Cancer is a long journey. This illness is unchartered territory and you will be uncertain at times, which is frightening. But there are things you can do, including working together with your doctors and caregivers, to improve your situation. If you or someone you love is embarking upon the cancer journey, here are five ways to help make it a shorter and hopefully easier, more comfortable walk:
Get a second opinion
You need someone to lead your care team. Before you go down a treatment path, consult other professionals, seek wisdom from experienced oncologists, and make sure that the physician who becomes your doctor is someone whose medical orders you trust and will follow. The doctor you choose must be certain what your situation is, so they can help you deal with it. Sometimes someone else has more expertise with the kind of cancer you have than the doctor who first diagnoses you. Trusting your care team relieves the burden you carry on this journey.
Keep a diary
You’re going to have many thoughts running through your mind and you’ll want to remember the questions you have for your doctor. So, keep a diary and make notes about how you feel, what you experience with chemo, what effects your medications have upon you. You might also note insights you gather from a support group and use your diary to copy down inspirational quotes. Have somebody with you at your appointments who can help take notes on what the doctors and nurses say. Your diary becomes a record of your journey, but it can also serve as a companion and, sometimes, as a map.
Organize your medical records
Illness complicates every-thing. When we don’t feel well, our minds are occupied, it is difficult to concentrate, and it’s hard to keep things straight and in order. While you keep a diary, it is also important to keep your medical records organized and at hand so that you can refer to the doctors’ and nurses’ notes and find your lab reports. Get yourself a sturdy accordion file or create a binder with page protectors and tabs so that your records are well-organized. This helps you track your progress and makes it easier for caregivers to follow your journey. Make sure the doctors and nurses give you a copy of anything that goes in their file about you. If it’s in their records, it should be in yours because this is your life and your journey. I recommend patients keep copies of lab reports, surgical reports, post-op notes and directions, prescription records, and any other documents their medical team can provide. Bring your organizer/ binder with you to appointments so that you can refer to documents while consulting with your care team.
Talk to your doctor
If you look at my card, it has my home number, my office number, and my cell number. If, G-d forbid, I came down with cancer, I would want to pick up the phone and call my doctor. He’s writing those orders, I think I have the right to talk to him. So, be persistent, don’t just leave a message with a gatekeeping receptionist. Get your answer from the doctor. And speaking as a doctor, I don’t want to find out Monday morning that my patient was in pain on Friday night. I want you to call me and tell me then, when you need me, so that I can help you.
Take precautions with your finances
When it comes to cancer, the expense is mind-boggling. 34% of patients go bankrupt. One day you are going to work every day, putting money away for your 401(k) and planning for summer vacation. Suddenly, you can’t do this, you can’t do that. Illness makes a dramatic change to your way of life and you have to reorganize and readjust everything. Find out what drugs you’ll be put on, what companies make them, and if they have grant programs. Don’t go bankrupt because of this disease. Part of the way my team provides care for our patients is to try to ease the financial burden. We accept all forms of insurance and we have a whole department working on finding grants and special programs.
Finding out you have cancer can be devastating, but there are many new studies, new medications, and alternative therapies. Don’t give up hope and don’t feel helpless. Remember that your life is a longer journey than this period of illness.
Dr. Dennis H. Birenbaum is the founder of Texas Hematology Oncology Centers, which have served the community since 1997. A Dallas native, he trained and taught at UT’s MD Anderson Cancer Center, and started his private practice in the metroplex in 1979. Dr. Birenbaum has opened cancer care centers in Arlington, Carrollton and McKinney. You can reach Dr. Birenbaum at DrB@thocpa.com or (469) 453-5500.