Kevin explains the delights of being both a cancer patient and an adult.
Kevin Berry is an 13-year mantle cell lymphoma survivor, in his third remission. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, Taking Vienna. He lives in Central Florida with his wife and adult children.
There's a new buzzword I'm seeing a lot lately. It's the term "adulting." As in, "Please don't make me adult today." Turns out, being a cancer patient is pretty much the ultimate experience in adulting. It would be nice if the world, the medical machine and life in general gave you a break just because you have cancer.
Or, if you could, just curl up, suck your thumb, and let Daddy take care of the monster under the bed.
Instead, cancer victims find out very quickly that no one outside their own close circle of family and caregivers, take responsibility for making sure that each patient gets individualized, attentive, specific care.
I’ve been fighting mantle cell lymphoma for more than a decade, and over that time, I’ve counseled dozens of new patients. My top advice to them, or their direct caregiver, is that YOU have to be YOUR number one advocate. Insurance reps process hundreds of claims every day to pre-set rules.
Appointment clerks schedule dozens of appointments every day, constrained by overburdened doctors and arbitrary computer programs. Harried doctors are forced into seeing too many patients over too many hours. As in any service business, you can become a faceless number in a long queue of sad, sick, people.
One of the most insidious ways this affects your health is playing "the waiting game." You have a symptom, the doctor has ordered you to "call immediately if this happens." You call, you wade through the electronic operator, eventually get to a voice mail box. You leave an urgent message, then wait. A few hours later, you call again. Then the office is closed. Finally, the next day, you talk to a nurse, who takes a note for the doctor. Hours, or maybe a day goes by. You call back, leave a message. Later that day, you find out the doctor sent a note to the nurse, who's off that day. They order a prescription. You wait. Hours later, you call the pharmacy. They're out of the medicine, but will have it in tomorrow. By this time, the symptom has either passed, or you're in the hospital. This little drama has been repeated, dozens of times, during my years of cancer treatment.
How do you change from being a passive victim, to a proactive self-advocate? Well, it's the little things that matter. Here are some tips I've picked up along the way.
First step: Differentiate. Instead of being part of the herd, stand out. Usually, frustrated people do this in a very negative way. Anger, shouting, abusing the staff. Take an uncaring system, add in desperate, sick people, often on steroids, and that reaction is very understandable. The better way is to become a person
. Whether on the phone, or in person, open a conversation. Show the human on the other end that you are interested in them
as a person. Ask about the picture of their child on their desk. Ask what state they are in and mention the weather, or a trip you took there. Put yourself in their shoes. They are poorly paid, overworked and deal all day with upset, frustrated people. A moment of kindness on your part can help them to see your problem, and go that extra step to help you.
Second step: Don't take the first answer, if you see it starting the "waiting game." If it's important enough, call different phone numbers (or press other buttons on the electronic operator) until you get a human, and ask them not to transfer you to a voice mail. If you've reached the "no" stage, politely ask to speak to a supervisor or office manager, and assure both employees you know they are just doing the jobs as they've been directed to. Explain your specific problem, how it worries you from a symptom (or financial, or travel, or loss of work) standpoint. Let them know that you
know you're asking for something extra, and appreciate it. Another tactic in the game: when the doctor gives you the throwaway statement about calling if there's a problem, push it back on them. "Doctor, I'm sure you're not aware of this, but the last few times I've called in, it's taken three or four days before my problem was resolved. Is there some other way to handle my symptom if it comes up?" Doctors work in a vacuum, and rarely understand the patient's ordeal in simply getting hold of them on the phone.
Third step: If you have to, go there. Drive to the office, speak to the receptionist (with whom you've built a personal relationship by being a pleasant patient interested in them), and tell them you're willing to wait, even for several hours, to be seen or for the message to come back from the doctor. Follow steps 1 and 2 above, but sit it out. A patient in a waiting room, hour after hour, is harder to forget about than an email or message slip.
Fourth step: Go somewhere else. For long distance issues, if you have a problem with a doctor's office, call your insurance company and ask them to intervene, while you wait on hold. For insurance problems, or at mega hospitals, ask to speak to their patient advocate. For medical issues, if you have to, go to a walk-in clinic or even the emergency room, and ask them to see you and consult with your doctor. Yes, this can cost more money, but at least you've doubled your chances of having your symptom evaluated. If you go this route, though, you've got to be a very informed patient. Know your meds, your normal blood work numbers, what's been done in the past for this, and what your oncologist was concerned about.
Mainly, this is about having an "adult" sense of time passing, and evaluating how urgent your situation is. Whether it's a problem with the bureaucracy or your medical care, keep notes. Write down everything that happens. Seeing the passage of time on paper and being able to clearly recite the steps that got you to this point, are valuable tools in being your own advocate.
Besides the other wonderful blogs on curetoday.com
I hope you'll also visit my Taking Vienna
site. That's where I talk in a much more personal way about my battle, my family and friends and other random and odd musings.