What do I need to know?
- It is normal to be scared, overwhelmed, emotional and distracted. Processing all of the information you will hear and receive is intense. It's is OK to feel like you're not yourself. In fact, it's normal.
- I know this one is hard, but please don't go crazy Googling stuff. Try to trust web sites and books that your medical team directs you to. My medical team gave me a copy of the Breast Cancer Treatment Handbook. It is written by a nurse, and has been a great resource to me.
- Find support groups either locally or online. You don't have to be vocal, but sometimes just reading and listening is helpful.
- You might find that many people will offer to help you - co-workers, family members, church friends, friends - don't be afraid to be vocal about what you need. When someone offers to help you, thank them, exchange phone numbers, and let them know that you'll be in touch if you need anything. And then DO IT. The people who support and love you would love to help you, but they often don't know what do to. So tell them if and when you need them.
How do I prepare my home?
- If you are lucky enough to have full-time help at home (spouse, sister, mom) then you'll have it made. If not, you'll definitely want to place things you use frequently at counter-height. Things like cups, plates, snacks, clothes. I had T-Rex arms for several days, and there's no lifting or reaching up high for a while. Just think through the things you use the most. If you can't reach it with your elbows held tight to your sides, you should move it lower.
- My doctor gave me my prescriptions at my pre-op appointment so that I could fill them in advance. I highly recommend that you do that too. And ask the pharmacy for easy-open lids. It's impossible to open the child proof caps without help. I also couldn't open jars or bottles for that matter either. Write down when you take your medicines to keep track of when the next one can be taken. I had an antibiotic and a pain medicine, and I used a notebook that my surgeon gave me for all things related to the recovery.
- Make sure you check with your hospital about nail polish and acrylic nails. My hospital required me to have mine removed before surgery day. So in doing so, I had a foot massage a couple of days before my surgery. I'm looking forward to getting a new set after my exchange surgery.
- We installed a hand-held shower head. That was a blessing for the first showers. I highly recommend it so that you can control where the water hits you.
- Make sure you have loose, comfy clothes. During recovery, you'll live in them. I found some super soft PJ pants at Walmart. Kohl's had some soft button-up PJ sets. My favorite button-up shirt came from Cabela's - it's actually a snap shirt, but it's soft and vibrant purple. I wear it to my plastic surgeon appointments for my fills and I don't even have to change into a robe. I just unsnap and then snap back up when done.
- You'll likely have surgical drains to take care of in the weeks following your surgery. The hospital will teach you how to take care of them, but I'm not going to sugar coat it - it's pretty gross. Get some alcohol pads to help with clean up and minimize chance of infection. You might make sure your medicine cabinet has some basic things - gloves if your spouse will help you with your drains. Maybe some extra tape or gauze. I think each surgeon will use different dressings and give you instructions. I felt confident by having these things on hand at home. You'll be logging how much liquid you collect from each drain for several weeks to report to your surgeon. My surgeon gave me a template to write the amount on, but a notebook will work for this too. You'll want to bring this to your follow up appointments.
- A recliner. I sleep on the reclining ends of our couch with pillows to each side of me to add comfort. I sometimes put a pillow under my knees so that I can shift my bent knees to the left and to the right. Make sure you have lots of pillows or a wedge or pillow/chair thing if you'll sleep in the bed. I needed to move around a lot, and I find that I can sleep better on the couch where I can adjust how much I'm reclined back. If I lay flat, I wake up a lot through the night and don't feel rested in the morning. It takes a while to get used to sleeping on your back, but it will come.
- Lanyards for securing your drains. I had 2 - one for while I showered that would get wet, and one that I could wear the rest of the time. I also pinned the drains to my shirt. I rotated the way I held them up, but the lanyards were my preferred way. You'll also need large safety pins to help affix them.
- Come up with a plan for household chores like laundry and sweeping, mopping or vacuuming. You won't feel up to that for several weeks. Take care of these tasks before surgery as best as you can.
- Think through entertainment for yourself when you're at home recovering. Laptop. Movies. Recorded tv shows. Netflix. Magazines. Needlework or knitting. Puzzles. While you're not sleeping, how would you like to spend your time during your early recovery days.
How do I prepare my life?
- If you use online banking or pay bills through each company's web site, pre-schedule all of your bills for at least one month ahead. Many of my companies allowed me to set the date of payment for a future date that matched the due dates. Having all of my home billing taken care of in advance gave me a sense of peace.
- If you have bills that you mail or deliver, write those checks out in advance and have them ready. If you don't want to mail them early, arrange for a spouse, friend or family member to drop them off for you. Make sure you have stamps and envelopes.
- Think through children's activities in advance. Readjust or make arrangements for them to get to their activities. Ask for a friend or family member to help you, especially the day of surgery and the following 1-2 nights. My sister helped me with my son.
- Think through appointments that are scheduled after your surgery. Do you need to reschedule any? If you wear glasses or contacts, do you have enough to get through? If not, get those things done and make sure you're stocked up.
- I purchased a zippered camisole that has removable Velcro pouches which hold drains. I wore that at home after I could take the surgeon's wrap off. It was good to have a change to use when my wrap was being washed. I got my camisole at my hospital's breast care store. But I also like this one.
- Minimize the need for random errands. Try to think through what you use each day, and what you are running low on. Stock up. You'll need anti-bacterial soap like Dial for your surgery prep. Make a list of the things you need, and get them in advance so you won't run out of staples like toilet paper. Some additional suggestions include:
- Laxative
- Baby wipes or bathroom wipes to help with cleaning up
- Crackers and light foods in case your tummy is sensitive when you get home
- Favorite snacks, foods, drinks
- Pillows! Pillows to keep you from rolling over on your sides while you get used to sleeping on your back. And a travel pillow or heart shaped pillow to pad your chest under the seatbelt in the car. My travel pillow has been one of my most vital items. If you have lymph nodes removed, you might also want to have a pillow to keep under your arm/arms while you heal.
- Comfy and soft/loose PJ pants
- Comfy button-up shirts to wear all the time until you feel like lifting your arms again. (Hit up the clearance racks of men's shirts!)
How do I prepare for my hospital stay?
- Pack loose clothing to wear home. Button-up shirt. Slip on shoes. Your surgeon will likely have you in a garment that covers your bandages, but you'll need soft, loose clothes just for the trip home. Loose clothing is easiest to get in and out of at first. This includes loose comfy panties.
- Bring your small pillows to place under your arms if you need to and for the car ride home.
- The hospital gave me grippy socks and a gown to wear. When I got up to walk around, they gave me a second gown to wear as a robe. That's all that I wore the entire time. If your drains spill on you, or if you get sick, they'll quickly give you a new fresh gown. Plan to stay in the clothing they give to you while you are there.
- I felt very sick after my surgery, from either my pain meds or the anesthesia, so I didn't feel like doing anything besides sleep or just rest. I didn't even turn on the tv until the hour before I was discharged. I stayed overnight one night, and I stayed in my hospital gown and grippy socks the entire stay. I did bring a robe, slippers and a change of PJs just in case I needed them. I over packed. I had tons of stuff onhand, but didn't need any of it. If you are an over-packer like me, consider bringing comfort items that you like. Maybe things like chapstick, a brush, hair ties - though I couldn't lift my arms to make a ponytail - I had to have help. I brought my phone and phone charger. I had tweezers, gum, lotion, hand sanitizer, etc. I had way too much stuff, but it brings me comfort to be prepared. I also had a few snack bars and playing cards for my spouse, but he didn't use anything I brought. My throat was dry when I woke up from surgery, but ice chips and water helped.
- My spouse stayed with me in the hospital except when we agreed he would go home to sleep and come back the next morning. He was in charge of notifying my family, boss and close friends about my surgery and recovery. He had phone numbers of all of those he was to notify. I also asked my mom to cascade the news to other family members who knew I was having surgery. Whatever the plan, make one so that you don't have to worry about this.
What do I need to do to organize my medical treatment?
I highly recommend that you begin a 3-ring binder to organize and keep all of your medical records together. Your doctors each have multiple patients, but there is only one you. You are the one who is in charge of your own care. Stand up for yourself. Do not be afraid to request copies of your pathology reports, your mammogram, your MRI, your surgical reports, etc. Ask, and they'll give you a copy. I absolutely loved this guide, and I printed it out and placed several sheets into my binder. Here are the types of information that I have in my binder. It is a 3-ring binder with pockets in the front and back for loose papers:
- I pick up a business card from every person on my medical team and save it in a business card sized plastic sheet. If you talk with multiple doctors you'll need these.
- I printed a calendar where I write all of my appointments and when each step of my treatment plan has happened. I reference it all the time, so I have each month inserted in a plastic sleeve to reinforce it. If not, the holes I've punched would be shot by now.
- Pathology reports - my originals, and copies. The originals are mine and will never leave my hands. Those are in the back. I made copies of them immediately. If I show a doctor one of my reports, I hand them a COPY. That way if it gets kept or written on, I will always have my originals safe and secure.
- Insurance information and statements from my insurance companies
- My company's medical coverage document
- My company's leave of absence policy and the approved documents I submitted.
- All invoices I have received and paid, with the check number, date of payment and amount paid written on each statement.
- All appointment reports that each doctor has given to me
- All handouts each doctor has given to me
- A list of prescriptions I have taken, and any drug sheets from the pharmacy for each one
- Suggested questions to ask each doctor
- Notes pages to write down questions for your medical team, and answers they give you
- Pocket dividers, plastic sleeves, business card sleeves, plastic envelopes to hold misc. info.
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