Quijotesco joins you today from the Oregon Coast, which is about as pretty this time of year as anywhere in the world. This article is intended less an essay and more a practical guide. I wrote it with the idea that patients, particularly cancer patients, can often feel at the mercy of their disease. And to an extent this is correct. There are certain bad medical outcomes that, no matter how well you take care of yourself, are unavoidable.
So, yes, a certain amount of luck is involved in healthcare. But luck is often preceded by at least placing yourself where it is likely to strike. If you want a souvenir home run baseball, a good first step is buying tickets in the outfield. This article is written to give some practical tips on how to give yourself, as a patient, the best chance of having a good outcome. It isn’t exhaustive, but in my experience these are areas where many people can help themselves. If luck is preparation meeting opportunity, then this is the patient-facing side of preparation.
I’ll start by saying how nice it would be if we didn’t need to worry about these things. In a perfect world you would have (and I would be) a doctor who takes all of the time needed with you to manage your illness. A doctor who listens, asks the right questions, and tailors every treatment recommendation to your personal situation.
We do not live in that world.
We could sit here and dissect the ways the healthcare system fails patients, how it is incentivized for volume of medication rather than connection and empathy. I plan to write about that in future essays. Or we can all wait and hope that healthcare generally and our doctor specifically improves.
But hope is not a plan. Instead, I’d like to give some tips on how to advocate for yourself, make things easier for your healthcare team, and improve your chances of getting the best outcome. These are in no particular order and are drawn from my experience as a medical oncologist. I think they apply to other diseases and healthcare generally, but they are particularly relevant facing cancer
Have a battle buddy. The amount of information thrown out in a typical oncology clinic meeting is daunting. It can include complex treatment plans and so many new faces, anxiety and medication that it’s like a freshman rush party, just with all the music and fun drugs removed. Add to that the fact that it’s your health being discussed, and it’s pretty easy to reach overload. Oncologists know the look. A certain far-away stare that suggests new information is not likely to be remembered. This is where your buddy comes in. It can be a spouse or other family, but some of the best support comes from friends. This person is there to remember details, ask questions, and in general share the burden. A partner of some sort is the best tool you can have in the cancer fight.
Keep a journal. Write down side effects as they happen, or at least soon after. This means the number of times and days you had nausea or vomiting. The same with constipation and diarrhea. Also take note of the general fatigue and anything else that affects you. It may help to think about side effects the way doctors do. Oncology physicians use what is called the Common Terminology Criteria for Adverse Events (CTCAE). This is too full of medical terminology to be much use without medical training, but there are some general principles that apply. Your doctor uses this guide to “grade” the side effects of your treatment. When a treatment causes side effects that are mild-to-moderate, it’s usually “grade” 1 or 2. Side effects in this range are important, especially if they are increasing with each round of treatment, but grade 1-2 side effects often get monitored without changing the medication plan. Once the effects increase to “grade 3”, it is usually time to hold or modify. Grade 3 means the side effects are getting in the way of basic self-care, called “activities of daily living.” Any side effect that gets to this point is a huge red flag, and continuing treatment will often escalate the toxicity to the point where it becomes life threatening. Come to each visit with your list of side effects and how severe they were, and it reduces the chance something important gets missed.
Write your questions down. It happens to all of us. We leave the office and the one thing we’d planned on asking about slipped our mind in the course of the visit. Write questions down as they occur to you between visits and check them off as the medical team gives you answers. Combine this with your journal, and make that a must-have at each visit. When you get the answers, take the time to write them down if you need to.
Know your disease. Know your meds. There are times when other providers may need to talk to you about your care. The information they need may be in your chart, but “the chart” is often not organized well enough to quickly get to that info. Make your own record, with your meds (and their common side effects) and take it to every healthcare appointment. This goes for any supplements you take and medications you’ve discontinued as well.
Plan ahead. Your provider probably has a system for weekend coverage, but that system may not be very convenient for you. If it looks like you are about to run out of a medication, be sure you get any necessary refills set up before midday Friday. You don’t want to end up choosing between stretching out your pain meds for a few days at half strength versus spending Saturday at urgent care to get a refill.
Be honest with your doctor. And yourself. It is pretty easy to get away with lying to your doctor. In particular, if you say things are going well when they are not. But in the end, the care you receive hinges on the information your healthcare team has to make their decisions. You get no bonus points for toughing it out through side effects or for a quick and compliant office visit. Your input about the treatment is the entire point of the visit. Make full use.
I hope these tips are helpful. If you have questions or other issues you would like to see in future writing, please feel free to leave comments.
Cheers, y’all.
David
Battle Rock Wayside Park. Port Orford, OR.
Patient-ing 101
Thank you for the tips. I have a 34 yo DIL who has spent the last year dealing with BC. Double mastectomy, intense chemo and radiation, beginning of reconstructive surgery. Her oncologist has recommended the Covid booster (rec prior to the new bi-valent). What are your thoughts on using the Covid vax in cancer patients? Thank you.