Although survivors were able to grab the ultimate “gold ring”—life—they often suffer losses in the process. Losses come in all shapes and forms and may emerge or continue to exist for many years, or even a lifetime. A universal loss is the sense that the world is a safe place. Childhood cancer robs the entire family of that blissful belief in the natural order of things—that children will have happy and carefree childhoods and that children never die before their parents.
Treatment for childhood cancer also can result in the loss of abilities, life prospects, skills, or body parts. A star baseball player can be relegated to the bench. A skier might lose his leg. An “A” student might discover when she returns to school that she is no longer gifted in mathematics. And grief over the loss of normal development opportunities, such as missing the time when teens start to date or play competitive sports on organized teams, are common. These losses put survivors out of step with their peer groups, which in turn limits opportunities to develop friendships. Thus, survivors must cope not only with physical changes, but also with the alteration of their self-image.
I was 16 years old and on the national championship hockey cheerleading team when I was diagnosed with osteosarcoma. I never went back to high school, and I’ll never cheerlead again. I had an allograft and a total knee replacement. I can’t kneel, sit cross-legged, or bend my knee all the way.
The feelings most often associated with the normal grieving process are denial, anxiety, fear, guilt, depression, and anger. These completely normal feelings are sometimes viewed by others as a problem when they are actually a natural response to a life-changing event. It is important and necessary to acknowledge these feelings in order to deal with what cannot be changed and to make the most of your life, even if it has changed.
In the hubbub of packing this week for vacation, I came upon Nicholas playing in his room with Mr. Potato Head ® and his potato head pals. The Big Spud was lying down, without arms or feet, and Nick was crying. I asked what was wrong, and Nicholas said he and the little pals were crying because “Mr. Potato Head ® died since his bone marrow transplant didn’t work right.” Damn, a 5-year-old’s play pals shouldn’t be dying from failed bone marrow transplants. I hate this disease.
Part of coping with grief involves sharing it with loved ones. In our society, expressing these feelings is often socially unacceptable. Survivors and parents struggle to balance gratitude for life with sadness over the losses. However, parents and survivors may not view these issues in the same way, and conflicts may arise, creating an inability to rely on each other for support.
I feel that having a life-threatening illness, being treated for it and surviving, can trigger strong emotions—anxiety, fear, anger, and sadness. If these feelings aren’t acknowledged, addressed, and treated, they can over time evolve into more chronic problems like panic disorders and depression.
Most of the psychosocial literature says that survivors as a group are pretty well adjusted, that we marry, work, and raise children if we can have them. And that most of us seem to have come to some terms with our illness. But I have to say that my experience, both personal and from having talked with so many survivors, differs. It is not that we aren’t well adjusted, but that we have paid an emotional price for surviving and that we seldom meet non-survivors who get it. To the world of non-survivors, we present a face that is strong, mostly good natured, thankful, and grateful. With other survivors we are able to articulate our fears, anger, and sadness.
Relatives, friends, and professionals who work with families of people who have survived childhood cancer need to recognize that grief over loss is very similar to the grief one feels when a loved one dies. They need to listen, understand, and support the legitimacy of these feelings. Suffering is diminished when it is shared.
Parents of children who were treated at a very young age have a need to grieve about things their children may not even be aware of.
I think the little kids with significant side effects soon learn they are different but don’t remember who they were. Well, we do. We remember those carefree days with kids who glowed with health and good spirits. We know the price we paid, and it’s incredibly painful. Yet we also know how lucky we are and feel that we should be grateful instead of grieving. It’s a hard road.
In some cases, radiation at a young age can cause a change in personality and capabilities, so it may seem as if the child you knew and loved disappeared, and a new child replaced him.
It’s so hard to talk about losing part of who your child was. I keep feeling I should be grateful for her life, but I’m grieving—by myself—for her losses. And it’s not getting any easier. I have huge worries about whether she will ever be able to live independently. And I’ve never talked to anyone about it, nor have they asked. I mean, what a thing for a parent to deal with. We went from having a bright kid full of promise to a kid with major problems with basic life skills. I dreamed she’d go to college, maybe get married, move away, take care of herself. And now I don’t know what’s going to happen.
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My son has several disabilities from his treatment for a brain tumor. I don’t know how much will improve or get worse. I lost the child I had before. I told a friend once that the child I brought into the hospital was a different one than the one I brought home. It shocked her, but I realized I really needed to grieve that loss. I’m not saying that I love him less, just that we all suffered a big loss.
You may find that at different ages, you view and feel your losses differently. A child of 10 may understand that his learning disabilities were the price he paid for cure from cancer, but a 20-year-old in college will probably have very different feelings as he is making career choices that may be affected by his disabilities. Similarly, a teenage girl may view potential infertility differently than an adult woman in love who is discussing marriage and contemplating having a family.
You can grieve fully, but later, still be stunned on occasion by a wave of grief. Everyone gets blindsided by a reminder of the loss. Stressors that can cause feelings to erupt include anniversaries, routine medical tests, or even a smell. Returning to the clinic for an appointment, developing an illness, or discovering a late effect can arouse strong feelings. The upsurge of physical or emotional responses doesn’t mean you have to go through the whole process again, but it can feel overwhelming.
Survivors and their families describe a multitude of ways to work through the grief associated with childhood cancer. Some talk with family members and friends; others share their emotions by asking for hugs or a shoulder to cry on. Some join support groups (in person or online) to talk about their feelings with others in similar circumstances. Others prefer individual, private counseling to discuss their grief and feelings of loss. Some survivors describe taking better care of themselves or doing pleasurable activities whenever they felt sad about the changes in their lives. Others talk about the importance of their faith or religion in getting them through the tough spots. You can also ask loved ones for help during difficult times.
Table of ContentsAll Guides
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating the System
- 5. Staying Healthy
- 6. Diseases
- 7. Fatigue
- 8. Brain and Nerves
- 9. Hormone-Producing Glands
- 10. Eyes and Ears
- 11. Head and Neck
- 12. Heart and Blood Vessels
- 13. Lungs
- 14. Kidneys, Bladder, and Genitals
- 15. Liver, Stomach, and Intestines
- 16. Immune System
- 17. Muscles and Bones
- 18. Skin, Breasts, and Hair
- 19. Second Cancers
- 20. Homage
- Appendix A. Survivor Sketches
- Appendix B. Resources
- Appendix C. References
- Appendix D. About the Authors
- Appendix E. Childhood Cancer Guides (TM)