Cancer Talk: Voices of Hope and Endurance from 'The Group Room,' the World's Largest Cancer Support Group
By Selma R. Schimmel
A diagnosis of cancer is a huge, life-altering event. The moment you hear those words, "you have cancer," everything comes to a halt and nothing is ever the same again. The diagnosis brings with it many different reactions, including disbelief, shock, fear, anger, panic, and confusion. It's like being overcome by an emotional tidal wave. There's a feeling that your body has betrayed you, that every aspect of your life and your dreams is threatened. And until you decide on a course of treatment, you're not likely to feel a whole lot of control over the situation.
A good many of the people who are diagnosed with cancer don't feel sick. I had a breast lump, but wasn't feeling physically ill when I was diagnosed. Either way, it may take some time for the reality of it all to settle in. And then you realize that areas of your life need reprioritizing. The diagnosis adds new stress to your personal, professional, and financial responsibilities. Issues of mortality come to mind and, in addition to your emotions, you must also deal with everyone else's. And somehow in the midst of this emotional upheaval, you still have to keep a clear head in order to make decisions about your medical care. As your health takes center stage, your days may be a series of doctor's appointments, consultations, and continued medical evaluation. You've become a cancer patient.
The way the diagnosis is given can have a tremendous impact on how it is received. Sometimes the diagnosis is delivered by a surgeon or specialist who has no history with the patient. That can make it difficult, considering that the first dose of hope comes, or should come, from the doctor. A doctor who makes direct eye contact and is able to communicate not just with words but also with the warmth of a touch to the shoulder or hand builds trust.
My surgeon knew me, which was all the more reason he was unprepared to diagnose me. His behavior was a dead giveaway. I pretty much knew I had cancer when he called the evening of the biopsy to check on me and find out if my dressing was dry. He suggested I take something to help me sleep and told me to come to his office the next morning with my father and my sister. In that moment I knew.
PAUL: I was diagnosed with colon cancer at age thirty-nine, which is on the young side for that type of cancer. The diagnosis changes your life in just a split second. When you hear those words, "You have cancer," everything stops. Nothing feels real. Then you're awash in powerful feelings. Fear. Anger. Depression. You feel isolated and alienated, out of control, betrayed by your body.
JASMINE: When I first got the diagnosis, I panicked. I arranged my funeral because my two children were too young to do it.
DORA: You wonder, "Why me? What did I do wrong?" You didn't do anything wrong, of course. But you still wonder. And you worry. You can't help worrying.
PRISCILLA: The very first response is disbelief. You say to yourself, "I know this is real, but I can't really believe it." And then the other feelings may come on a little bit later. The reality of my diagnosis really didn't hit me until about two weeks after the end of my treatment. It wasn't until then that I realized, not just intellectually but at every level of my being, what had happened to me, what the situation was. Like many others, I grieved and reacted emotionally after the treatment.
SANDY: I went in for an operation that would determine whether the cancer was malignant or not. My family was afraid that they were going to have to tell me the bad news. As it turned out, I already knew it was malignant when I was brought back to my room, and not because my doctor had told me. My doctor left while I was still in the recovery room, not yet awake. He had told me before the surgery that if it was benign, they would just remove the ovary, but if it was malignant, they would remove everything. Well, when I was waking up in the recovery room, the nurse was calling down to transportation to have someone pick me up. She said into the phone, "We have a total hysterectomy here to be taken back to her room." They had removed everything, so I knew my cancer was malignant. When I got back to the room, my husband's and son's faces were so sad. The doctor had told them and they thought they were going to have to tell me. I just said, "I know."
KARL: I was utterly stunned when I was diagnosed with male breast cancer. I didn't even know men could get breast cancer. I had found a lump near my left nipple when I was in the shower. I thought it was a little fat deposit under the skin, but I showed it to my wife and she insisted that I go to the doctor. Much to my surprise, the doctor did a needle biopsy and within three days, I was in surgery. I was very lucky because we caught it early on.
SLATER: I came out of my surgery and J waited. They told me that they were doing tests and that it would be couple hours before they knew if I had cancer. I was very sick after the surgery; I had some sort of negative response to the drugs they had given me. Finally, the doctor came up and just straight out told me. He said, "You have Hodgkin's lymphoma. If you had to get lymphoma, that would be the kind you would want to get. Not that any of us would ever want to get lymphoma, but ..." All I wanted to do was go home and close the door to my room and never come out.
MONA: I was handed an envelope at the diagnostic clinic that did my ultrasound, and told to walk across the street to my doctor's office with this envelope and not open it. Did they really expect me not to open it? That was the stupidest thing that happened in my life.
BETH YALE (cancer advocate, survivor): When given a cancer diagnosis, you lose all of your control, you lose your feeling of well-being and trust in your body. I felt that I had lost control of every part of my life. I didn't even know if I was going to survive. Someone could tell me that the future was positive, but until I had that feeling within me, until I felt I could be cured or even deal with the disease, I couldn't go ahead with everyday living.
GILA: I was diagnosed about two years ago. I had a kind of a different sort of a case, my tumor came up quite rapidly, it grew very large. This was just before my forty-second birthday. My surgeon was quite blunt with me. I wish he would have taken some lessons in bedside manner. He is an excellent surgeon, but he was blunt. He just said, "You've got breast cancer, and I can't operate." That's it. I tell you, it felt like somebody took a knife and stabbed me in the back. He gave me no hope, no choices.
So I was given neoadjuvant chemotherapy, hoping to shrink the tumor down to the size where it could be operated on. The surgeon just said, "We'll see what happens." That's it, nothing more. As it turned out, I had a wonderful reaction to chemotherapy, so good that when they finally did surgery, there was no palpable tumor left. There wasn't even a microscopic trace of the tumor. I didn't have to have a mastectomy. Even after my surgery, after this wonderful cure happened, he kept his distance. He always looked at things as if the glass were half empty rather than half full. Then he said "When you have your recurrence, we'll do this and that." He just flat out told me I was going to get the cancer again, even after I was cured!
REGINA: As I was going through the many tests necessary to find out how severe it was, I kept hoping to myself that it wasn't going to be that bad, that I would only have a very minimal treatment. It never really hit home, how bad it was, until I had finally had the last test done and I found out I was not going to receive minimal treatment. I really went into a depression.
JOAN: I was told as soon as I woke up from the anesthesia after my biopsy. I had a friend who's an anesthesiologist. He did my anesthesia. As soon as I woke up, I looked at him. He nodded and said, "Yeah, it's Hodgkin's disease." We had already discussed it several times, and I had done some reading, so it wasn't a terrible shock. And I had a feeling that I was so healthy, I was convinced that I was going to be all right. I knew it had gone no further, and the doctors were convinced it had gone no further, so I was sure I would have a very short, easy treatment. That's why the actual diagnosis wasn't that upsetting-I never really accepted that diagnosis, I was convinced right from the start that I was going to be fine. It wasn't until a year later, after I had finished treatment and they did a chest X ray.
When they said, "Oh, we see some enlarged nodes," it suddenly hit me. I thought, "Oh, my God! I've got cancer and I could die!" It took that long before I believed it.
In order to absorb the trauma of a cancer diagnosis, a person may appear to be in denial. However, this kind of denial is really a protective coping mechanism to help us slowly accept what is happening.
HALINA (therapist): Denial is a way to self-protect. It also allows us to get through the treatment. If we were to feel, all at once, all of the emotions that hit us when we get the diagnosis, we would be overwhelmed. So overwhelmed, we couldn't do what we needed to. This kind of partial denial-acknowledging that we have cancer but believing that things will be all right--allows us to do what needs to be done.