There are few things in this world harder to hear than, “You have cancer.” I was in a hospital bed, waiting to have what I thought would be a cystoscopy, which is a procedure where a scope is put into the urethra so that a doctor can see into the bladder.
The day before, a CT scan had shown a mass in my bladder and the doctor told me that it could be a blood clot or a cyst or a tumor. The cystoscopy would help to determine a diagnosis. My doctor’s partner, however, was on call the next morning when the procedure was to be done, and as I was waiting outside the OR, he informed me that I was having surgery (not just a cystoscopy) and that I had cancer. He would remove the tumor and have it biopsied.
It was the first time anyone had said the “c” word, and the feeling is almost indescribable. I was alone, uninformed, facing a hostile and cruel man who pressured me to sign an “informed consent” form giving him permission to operate on me. I couldn’t breathe. I couldn’t think. I was angry and frightened. My world was a flashing red light and an alarm so loud I couldn’t hear.
Panic is not conducive to thought or consideration. It’s hard to hear when the air is rushing in your ears. Time slows and an oppressive now weighs down on you, bricks on your chest. “This is not happening to me” meets the cold reality that something is definitely happening.
It doesn’t have to be this way. There are kind doctors and there are kind words. But, I doubt that anyone anywhere has ever heard the words, “You have cancer” without the red lights and alarms.
What happens next? What do you do once you’ve got a diagnosis? Here are some ideas, in no particular order, based on my experiences and the experiences of some of my friends who have cancer.
Become your own advocate. If I could do it over again, I’d tell my doctor’s partner “No.” When you’re in the hospital it is very, very difficult to take charge, but I know now that I could have simply said, “No! Back away from my bed. Take me back to my room. I’ll wait for my real doctor and talk to my family before signing your forms.”
Be informed. The National Comprehensive Cancer Network is the single best place to begin researching your cancer and its treatments. The group brings together a variety of practitioners to establish clinical guidelines for cancer treatment. I was shocked to learn that fewer than half of urologists follow established guidelines for the treatment of bladder cancer, and it was consoling to have confirmation that my doctor was following established protocol. It is a straightforward process to find out these guidelines. Go to the website, locate your type of cancer and download or print the guidelines. Take it with you to your next doctor’s visit.
You are not a statistic. When I finally got my pathology results I went directly to the “Survival Rates by stage” page for bladder cancer at the American Cancer Society website. I wanted to see the numbers, the facts, the future. It’s human nature to do this, and for me it was part of the process of wrapping my mind around the diagnosis. But, remember, statistics apply to populations. They do not apply to you specifically. Survival rates take into account the numbers of people still alive after five years (or 10 years or whatever the parameter they give). If after two years a person dies from a heart attack or in a car accident, their death is still reported. They could have refused treatment or had other illnesses. My best advice here is to look at the numbers, because I know that you have to, but then move on. Turn your attention to your health and forget about statistics.
Find a good doctor. It’s hard to find a good doctor because it’s harder than you might think to define “good doctor.” You need someone who knows what they’re doing, who’s skilled at what they’re doing and who you can communicate with. Two things signaled to me that I had a good doctor for me. First, he mailed me a copy of the NCCN guidelines for bladder cancer before our first meeting. Second, he relaxed and got comfortable when I told him that I had questions, despite the fact that I had about five pages of single-spaced, typed questions. I was lucky that he was on-call at the hospital when I went to the ER. How do you find a good doc? I’m not a fan of the websites that invite consumer feedback on docs. Instead, I recommend America’s Top Doctors to find the best of the best. If you ask for recommendations from others, ask nurses. Nurses know.
Get a second opinion. Your life, your wellbeing, and your health are worth getting more than one opinion about diagnosis and treatment. It’s worth spending some money, traveling and doing the legwork for a second opinion. Many of the famous treatments centers, the Mayo Clinic, the Cleveland Clinic and so on, are used to offering second opinions. In fact, they make it very easy to do. For my cancer, the most important thing was getting the biopsy slides read again. The pathologists at the University of Chicago confirmed my pathologists’ readings and Dr. Steinberg, a nationally known expert on bladder cancer, gave the thumbs up on my doctor’s treatment plan. I paid out of pocket for the opinion because my HMO wouldn't pay, and it's the best money I have ever spent.
Find a support group or a counselor. Having cancer is a big deal. It rocks your world. Your family and your friends may or may not rise to the occasion. Even if they do, they probably don’t know what you’re facing. I remember the day I got home from the hospital I was obsessed with a pain in my leg, and I was terrified that cancer had spread to my bones. My husband had no idea how to respond to that, and why would he? My support group immediately knew how to respond because everyone in the group had a similar experience. It is such a relief to be around people who know exactly what you’re feeling. If you’re in the south suburbs of Chicago, come join us at the Cancer Support Center in Homewood or Mokena.
Start a blog. It’s very helpful to have a place where friends and family can check in on your prognosis and treatments. It frees you up from having to write frequent emails and it allows your friends and family to read about your health when they’re ready and in a good frame of mind. It’s also a good place for you to keep a timeline of your experience. Of course, you must determine the level of privacy that you want to maintain. A friend who has recently been diagnosed with cancer is using the Caring Bridge website, which allows privacy controls and is especially for people with cancer and other diseases.
Let people help you. The truth is, everyone feels out of control when cancer moves into the neighborhood, and it feels good to contribute. If friends and family offer their help, let them provide you support. However, direct them where you need them. Let them know how and when they can help. Consider letting a close friend or family member (outside of the immediate family) organize the volunteers. If you have children, you’re almost certainly going to need help with running errands, cooking and cleaning, providing entertainment and babysitting. Let a friend help to schedule meals and play dates.
Be kind and gentle with yourself. Lower your expectations for yourself. This isn’t the time for tough love. This is the time to dial down all the guilt and all the “shoulds” and all the crap. If you don’t want to talk to people, don’t. If you want to cry, please do. There is no right way to deal with cancer. Take it one day at a time. It’s normal to be angry and depressed, worried and fearful. Some people discover their inner “Mary Sunshine” and that’s good too. Some days the world is a beautiful place and sometimes you wake up in hell. Let yourself be.
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