Post-Traumatic Stress

During treatment, patients are engaged in an arduous battle against their cancer. They direct all of their time, energy, and strength toward dealing with immediate survival. But when the IVs stop, the drugs aren't necessary, and the scars heal, many survivors come to realize there is also an emotional price to pay. Just as many soldiers come home from war with "shell shock," many survivors discover that being free of cancer does not mean that your emotions are cancer-free.

Some feelings may be set aside while you cope with treatment, but when treatment ends, you are left to come to grips with the experience and what it means in your life. That can be very difficult. Family, friends, and doctors may brush off your concerns, saying it's time to "get on with your life." You may think that ignoring the feelings will cause them to disappear. Unresolved emotions don't just vanish—they may grow stronger and erupt unexpectedly.

I had Hodgkin's when I was 15. I tried so hard as a freshman in college to put it behind me and get on with my life. It just didn't work. Next to treatment, that was the worse year of my life. It showed me that if I didn't deal with it consciously I was going to deal with it subconsciously. I had nightmares every night. I'd wake up feeling like I had needles in my arms. Once I started dealing with it, things improved. I had a wonderful English composition teacher that year. I really spilled out my soul to him in writing that year, and he held it gently. I've just written him a thank-you note telling him that upon rereading my journal, I came to realize how much I put into his hands that year.

—

I had cancer when I was 19, and it recurred at 21. I have frequent nightmares. I sit up in my sleep screaming. My fiancé tells me about them in the morning--I usually don't remember. I also wake up if any sound reminds me of the hospital. For instance, that crinkly sound the hospital beds make when you move reminds me of getting transfusions. If I hear any crinkly sounds in the night, I wake up really scared. This Halloween I went into a haunted house and had an anxiety attack. The flashing lights disoriented me, and I felt like I was in the hospital on Ativan. I started breathing fast and my heart raced. I had to leave and go home.

According to the Diagnostic and Statistical Manual of Mental Disorders IV (1994), post-traumatic stress disorder (PTSD) may be diagnosed if the following criteria are met:

• The person experienced one or more events that involved threatened death or physical injury, or a threat to their own or others' physical integrity. These parameters specifically include learning that one (or one's child) has a life-threatening disease.
• The person's response included intense fear, helplessness, or horror.

In addition, people with PTSD tend to have intrusive recollections or dreams of the event, feelings that the trauma is recurring (flashbacks), and intense distress if reminders of the trauma occur. PTSD can also cause survivors or members of their families to develop memory loss or avoidance of loved ones or certain situations to try to protect themselves from being overwhelmed. Some people who suffer from PTSD are unable to have loving feelings towards others and have difficulty imagining a future that includes marriage, a family, or a normal life span.

Other symptoms of PTSD are:

• Difficulty falling or staying asleep
• Irritability or angry outbursts
• Difficulty concentrating
• Hypervigilance (feeling constantly "on alert") Exaggerated startle response

Parents of survivors of childhood cancer also can have symptoms of post-traumatic stress syndrome.

About 2:00 AM, I woke up and my husband was sitting on the edge of the bed crying. I asked him if everything was okay and he said yes, so I drifted off again. A little while later he woke me up and asked me to stay awake with him. He was sweating, breathing fast, and his heart was racing. He said he had had a flashback about our son's cancer and was afraid he was losing his mind. I just held him and told him that our son was okay. In about half an hour he was calm again and we both went to sleep. The last few weeks it's been pretty obvious that he was suffering from other than ordinary stress, and we've been discussing him getting some help. My gut tells me this is urgent.

PTSD in survivors and their parents has not been exhaustively studied. One study showed higher levels of anxiety in mothers of younger survivors than in school-aged and adolescent survivors themselves. However, a recent study of 78 young adult survivors showed approximately 20 percent had PTSD, higher than the numbers of mothers of young survivors in the earlier study. In addition, among all groups studied to date, survivors and parents tended to have at least some of these distressing symptoms of post-traumatic stress, even if they did not have enough to warrant a full diagnosis of PTSD.

A year or so after treatment, I was watching one of those St. Jude's specials (I avoid them now). When one of the children's IV pumps beeped, all the blood left my head, I got terribly dizzy, and I almost passed out. What a visceral reaction! And I thought I had adjusted well.

Susan Nessim, in her book Cancervive, describes her strong emotions years after her treatment for rhabdomyosarcoma:

Although I am more than fifteen years past treatment, I still can't enter a hospital without experiencing strong physical reaction to my memories of cancer treatment. Whenever I enter an oncology clinic, I break into a cold sweat and my heart starts racing. The sight of alcohol pads and the sight of butterfly IVs never fail to make me nauseous.

One of the ways I faced up to my own delayed stress reactions was by keeping a journal. The process of writing helped me crystallize my thoughts and size up my emotions. Counseling helped, too; through it I was able to take care of a lot of unfinished business.

As for my aversion to oncology clinics, I knew that was going to be a tougher nut to crack. I found it helps to have a friend or family member accompany me to appointments. I feel reassured by having someone along I can talk to when I feel anxious, or whose hand I can squeeze when I'm especially edgy. Also, I've learned how to "condition" myself by repeating in my mind during my appointments that I'm there only as a visitor, not as a patient.