If you find yourself or someone you know in need of a double masectomy, here’s my knowledge to date.
#1. Mindset – Give it all to God! You won’t want to do this without Him. Be positive. Nothing good comes out of negativity.
#2. Surround yourself with positive and supportive people. You will need them.
#3. Share your story. People can’t help if they don’t know.
#4. Workout. You’ll have no use of your arms, so a strong core and legs will save your caregivers and give you a tiny sense of independence. Since you’ll never know when or if you’ll have to have this procedure, just start working out today and never stop.
#5. You’ll need help. Just get over it and ask. This is very hard for me. I don’t have a choice.
#6. A recliner is required. I borrowed one. Put a sheet over it. It makes a difference.
#7. Pillows will bring great comfort. I have a firm wedge that goes in the back of my recliner. ($30 from Bed Bath & Beyond) The surgeon gave me this large heart pillow a church makes and gives away. Some of my friends bought me these smaller heart pillows and a neck roll. I use them all. I also have a heavy Tempur-pedic pillow from Sam’s with a cooling agent that I put on my chest when I sleep. ($30) and somehow this pillow takes the pain away. Then I have a normal pillow I actually put my head on.
#8. These soft T-shirts my mom made for me are greatly needed. My mom cut these t-shirts, so I could put them on like a button down shirt since nothing can go over your head. She also sewed in these pockets for my drains. This is HUGE! I can’t stand tape on my skin. I hated those drains sitting on my stomach. These shirts have taken all these problems away. I’ve never wanted to learn to sew until now. Now, I want to make every woman who has to go through this at least two of these shirts and give them away to them for free. UPDATE: Currently (April 2014) we are starting to test shirts and gain feedback, so we can mass produce the best possible product. I’m so excited about this!
#9: Maintain your drugs. Put someone dependable in charge of them. Don’t skip. Don’t go too long. Handling pain is crucial!
#10: You’ll need a breakfast-in-bed tray to eat off of.
#11: Get a kiddie cup with a straw. The one from the hospital is too heavy.
#12: Someone else has to take on cooking, cleaning, and laundry. This has been my mom-of-the-heart this week.
#13: Hold a pillow tight to your chest if you have to cough. It’s going to hurt so bad, but pneumonia will hurt worse so just cough and cry.
#14: My husband is my hero. He has a full time job caring for me. He never gets more than 3 hours of a sleep at a time. I have to depend on him to dress and undress me. He keeps up with all my meds and empties my drains. He must care for all my needs. I can’t move without his help. He does it all in love and kindness. I’m so lucky!
#15. Soft everything that touches skin is needed. Soft PJ’s, button down or velcro shirts, soft blankets, soft sheets, soft pillow cases, soft pillows, soft wipes, soft towels, and soft socks.
#16. Be patient. It’s hard to read, write, and watch shows after all of this. Drugs, pain, or who knows what else complicates my brain. For those who know me, know this is driving me crazy! Thank you cards might be delayed. Forgive me.
#17. Visitors mean a lot. You don’t have to stay long. You don’t have to bring something grand. You don’t have to say a lot. Showing up is enough.
#18. Share your advice. Share your survival stories. Share hope. Share your struggles. You help us know it’s okay to break over stupid things and cheer for making it to the next pain pill without crying. Don’t tell us about people who’ve died of cancer. We don’t need to hear those stories today.
#19. Be there when the patient is in shock, denial, coping, pain, crying, afraid, laughter, and when they rejoice. No, it won’t always happen when you think it should and it might happened all out of order. Don’t judge them just be there.
#20. If you can’t be there in person, find a special way to be there in some other way. My oldest sister lives in Colorado. We go on “walks” together. I have family and friends running or walking for me until I can again. I can’t wait to meet up with them to celebrate my victory in a race somewhere. My baby sister sent me one of our daddy’s shirt. The strength attached to that shirt, those walks, and those miles are worth more than gold.
#21. Pray. Pray even if you don’t think God listens to you. Pray even if you don’t believe in God. Pray even if you’re mad at God. God will show you He’s there at some point.
#23. Money may not seem as special as a gift, but when every time you go to the doctor the amount you have to pay is over $1000, money is needed more than most everything else. No amount is too little either.
#24. Humor is a great gift! We need to laugh even if it physically hurts.
#25. I’m sure I’ll have more things to write, but it’s taken me since Saturday to write this much. Hopefully, it makes sense.
I pray God uses my journey to make another woman’s journey and their caregivers’ journeys a little easier. No one should have to go through this, but I hope I can be open and honest enough to make it easier on someone else.
Do to others as you would have them do to you.