Jack, age 54, lives in a suburb of Chicago and works in fundraising at a nonprofit. A number of years ago, he was diagnosed with colon cancer and needed surgery to remove a section of his colon. Before the operation, he researched the surgery.
He got more personalized information when he met with the surgeon. The doctor did a great job of explaining where the tumor was located, what they knew about it so far, and his plan for the operation.
The surgery proceeded uneventfully, and Jack was lying in his hospital bed the third day after the operation when the pain became overwhelming.
"I was getting these tremendous pains in my abdomen. Remember the movie 'Alien' where the little monster jumps out of the guy's stomach? Well, that's what I felt like. I thought all these staples were going to go 'bing-bing-bing' to the other side of the room, and this little monster was coming out of my stomach."
Jack pressed the call button. The nurse took one look at him lying there as white as a sheet and asked, "What's going on?" When Jack described the pain, the nurse explained exactly what was going on in Jack's colon to cause this surprising level of pain.
"Three days after they reconnect your colon, it decides to say, 'Well, you know, I think maybe I'll start trying to work.' They took out a 16-inch section of your colon. Now the two other pieces have been put back together. The one on the top is coming down saying, 'Okay, now I'm waiting for this next section to do what it's supposed to do,' but the next section isn't there. The lower section isn't quite ready to receive things because it's waiting for the missing piece, so there's this little tussle at the point of reconnection."
After he was finished, he said, "No one's ever told you this?"
Jack felt a little silly for never having asked what would happen during recovery. He and the surgeon had both focused on what would happen during the operation.
Jack said, "That taught me a lesson. If I ever have to have something like this again, I'm going to ask, 'Now, what should I be expecting during my recovery?'"
He went on to say, "Had I known that three days after surgery, I will probably experience this, my anxiety level would have been a lot lower. I still would have been in pain, and I probably would have been worried. I almost passed out. But at least I would have realized, 'They told me this might happen and it is happening, so I guess it's probably okay.'"
Surprisingly alert despite the pain, Jack had the presence of mind to ask what he should expect for the rest of the recovery period. The nurse explained in detail the progress he could expect, leading to an almost full recovery six to eight weeks later.
Jack has been cancer-free for more than five years, and he has become very practiced at asking questions of his doctors.
It's common in health care to assume that the patient doesn't need to know what will happen next. You can avoid surprises after major treatments by asking thoughtful questions ahead of time. Some possibilities are:
- What will the first 24-48 hours be like? What will the first week be like?
- What will happen during the surgery/treatment that might cause me temporary problems right afterward? (For example, will my throat be sore because I had a breathing tube?)
- When should I expect to be able to eat, drink, urinate and defecate?
- When should I expect to be able to get out of bed?
- When should I expect to be able to think clearly?
- When will I be able to bathe normally?
- When will I be able to have sex?
- How much pain am I likely to have and for how long?
- When will I be able to go back to work?
- What will I need to do that's different from my normal routine in order to recover as quickly and completely as possible?
- What restrictions or limitations will I have and for how long?
- How long should I expect it to take from the time of the treatment to the time that I am back to normal?
- Is the new normal going to be like the old normal, or will I have some permanent changes to get used to?