Let your story have purpose and let your story not only heal yourself but also those around you. You never know when the person watching you ends up in your very same shoes. Mastectomy can feel devastating, but over time you may find it feels empowering. Just know that takes time. And don’t rush the process.
- Prepare in advance a section of your closet as a “safe to wear” after mastectomy. Think underwear, yoga pants, loose fitting clothes. Things your caregiver can walk in a easily grab from the safe section and know you can put it on. Trust me, this is more for him and less for you, but it will alleviate many frustration on both ends.
- Make sure your spouse feels supported. He will have a lot of emotions of his own and he is likely going to feel alone in that. He probably won’t vent verbally so plan for the guys to come kidnap him one night and take him out for some mindless fun. Caregiving is exhausting, sometimes even more so than being the patient. Have girlfriend come hang out with you. It’s a win-win for your both.
- Know you can do this! The day before mastectomy you are going to feel so completely overwhelmed, but trust me the day after mastectomy is so much better. The unknown is now known and each day after get easier. Then you find yourself at a week and ready to take some trips out, then two weeks, then a month, then you are back to work and it’s all behind you and you find that mastectomy though different than you imagined can really bring about some amazing things in your life. Yes it’s scary, and yes, it’s challenging on a million levels, but oh does it bring about so many blessings. I hope that you find yours. And I hope you find ways to thrive in this moment.
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