On May 6, 2020 I had a cancerous prostate removed. It was just as my hospital in St. Louis was opening up to what they called elective surgeries, after being in lockdown for two months. I was able to leave the hospital later that evening and counted myself lucky that I didn’t have to spend even one night to recover from my surgery.
That was the last bit of luck that I got until recently, after a series of hospital stays that added up to more than two weeks’ worth of visits over the summer, dealing with various infections. This included three trips to the emergency room, five different radiologist doctors, and countless nurses. I am fine now: no remaining cancer, negligible PSA, and just a few small scars to show for my troubles.
From this experience, I want to share some of the lessons that I learned from how to cancer in these Covid times. You might want first to read this post about how to pick the wrong doctor for your treatment.
First off, understand that how you will communicate with your spouse, your family, and your cancer doc (and other supporting medical and support players in your health drama) will be very different, both before and after treatment. Covid means you can’t easily communicate: if your hospital isn’t yet completely “open” that means you won’t have visitors, or if you do there will be limits on when they can come see you. Your cell phone may or may not work inside your hospital room, and your room phone may not be able to receive calls from your family. The cell service in my hospital’s ER wing was nearly nil, and the hardwired phones were scarce and service was an issue.
Know your patient portal. Once I could get on the hospital WiFi, I was able to access my patient portal, where test results were posted. Sometimes the nurses were able to point out things while they were doing temperature and blood pressure checks on the in-room computers they had access to. It helps to know whether these test results are available, so that when the doctors are making rounds you have something to discuss with them.
Know how your communication channels will change if you must return to the hospital for follow-up visits. Now, you may have picked your surgeon or oncologist or whomever is treating you as I did: finding a doc who is tech literate and comfortable with communicating electronically. Will that same path be available when you are sitting in your hospital room and want to get their attention? What if you don’t have a computer and your cell is at 10% battery life? Your spouse may not be able to enter the hospital to bring you a charging cord but you might be able to find a friendly nurse who can loan you an AC adaptor.
How can you communicate with your doctor after you leave your in-office meeting with them? Nowadays we have all sorts of fancy online systems (such as my patient portal) to make it easier to ask your doctor a direct question. Do these questions get answered in a timely fashion? Some doctors will answer a direct email. Others don’t want to be bothered with this newfangled thing called the internet. Well, new to some folks.
Who you gonna call? Unfortunately, it isn’t the ghostbusters with their proton packs, although that would be nice. If you have had surgery, your surgeon is your attending physician. That means s/he will attend to your follow-up issues. He or she has admitting rights and can get you inside the hospital and get treatment faster than if you went to the ER (unless you are in a life-threatening state, at which point you will riding in an ambulance). Even if you are being treated (as I was) for subsequent infections, start with your surgeon’s office (or evening paging service) before you do anything else — if time permits.
Dr. Google is not your friend. If you have done your research and picked who will be your ultimate surgeon (in my case, a urologist), resist the urge to do any further self-diagnosis online. Too much information will just not be helpful at this point. By all means, prior to picking your doctor, Google (and Mayo and Sloan Kettering) away.
Find your support group and keep them informed about your cancer journey. I was lucky: I had a group of people, some whom I knew, some whom I didn’t but who knew me because, hey internet famous tech writer. They were invaluable in giving me all kinds of support. One example: a son of a dear friend was an interventional radiologist, the type of doctor who dealt with my lymph infections. This newly minted MD was helpful in discussing my case, even though he never looked at any of my scans or tests. Sometimes, just hearing a friendly voice is helpful to get you through the night. I wrote another post here about the rules of cancer fight club (first, tell everyone you know you have cancer).