Young Adult Cancer Survivors and Grief

The words "young adult survivor" might make some think this is another variation of a reality TV show, but you know it's not. For someone coming out of the childhood cancer world, you know it's much more than that. In a reality TV show, it's a game. You volunteer to play, you can quit if you want to with little consequence and despite the melodrama, no one dies. This is definitely not true for the childhood cancer survivor experience - no one chooses to play, you can't just walk away, and people do die. You didn't die, but you know others who did. You also know that you didn't survive without paying a price.

The price that you paid to survive involves losses. Losses come in many different shapes and sizes - You might have missed out on playing sports, going to the prom, being in clubs, being the top student in your class, graduating on time, graduating at all, working a part-time job for your own spending money, driving, or combing (or not combing) your hair. You might have lost your boyfriend or girlfriend, your senior (or junior or sophomore) year, the chance at a scholarship, your plans for the future, and the freedom to go and be somewhere without your parents worrying (as much). You lost your old self and felt different than your peers. You may no longer have had the same concerns, values or priorities as your peers. In other words, you lost a part of your childhood. As a result, you made and lost some new friends. Some of these friends didn't just move away - they died from a disease a lot like the one you had (or have). You may have lost the confidence that you will live long enough to grow up. There's other losses for some - a leg, an arm, an eye, the ability to have children in the future, the ability to make the kind of grades you made in the past, physical strength, speed, and endurance, your old image of yourself.

With all these losses there are questions. Why did this happen to me? Why did I survive (so far)? Why did the other person die? How can I look at the world the same? Can I hold on to my old beliefs about life - at least some of them? What will the future be like for me now? How do I live in the shadow of what I've seen and been through? Many of these questions lack good answers and may force you to reevaluate your faith, your relationships, your goals and your outlook on the future.

Growing up - becoming an adult - can be a hard and heavy job even without childhood cancer. Having childhood cancer changes your path, but how it changes your path will be different for each person. The gains and losses will be different for each person. But the fact that there are losses is constant.
With these losses, grief comes. Grief is what happens to you on the inside when you lose anything of importance, and childhood cancer brings losses. That you will have grief of some sort is certain - you don't get a choice (like with having cancer). What you do with the grief is a choice (also like having cancer). When someone gets cancer, one could just say, "I can handle it, it's no big deal," and then do nothing about it. Ignoring cancer would be a bad idea, and ignoring real grief or real loss would also be a bad idea.

So what do you do? You call it what it is (grief) and you find ways to keep it from causing you any more losses - only let it take what it must and what you don't want anyway (still a lot like cancer). There's no chemotherapy or radiation for grief, but there are things people do to keep it from spreading and making them worse - talking, being with people, writing, reaching out to others, praying, realizing what has been lost and what has not been lost, working, playing, thinking, crying, exercising, being alone, being with others, finding a project, feeling the pain, setting new goals. The prescription would be different for each person, and like treating cancer, sometimes you have to find a variety of strategies to fight it - no one way will do it all.

In the most recent Harry Potter book, Harry Potter and the Order of the Phoenix, Harry is angry and upset. He's tired of all the trauma and losses, and his most recent loss experience (at the end of the previous book, Harry Potter and the Goblet of Fire) was the death of a friend with whom he had gone through very difficult times. In the Order of the Phoenix, for the first time Harry sees thestrals - fierce, meat-eating horses. These special horses have pulled the carriages of students to the school each year, but Harry has never seen them before - he had thought the carriages were just pulled by magic. His closest friends still can't and don't see them, but he finds a few friends who, like him, see them very clearly. From one of these friends, Harry learns that only those who have seen death can see a thestral. Harry friend's death has allowed him to see the strange and scary reality of the thestrals. By the end of the book, Harry is able to put some thestrals to good use in a heroic quest, but he is able to use them only because he can now see them, and he can see them only because he has experienced the loss by seeing death.

In the midst of all the losses of childhood cancer, there can be some hard won gains. Some find maturity, wisdom, and perspective that can be beyond their chronological years. Not all, but some. Is it an even trade - deepened perspective and wisdom for a whole host of losses? Not for most, yet the gains can still be real and present. The impact of cancer may affect the choices you make for your future and the impact that you will have on other childhood cancer survivors.
One teenager with cancer said he didn't want to just survive cancer, he wanted to "kick its butt." He did. He later wrote of a fellow young adult with cancer who eventually died after a long, up- and-down struggle. Because of how she lived before her dying, he wrote that she "gave cancer a sissy name." Both saw what was lost but didn't let the losing be the last word. They both made the choice to survive for as long as they lived, or maybe it was to really live for as long as they survived.

The content of this article was contributed by Greg Adams, LCSW, ACSW, CT- Director, Center for Good Mourning, Arkansas Children's Hospital. The article was first published in the Summer 2004 on the Beyond the Cure website for survivors of childhood cancer.