Coping with Difficulty
Post-Diagnosis: 7 Tips for Waiting on the Doctor
“For many patients, after an initial diagnosis, getting an appointment to see a decent specialist can take several weeks, and that’s if you’re lucky,” says Joni Aldrich, author of the new book Connecting through Compassion: Guidance for Family and Friends of a Brain Cancer Patient. “It can even take much longer. Your nerves will be on edge, and you’ll likely jump at the sound of the phone ringing. It can be an agonizing, frustrating, and helpless time for patients and their families.”
In 2004, Aldrich herself received the news that her husband, Gordon, had a tumor in his spinal column. It’s a day she vividly remembers. “It was the middle of a Friday afternoon,” she recalls. “Our lives had been changed forever, and we wanted information fast, and to start fighting Gordon’s cancer right away. To add to the pressure, he was in terrible pain that needed immediate attention. After hours of bargaining and begging, we were told that our earliest chance for an appointment was still four weeks out. The thought of having to wait that long while a tumor continued to grow in my husband’s body was mind-blowing and unreal to me.”
While Aldrich advises to do everything that you can to expedite your consultation with a good specialist—no matter how many strings you have to pull or people you have to bother—she also recommends finding ways to stay productively occupied in the days and weeks of waiting. Here are her seven suggestions for keeping busy and being proactive while you “hurry up and wait”:
1) Research the basics. You’ve left your doctor’s office with a diagnosis but not much more, and the fear of the unknown can be overwhelming. If you haven’t requested copies of all medical tests already, now is the time to do so. This is the key to doing your own research before meeting with your medical specialist. The Internet can help you translate the big words that we laymen may not understand on the report. Create a long list of questions for your doctor to cover at your appointment. But Aldrich warns not to get too caught up in “Dr. Google.” There’s a balance—you may find out more than you need or want to know.
“There’s something to be said for going into your first appointment armed and ready, and doing a little research of your own can help you to feel equipped for the next step in your journey,” explains Aldrich. “You may be walking a line between ‘TMI’ and your own safety zone, but one thing is for sure—a good specialist will appreciate the effort you’ve made to get information up-front. If you don’t want to review all of the medical mumbo jumbo on the report, skip right to the summary on the back. Use the search engine on your computer to find out more. And be sure to write down the details. If some of the facts you uncover are a little scary, remember that every patient is different.”
2) Review the credentials of the medical facility (and potential second opinion facilities, too). Once you have a better understanding of the medical test results, you can then begin to search online for the best medical facilities for your particular diagnosis. The simple truth is that it may not be the one you’ve been referred to; that may be only a starting point. Aldrich says that “location, location, location” isn’t just the credo for business and house hunting. Just because one hospital is renowned for treating heart disease, you can’t assume that it’s rated well for neurosurgery. Read up on the annual caseloads, if you can find them, and search around for recommendations from patients who have actually received treatment at those facilities.
“One of the most important things you can do in this phase is to network,” asserts Aldrich. “Ask everyone you know about their own experiences with a local medical facility—whether it was a positive or negative experience. Many people stop short of simply asking for an honest evaluation, when it is the very information that could save their lives.”
3) Call on your A-team. Even though the wheels may seem to turn slowly before the first meeting with your medical team, once you meet with them things can heat up quickly. Aldrich stresses that it pays to be prepared. Are you going to need some help with childcare so you can go to appointments? What about your pets? Can someone pick up your mail? How will you pay your bills if your treatment is done out of town? These things may seem insignificant now, but having them handled can be a major stress relief in the midst of treatment. Friends and family will want to know how to help, and these tasks are the perfect response for you to give them when asked.
“While my husband was undergoing cancer treatment 800 miles away from our home, we were so blessed to have a circle of friends and neighbors to help us with cutting the grass, forwarding mail, and a myriad of other needs that seem small and insignificant compared to cancer treatment—but are huge in the overall ‘life goes on’ scenario,” Aldrich recalls. “Whether you need help immediately or never need it, it’s comforting to know that a plan is in place. And it goes without saying that you need to let family and friends know to be ready if you need them, even if it’s just for prayers and comfort.”
4) Keep up with your homework. Since you never know what that first appointment will bring, it’s important to be as prepared as possible ahead of time. If you believe there is a chance the patient will be admitted, you may want to pack a small bag with necessities ahead of time to have on hand. Spend some time compiling lists of medical information, such as an up-to-date list of current medications, insurance provider information, or a detailed write-up of symptoms and any previous treatment. Actual housekeeping isn’t a bad idea either. Having a clean home is essential when you are caring for a sick patient, and not having to come home to a pile of laundry after a hospital stay will give you peace of mind as well. Don’t forget the yardwork.
“My motto when it comes to scenarios like this is that it’s better to have it and not need it, than to need it and not have it—especially if the hospital is a lengthy commute,” says Aldrich. “In the days leading up to your first visit, you might want to make a few meals to freeze, or make sure the grass is cut. Staying busy will keep your mind from focusing on concerns that you can’t do anything about yet. And it will allow you to focus fully on the task at hand when the time comes, instead of worrying about small, ‘housekeeping’ details.”
5) Quit procrastinating on the paperwork. No one likes thinking about documents like their will, living will, or healthcare power of attorney, especially when the shock of a diagnosis is still fresh. Most people look at these tasks negatively and so they avoid them. But Aldrich says that, instead, it’s important to think of it as something that you need to do for your family. It’s one of the things you can control and do proactively during this time. Laws vary by state, so be sure to discuss specific requirements with an attorney or clerk of courts office. And after you’ve completed your documents, store them in a safe place. Make sure that those closest to you know where they are and have a general idea of what your wishes are.
“If you’re in a big hurry, there’s a document called ‘Five Wishes’ from an organization called Aging with Dignity,” Aldrich explains. “It covers your healthcare power of attorney, the kind of medical treatment you do or don’t want (including extreme measures), and many other pertinent decisions. It can be filled out in 15 minutes, but does have to be witnessed. It is, however, much faster and easier than doing the legal documentation. As a last resort, write down a list of your basic wishes and have it notarized.”
6) Give yourself a little reassurance about your insurance. It's no secret that medical treatments can be financially devastating if you don’t have cooperation from your insurance company. And receiving upsetting financial news at the peak of an illness or mid-treatment can cause unnecessary stress on both the patient and the caregiver. Take some time to get on the phone with your insurance provider before you begin any treatments or medical visits. Ask questions, get a detailed listing of benefits, fill out any necessary paperwork, and figure out what your up-front costs may be. Knowing this ahead of time will allow you to make a financial plan, or identify sources of financial aid.
“A call that takes 10 minutes to make can save you thousands of dollars and hours of unnecessary stress,” explains Aldrich. “While the patient’s needs must always come first, you’ll benefit in the long run if you prevent any future surprises.”
7) Be prepared for an emergency. Even though your scheduled appointment may still be a few days (or even weeks) away, it’s entirely possible that you may find yourself in a situation where the patient’s condition worsens quickly. In these types of situations, Aldrich says that you need to be prepared to take immediate action. It’s a tough decision, because you may be in an emergency room for hours on end, and hospitals contain a high volume of germs that you don’t want the patient unnecessarily exposed to. However, there are times when it will be unavoidable, and you should be prepared to take all of the medical test results, medications, and information that you have already accumulated from the general practitioner with you.
“If you must go to the emergency room, try to pick your time wisely,” Aldrich recommends. “If possible, avoid going during peak hours, which typically occur on Friday and Saturday nights. If the patient is at risk for disease, stop by the pharmacy and pick up a facemask before you go. Use plenty of hand sanitizer. And when you check in at the desk, let them know your concerns for the patient’s welfare. And—by all means—carry a good book.”
“Unfortunately, our story did not have a happy ending,” Aldrich concludes. “Gordon’s tumor turned out to be cancerous, and he died two years to the day after diagnosis. And while he is no longer with me, the lessons I learned from our experience ring true to this day. No matter what battle you may be facing, the pain of waiting and not knowing is still the same. Take it one day at a time. Control the things you can control, focus on the day ahead, and keep a positive attitude. Your appointment will be here before you know it, and you’ll be ready for it when it’s time."
Joni James Aldrich is the author of several books including the new Connecting through Compassion: Guidance for Family and Friends of a Brain Cancer Patient, and Understanding with Compassion: Help for Loved Ones and Caregivers of a Brain Illness Patient. For more information, visit www.jonialdrich.com.