Things I Wish I Knew Before Surgery: Preparing for a Cystectomy
After you and your medical team have determined that a radical cystectomy (RC) and ileal conduit (IC) is your best bladder cancer treatment option, preparation is invaluable. Having a surgery such as this can, without question, be stressful. Rest assured that many of us have been through the same procedures and are living a normal, active life. While there is definitely value in researching your cancer and treatments, too much information can add to your stress.
Start walking before surgery
Recovery from major surgery takes time. You will have good days and other days where your energy is non-existent. Pushing too hard for a fast recovery may do just the opposite and set you back. Being in good physical condition is beneficial. If you are not a regular walker, it is never too late to start walking so your legs and body are prepared for recovery. Walking is essential during recovery and will help your energy return so start before surgery.
Preparing for your bladder removal
"Try on" a wafer and bag. If a stoma or wound care nurse is available in your area or someone you know who wears a bag, ask for a bag/wafer or 2 and try them out. Actually seeing what this looks like and how it may fit on your body and underclothing will prepare you for later on. Also, it assists with determining where you would like your stoma.
While the surgeon has the final say, your input for placement is important.
Outies are easier
Speak with your stoma nurse and surgeon about an "outie" stoma versus an "innie", just like your belly button. Innies or stomas that are either flush with your stomach or below can be a problem as the urine tends to go under the wafer versus directly into the bag. My stoma is about 1 inch long when it is emptying and 1/2 inch when not.
Trust me - this is something worth having a discussion about.
Packing for your cystectomy
Wear non-restrictive, comfortable clothing to the hospital and the same going home. Pack light. I suggest a light robe, slippers, toiletries, and possibly a phone, iPad, or laptop and chargers. I wore 2 hospital nightgowns - one with ties in front and one with ties in back - my entire stay. If you have a leak or other issue, the staff will simply change your gowns and clean things up. For the ride home, a small pillow to place between the seatbelt and your abdomen will make the ride easier.
Surgery can be exhausting
You may be very tired, have a minimal appetite, and have some temporary tubes. You will have your urostomy bag and night bag. The medical staff will have you up and walking fairly quickly. Walking helps with healing and to "get things moving," so to speak. Rest so your body can begin healing. Walk frequently and slowly build up your distance. Visitors can be tiring also, so consider limiting them at the hospital. Have them visit when you are home and have them join in a short walk.
Take some supplies home from the hospital
Accept any and all urostomy bags, supplies, and samples they will give you at the hospital. If they do not offer, ask for some before you are released. Also, the contact information of your stoma nurse is invaluable when you have a leak or other issue with your IC.
One day at a time
My hope is that you feel the relief that I did when your cystectomy is over and you are on the road to recovery. Take it day by day as you rebuild your strength. Preparing for a cystectomy and getting through it is not easy but probably not nearly as difficult as you have imagined.
Finally, be as prepared as you are comfortable with - and then let it go. Don't spend all day worrying about things you have no control over. Your end goal is to be cancer-free, and this surgery is an essential part of that goal.