Thursday, April 4, 2013

BREAST CANCER SURGERY TIPS

My writing prompt in the Health Activist Writers Month Challenge is to create my best resources that someone newly diagnosed can use when advocating for themselves or a loved one. Been there, done that! After my double mastectomy in February 2011, I compiled a list of things that helped me prepare both before and after surgery. I hit a nerve — it's my blog post with the greatest number of hits.

Some of these tips apply before your surgery, some during, and some afterwards. With some minor tweaks to update a few items (for example, I combined shopping tips and added a photography section), here are my TIPS ON HOW TO PREPARE FOR BREAST CANCER SURGERY. I hope it helps you or someone you know. Please feel free to share!

    1. START FRESH! A clean, fresh home pre-surgery creates a calm and peaceful environment in which to heal. It also helps reduce germs. So get cleaning! (It'll help take your mind off your upcoming surgery and reduce anxiety too.) If possible, arrange for someone to handle the cleaning and the laundry for the first month after you're home. You won't be able to push or pull or reach for or lift anything over five pounds post-surgery, so housework is off-limits until your physician clears you for activity. IMPORTANT: While you're cleaning your house before surgery, free up some future brain cells by creating a list of all your logins and passwords for the many banks, credit cards, bill pay, shopping and other websites you frequent. I also made notes to myself about how and when specific bills were being paid, just in case I forgot. (And I did!) Surgery + anesthesia = a recipe for forgetfulness and confusion. The last thing you need to worry about is remembering all the stuff currently in your head. Put it on paper (perhaps in a pretty journal) and keep it in a safe place. (Do not store your passwords on a portable device. It's not safe.)  
    2. RESTOCK YOUR PANTRY Load up on high-protein foods and snacks like organic cheeses, nonfat Greek yogurt, cottage cheese, tuna fish and peanut butter. (For a more high-protein snacks, click here or here.) IMPORTANT: Protein promotes proper healing and is vital to your recovery, so don't skimp! 100 grams a day is optimal. Remember to make and freeze meals for your family ahead of time that are simple enough for an older child or adult family member to reheat. Take a multivitamin.(You need additional vitamins such as A and C during the wound healing process.) Drink enough water. (Lots and lots of water.) Place plates, glasses and pantry staples within easy reach on the kitchen counter. Say YES! to offers of food from others. Don't be shy about telling people what you prefer to eat (low fat, high protein, vegetarian, organic, no soy, etc.) If you’re lucky to have enough friends and neighbors who want to feed you and your family for an extended period of time, put someone (but not you) in charge of organizing these meal deliveries. Mealtrain.com and lotsahelpinghands.com are both are free and will help folks organize meals for you and your family.
    3. GET STRAIGHT WITH FRIENDS AND FAMILY Make sure you line up people to care for all the things you normally care for — your kids, pets, parents, plants, partner. If you live alone, ask a friend to stay with you for the first few days you are home. Again, say YES! when someone offers to help — and then assign them a task immediately. People always say "Call me if you need anything," but as a patient, you will have more on your mind than finding a way for someone to help you. So here's my take on this sticky situation: If you really want to help me, give me some options of what you are willing to do for me right now. Example: Tell me you'll drop off dinner at 6PM on Tuesday. Tell me you'll take my kids to the movies for the afternoon (and take my husband too!). Offer to clean my kitchen floor or change my sheets. Just don't ask me to call you from my recovery bed to ask for your help, because I won't. It's hard to do, and I'm busy healing.
    4. GEAR UP THE LOO Consider installing a handheld showerhead in your bath, and place shampoo, conditioner and liquid soap bottles on the shower floor (because you won't be able to reach anything above your head for a long while). Keep an inexpensive plastic shower bench there too. Until you are cleared to shower by your doctor (because you can't get surgical dressings wet right away), try this makeshift way to bath: Wrap a towel tightly around your neck and shoulders, cut a hole in a big black plastic bag that's just wide enough for your head, then slip it over your head and secure it tightly to the towel. I was able to take a partial shower like this with the handheld showerhead, and even have my husband wash my hair as I sat on the shower bench. (Read about how that went here.) IMPORTANT: Anesthesia and pain meds are constipating, so drink plenty of water, eat plenty of fiber, and take a Colace in the morning and night. If all else fails, Dulcolax will save your day. Before surgery, wash and color your hair, paint your nails, shave your legs and underarms. IMPORTANT: Post-surgery, use an electric (not a straight) razor under your arms. You will be numb — you won't be able to feel it if you nick your skin. And you don't need to risk getting an infection.
    5. MAKE YOUR BOUDOIR COMFY Set up a bedside table with room for anything you could possibly need: drinks, eyeglasses, TV remote, meds, snacks, more meds, books, Kindle, notepad, pen, iPad, iPod, iTouch, cell phone, laptop (chargers too). Some doctors suggest sleeping in a recliner after surgery. (Many people prefer it to sleeping in bed the first week or two.) Only you know yourself and what will make you comfortable; you may even consider renting a hospital bed. You'll find a bolster pillow is handy to prop under your arms. A wedge pillow allows you to sleep on a slight incline (keeping your chest slightly elevated helps with lymphatic drainage) and makes it easier to get up and out of bed post-surgery. Find low-cost pillows at Bed Bath and Beyond. If you're not sure about sleeping on an incline, ask your plastic surgeon before you leave the hospital. She or he will have an opinion.
    6. GET SOME PRE-SURGERY RETAIL THERAPY Purchase PJ's with button-down tops (and pockets if possible), zip-front hoodies (their interior pockets are the ideal size for drains) and slip-on yoga pants. Oh, and a cute, colorful, light-weight robe for quick coverups when visitors come a-callin'. Go through your closet and pull out all the button-down shirts you own. You're going to need them. You won't be able to reach over your head for a few weeks to put on anything tighter than a large T-Shirt. You may also need to go shopping for a few items to get you through the post-surgery phase. I went pre-mastectomy shopping at Nordstrom Rack (read about that experience here) but was not prepared for the emotions that went along with that shopping trip! Yowza. (You've been warned!) Also ask your surgeon what type of garment you will be going home in and/or need to wear once back home. Some docs prefer surgical bras or vests; others are fine with soft camisoles and sports bras; still others may want you in a compression garment. Each surgeon (and surgery) is different, so ask these questions well before your surgery date and make purchases ahead of time so you will have the garments at home, washed and ready to wear when you need them. Oh, and order two of everything: One to wear; one for the wash. My surgeon sent me home in a very plain, utilitarian (read: ugly!) white compression vest, so I bought a "fancier" beige vest online at contourmd.com. It's lacy and cut slightly lower in front so allowed me to wear a larger variety of shirts. As for regular sports bras which close in the front, the following are popular: Hanes Zip Front Sports Bra and Under Armour Endure Zip Front Sports Bra. I have both the Danskin Now High Impact Zip Sport Bra and the Fruit of the Loom Front Close Sport Bra. There's also a Cool Comfort Bra that comes with a sewn-in prosthetic.
    7. SECURE SURGICAL STUFF Post-mastectomy, drains are put in your side(s) to allow your body to drain off extra fluid. These drains are thick — the size of a McDonald's straw — and the part that hangs outside your body can be more than a foot in length. At the end of each drain is a 4-inch x 2-inch bulb that excess body fluid drips into. If you are having a double mastectomy, that means you could have up to four of these drains dangling from your torso. You need to either pin them to your undergarments or tuck the bulbs and drains into something to keep them from dangling and getting in the way. (And they will get in the way.) You also don't want to tug on them; they hurt like hell. If you have a zip-front hoodie, check the inside lining — there are usually small pockets already sewn in that are perfect for drains! If it's too hot for a hoodie, consider buying a drain belt. I purchased one called the Marsupial; it's a terry cloth belt with big pouches for the drains. I found this to be a cooler option than the hoodie for sleeping. There are also peel-and-stick products called Pink Pockets which you attach to whatever you're wearing; and tlcdirect.org has camisoles with interior pockets. Worried about emptying drains yourself? Sometimes it’s not just a matter of squeamishness; it's painful to reach around and push the fluid down the tube. (The liquid must be measured and kept track of so your surgeon knows when to remove them.) Make sure someone shows you how to empty your drains before you are discharged! Get your prescriptions filled ahead of time (with easy-open lids — unless you have small children in the house). New Rx's that you may receive prior to your surgery include antibiotics, pain meds, and prescriptive antibiotic ointment. And while at the drug store, get a couple boxes of 4" x 4" gauze padsalcohol and paper surgical tape. Be sure to save all your medical receipts for tax purposes. 
    8. PHOTOGRAPH YOURSELF PRE-SURGERY I can't tell you how many women have said, Why didn't I take any naked pictures of my breasts before I lost them? Your breasts are an important part of your body; you will one day want to see them again. And you will one day forget what they used to look like. (Trust me.) Grab your camera (not your cell phone, you don't need boob shots floating around on that device!) and start shooting. The trick to keeping a digital diary of your pre- and post-surgery process is to stand in the bathroom, look in the mirror and then you can see the image you are taking in the screen on your camera. Make sure your lighting is always the same. Take full-on (no head, nothing below the naval) images, then move in to each boob. Get progressively closer. I never use a flash but I make sure my natural light is consistent. (Makes it easier to compare.) Take different angles, take a photo of both sides individually, get up close, get farther away. One thing I didn't do and wished I had: hold a nickel or a quarter next to your nipple so you can gauge the size. Once they're gone, it's hard to know exactly how small or large they really used to be, even in photos. This will help in recreating nipples down the road if A) you are losing your nipples in surgery and B) you are having reconstruction and/or tattooing. If possible, ask your husband or partner to also take several photos of you. They can stand farther back than your arm can reach. IMPORTANT: You will want to take digital images of how you heal post-surgery as well. I've found it vitally important to photograph my incisions up close so I can visually monitor how they are healing. (Going off memory doesn't work. Does this look better or worse than yesterday? Pull out the pictures and see.) If your camera has a "macro" setting, use that, as it allows you to get in close and still be clear. I never include my neck or head in my pics; but that's just me. Do what you like. Just be aware the images are on your camera; remember that once you download them onto your home computer or portable device, store the images safely where no one else will see them. This is pretty private stuff, but also medically important — and graphic. There’s no reason to shock friends and family by accident! Lastly, if you are concerned about redness, swelling, discharge, an incision line not healing, a dark spot, a green or yellow spot, bleeding, email a Jpeg image of the troublesome boob to your surgeon. (This is another reason why you should never include your face when taking these shots.) I have emailed my plastic surgeon several times when I've been worried and it's saved me a trip to his office. And in one case, it even allowed us to act immediately and schedule me for next-day surgery because necrosis had developed.
    9. TAKE THIS TO THE HOSPITAL Type up a list of all the medications you currently take; print out two copies. Keep one with you and give the other to a friend or family member who will be at the hospital with you. You'll be asked the same Rx questions repeatedly during hospital admission, and this will save you from trying to remember everything. IMPORTANT: If you have an Advanced Directive, bring a copy with you. You will be asked if you have one, so it's better to be prepared — as icky as it feels. Suntan lotion is great for masking the unpleasant odors that will waft from your body as you recover (and waft they will when you can't shower) so pack that too. Suntan lotion may even make you think you're at the beach. (Well, not really, but the fragrance will bring back fond memories of the sea, and how bad could that be?) Pack an inexpensive eye mask to dim the bright lights of the big city hospital, and disposable ear plugs to help you catch a wink or three. IMPORTANT: Whenever someone brings you something to drink, ask them to open it (even if you're not ready to enjoy it just yet). Trust me, you won't be able to open it yourself. Nor will you be able to adjust your own pillows or skootch yourself up, down or around in your hospital bed. So basically, anytime anyone is visiting you (nurse, friend, husband, whomever), think of things they can help you withIMPORTANT: Consider asking someone to stay with you overnight during your hospital stay (at least the first night). I didn't do this and wish I had. When no nurses can be found and your pillow has slipped under your bum instead of your head (remember, you can't use your arms after a mastectomy), someone being there to help you whenever you need it can make all the difference in the world to your comfort level. IMPORTANT: To avert nausea post surgery (very common, unfortunately), talk to your anesthesiologist about ways he or she can help prevent that — you'll have ample time to do this while they are prepping you. He/she can take the necessary steps medication wise to help prevent you throwing up. Be very specific about your sensitivity to any medications (both Rx and OTC), and be firm about your desire to not feel nauseous! The meds exist to help you. (Please don't suffer like I did here.) 
    10. GO PHYSICAL, THEN MENTAL Reduce anxiety before surgery by taking a walk, a hike, a jog. Hit the gym and work those soon-to-be traumatized pectoral muscles. Do bench presses and lat pull downs. Try to do 100 pushups. You won't be doing any of these things again for a very long time (and in the case of working your pecs, your doc may never want you to work them the same way again). Lastly, imagine yourself in a place you absolutely love and focus on this image as you are getting prepped in the hospital for your surgery. Incorporate all of your senses: Imagine the fragrance of the flowers or ocean, imagine hearing the birds or rustling of the trees, imagine feeling the wind on your face, imagine the flavor of your favorite food. And then imagine all the very capable doctors and nurses doing their absolute best in the operating room to rid your body of cancer and start you on a perfect path of healing as you drift off in surgical slumber. Before you know it, you'll be hearing (and not just imagining!) a nurse calling your name — and your surgery will magically be over. Once you go home (2-3 days generally), remember to rest, rest and rest some more. You can't lift or reach or push or pull, so read, write, text, talk or watch TV instead. IMPORTANT: Take a nap and a walk every day. (I cannot stress this enough! You'll recover quicker if you do.) 
    11. REMEMBER THE ZZZs Try and look at your forced recovery as permission to take a LOT of naps. You need the — and you deserve them.
    (Feel free to leave a comment below. I love hearing from you!)

    11 comments:

    1. Renn, this is an awesome resource list! Wow! While I hate that you had to go through the hell that is BC to gain this wisdom, I'm sure glad you're sharing it.

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      1. Thanks, Pink!!! Happy to share if it can spare someone pain or discomfort. ;-)

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    2. Your point about talking to the anaesthesiologist is something I had never, ever considered possible before my surgery. (Since it was my first surgery ever). But that's a mistake I won't make twice. A night of vomiting is not fun following a mastectomy.

      What a great list! ~Catherine

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      1. Thanks, Catherine! I know the feeling of waking up feeling like my chest was caught in a burning vice and then feeling dizzy and vomiting for hours. (Good times!) With a little extra care in the OR, it can be avoided. But we have to speak up.
        Sorry you had to endure this too.

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    3. Oh, I wish I'd had this before the mastectomy and DIEP flap. The hand-held shower and the plastic stool were life-savers for me.

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      1. Amazing how having place to sit down in the shower can transport an otherwise ordinary daily function into a relaxing, peaceful, spa-like experience when you've been waiting days and days to take a bath!

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    4. Excellent list of things to do to prepare before the mastectomy. Great job Renn.

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    5. dear renn,

      i am so impressed with this post - what an excellent resource you have created! whether or not one is having a mastectomy, so many of the suggestions can be nicely accessed for a variety of other scenarios: avoiding nausea, preventing constipation, using all the senses to help be relaxed, medication lists (loved that you suggested giving a copy to a friend/family member to keep whilst in the hospital). and lots of people don't bring a copy of their advanced directive for EVERY procedure because they believe if they've presented it for their chart once, they don't need to again. they do. that previously charted copy is most likely in records storage.

      i am sorry for what you had to go through in order to be able organize this incredibly comprehensive list, but you should be so proud and gratified that it will be of enormous help to so many others - preparedness helps one have peace of mind, knowing what to expect is empowering, and practical informations helps so much to assure comfort, safety, and the best recovery possible.

      love this post, renn, and love you, too XOXO

      karen, TC

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    6. Great tips ... have a few more to add : )

      1) Sports Bras: I could not find any front closure styles I liked and the velcro/zippers were bulky. I asked my plastic surgeon and his nurses why I couldn't just wear the ones I had (brought them with to show them pre-surgery). Their response was that they don't want you putting anything over your head.

      Ahh .... but this is where they were wrong. Many women (including myself) step into their sports bras, feet first, and slide them up our bodies and easily put the straps over our arms. (Trust me, as a 36C pre-surgery, putting a sports bra on over my head was a sure path to strangulation, so I've never been a fan of bra-over-the-head) ; )

      I will NEVER forget the laughter (and look of amazement) on their faces as they gave me their blessings. Obviously, check with your doctor/staff, but it gives you more options!!!

      2) For those who live alone or don't have people to help at all times, move frequently used items (glasses, plates, pantry items, etc) to lower shelves so you don't have to reach. Keep a small step stool in your closet and kitchen when you have to reach for something.

      Having to fend form myself helped me heal more rapidly and challenged my range of motion in a very positive way vs having someone at my beck and call. The step stool also provided a great glute exercise.

      3) Medications, bottles, cans, etc. Consider having your pharmacist use non-childproof caps on your meds (assuming this is not a safety issue in your home). Trust me, you will not have the arm strength to open child-proof caps for a while. Same for bottles, cans, etc. Have a 'to do' list for visitors to open when they visit.

      4) Hate your drains? Walk, walk, and walk some more! This helps fluid to drain more quickly and you really do feel better being able to do some things for yourself.

      5) Depending upon what your team advises re showering, treat yourself to a wash and blowout at your salon. I went the day I left the hospital (Hint: you obviously don't want to lie back in a chair and pull your chest area while they wash your hair: I bent forward at the waist and comfortably and balanced my hands around the sink). Sheer heaven after being in the hospital for 3 nights and we were not allowed to shower until after the drains were removed (every surgeon has their own protocol).

      6) Flowers ... some people are very sensitive to scents/smells following surgery. Despite their beauty, certain flowers were too fragrant for me and had to be removed. : (

      Hope these help --- this was a great post! : ) xx

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    7. Oh this is a great list. Some of these things would have been a great idea when I had my masectomy and chemo and I think will stills serve if I have to have further treatment. Thanks so much!

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    Your comments are encouraging — and encouraged!