Childhood Cancer

Childhood Cancer Survivors

Signs and symptoms

Chronic fatigue can interfere with all of the activities of daily life. It can wax and wane or be constant. Following are some of the signs and symptoms of fatigue:

  • Whole body tiredness, weariness, or exhaustion even after sleep

  • Mental and emotional exhaustion

  • Difficulty concentrating, remembering, or completing tasks

  • Confused thinking

  • Decreased ability to work, do regular activities, or start new projects

  • Decreased interest in enjoyable activities

  • Feelings of sadness, frustration, or irritability

  • Decreased sexual desire

  • Spending more time resting or sleeping

Chronic fatigue is the worst late effect I’ve had to deal with after treatment for Hodgkin’s. I’ve had it for 22 years. I used to be a very active person—give me a list of 100 things to do and I’d do 110. Now, I nap 2 hours every single afternoon. By 2 p.m., I shut down completely—I can’t move anymore, I can’t think anymore. So I just go to bed. My husband can tell as soon as it starts because I start to mix up my words and my speech slurs. But, you know, I try to appreciate all the things I can do: I can see, hear, taste, walk. I try to focus on all the things I can do, rather than fixate on the things I can’t.

• • • • •

I was diagnosed in August 1990. For 9 years I have felt fatigue. I just thought that I was lazy. Over the years I have developed such a guilt complex because I tire easily. I have seen my husband suffer and give up so much because of me. Cancer treatment left me infertile. Sex drive is right out the window also.

Friends cannot seem to understand my fatigue, and my employer is beyond understanding me. I even work in a hospital. I have tried to work full time but just cannot do it. I want to, but the body just plays out too much. Bedtime is 8 p.m., just to make it through the next day. I have cut my hours back to 3 days a week. Well, I need every other day just to recoup from one. I feel like I am always trying to come up with some sort of an excuse that they would understand, other than I am tired.

Chronic fatigue is very hard on relationships with loved ones. You may not have the energy to go out with your spouse to have dinner or visit friends. Your interest in sex may disappear, or you may just be too tired by the evening even if you are interested. You may not have the energy to take your children to the park or play in the backyard. Your friends may not understand that you can look great but have no energy. If your fatigue forces you to work less or stop work entirely, your income may decrease. You may feel guilty or lazy. All of these worries—big and small—can take a toll.

It’s hard explaining even to dear friends that I just don’t function the way I did pre-treatment. I’m still trying to find that balance between challenging myself and knowing my limitations. If anything, I drive myself way too hard.

I’m a rather private person. I don’t like telling people that I’ve had cancer and that cancer still has an effect on my life. People say things like, “But you look so healthy. And you’re done with treatment. Why don’t you just get over it?” Well, I’m sure if I could “just get over it” I would. But it’s not that easy.

I do get angry when people who know I’ve had cancer expect me to perform like any other 22 year old. I know they can’t really imagine what I feel like. But I’m not so sure I want to tell everyone what it does feel like. It’s a bit of a bind when you look healthy and desire to work hard, but you just don’t have the stamina that you used to.

Many children also suffer from fatigue long after treatment ends.

Many years after her treatment for neuroblastoma, Paige still has fatigue and a low energy level. She is very tired at the end of school and her activity of choice is always TV or Gameboy ® . She plays soccer and basketball, but she doesn’t have a lot of stamina and gets frustrated.

Survivorship healthcare professionals have observed that children with cognitive changes, in particular, seem to have more fatigue.

My daughter was treated on a high-risk ALL protocol that included 1800 cGy of cranial radiation and 17 doses of intrathecal methotrexate. She had the radiation when she was 3 years old. Among her many side effects is profound fatigue. Through elementary school and middle school, she would come home from school and go straight to bed for a few hours. We had to wake her up to eat dinner. It was worse in high school, so she had lots of testing done, and they found out that she was mildly growth hormone deficient and also had the poorly understood post-radiation fatigue. The doctor told her that her brain had to work so hard to process input from the world around her that it just got very tired very fast. After she went on growth hormone and also a drug called Provigil ® (used for people with narcolepsy), she could stay awake long enough to eat and do homework. She still sleeps 10 or 11 hours a night, but she is able to stay awake all day. It’s been 20 years since the radiation, and sadly, we think this late effect is a permanent one.