The following excerpt is taken from Chapter 1 of
Childhood Cancer Survivors: A Practical Guide to Your Future
by Nancy Keene, Wendy Hobbie & Kathy Ruccione, copyright 2000 by
O'Reilly & Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
According to Webster's New Collegiate Dictionary, transition is a "passage from one state, stage, place, or subject to another." This definition expresses very well the road that survivors of childhood cancer travel, from active treatment to off treatment, and then from off treatment to long-term survival. The definition also fits because "place" changes as the adolescent moves from pediatric healthcare overseen by parents to self-designed and self-monitored adult care.
Individuals do better with transitions if a period of planning occurs with the child or teen and family. The transition should be acknowledged by all healthcare providers, and psychosocial and educational aspects of survival should be addressed. For instance, if a teen's medical care is shifted from the pediatric clinic to the adult clinic without discussions about his understanding of his disease, he may still have only the information that was given to him when he was 9 years old. This is hardly the amount or depth of information needed by a survivor entering adulthood, who will need to advocate for his own healthcare and make wise lifestyle choices.
The following sections discuss transitioning off treatment and transitioning from teen to adult healthcare.
The last day of treatment is a time for both celebration and fear. The protocol schedules and frequent appointments provided reassurance and structure. While most families are thrilled that the days of pills and procedures have ended, some fear a future without powerful medicines to keep the disease away. Concerns about relapse are an almost universal response and family members often feel vulnerable after active treatment ends.
Many parents and survivors describe ending treatment as almost as wrenching an experience as diagnosis. Families begin to experience the gamut of emotions--from elation to terror--months before the final day.
I had a lot of anticipatory worry--it started about six months before ending treatment. By the last day of treatment I had been worrying for months, so it was just a relief to quit.
I expected to feel a profound sense of relief when treatment ended. The six months prior to ending treatment I felt almost euphoric. But when she was finally finished, I began to be unexpectedly fearful. I just started to worry. I didn't really relax until she was a year off treatment. Now weeks go by without me thinking of relapse, although I still think of the years of treatment frequently.
We were thrilled when treatment ended. I knew many people who felt that celebrating would jinx them; they just didn't feel safe. Well, I felt that we had won a big battle--getting through treatment--and we were going to celebrate that. If, heaven forbid, in the future we had another battle to fight, we'd deal with it. But on the last day of treatment, we were delighted.
Parents and survivors should anticipate that after months or years spent going through the rigors of treatment, they will have lost the feeling of a "normal" life. They may experience relapse scares, and they may need to call the doctor to describe the symptoms and be reassured.
Several months after my son ended treatment, I was driving down the street, and I started to worry that he seemed excessively tired lately. I started to feel my throat constricting, and tears sprang to my eyes. I had to pull over because I literally couldn't breathe. I had to force myself to calm down, breathe slowly, and realize that I was just having a normal attack of being petrified that he would relapse.
With diagnosis came the awareness that life can be cruel and unpredictable. Many parents and children feel safe during treatment and feel that therapy is keeping the cancer away. The end of treatment leaves families feeling exposed and vulnerable. When treatment ends, parents and children must find ways to live with uncertainty, to find a balance between hope and reasonable worry.
People forget sometimes that the toughest part of being off treatment is being off treatment! You aren't doing anything active to nail any microscopic tumor--no drugs, no zaps, no cutting, just sitting. And that can be terrifying.
I was told nothing about late effects when I was treated for Hodgkin's as a teen. The good part of that was that I had no excess anxiety. I see people come out of treatment now and they go from mentally fighting the disease to being very fearful and anxious. That's a very difficult thing. But then my ignorance caused a lot of other suffering when I tried to get good care for my late effects. Finding a balance is a very complex thing, and the way the doctor handles it from the beginning sets the tone.
Meeting with doctors and nurses
Doctors and nurses can help smooth this transition by having a meeting with the family near the end of treatment. You may have to suggest the meeting to your child's medical team, although at many centers these are routine. You may wish to make a separate appointment for this discussion so that it will not be on the actual last day of treatment. This appointment should be long enough to allow a lengthy conversation. What you should expect from this appointment are:
- A discussion about the disease, the treatment, and possible late effects.
- A sense of closure to the active phase of treatment.
- A detailed discussion of the next steps: which doctors will see your child, the appointment schedule, whom to call with questions or concerns.
- A realistic but hopeful portrayal of the future.
- Praise for your child or teen for handling a very difficult time in her life with grace (or courage, or whatever word is appropriate).
- Recognition of all of your hard work.
- A chance to give the physician and nurse feedback and thanks.
- A document (perhaps the booklet attached at the back of this book) that includes name of disease, date of diagnosis, place of treatment, total dosages of drugs, amounts of radiation, and necessary follow-up. This document will help the survivor provide all future doctors with comprehensive information on her unique medical history.
- An explanation of how to notify the treatment center of any change in address and/or how to share results of tests performed outside of the treatment center.
- An acknowledgment that you may be relieved but also fearful of the future.
- A discussion of any concerns.
- A written follow-up plan.
If any of these items are not mentioned in the last meeting, ask to have another meeting or phone call to address the rest of your questions or concerns.
Some families enjoy having ceremonies to mark the end of cancer treatment. Especially for younger children who have spent much of their lives taking pills and having procedures, ceremonies can help them grasp that the most active phase of treatment is truly over and the important transition to life as a survivor is about to begin. Following are ideas from many families on how to commemorate this important occasion.
- Take "good-bye" pictures of the hospital and staff.
- Take a picture of your child or teen taking his last pill.
- Give trophies to your child and siblings.
We had a big party during which my husband Scott stood up and called for everyone's attention. He gave a talk about how proud we were of Jeremy and handed him a big trophy. It had the victory angel on top and was engraved with "Jeremy, we are so proud of you and your victory. Love, Mom and Dad." We gave a plaque to his brother Jason for being the world's most supportive brother.
- Let your child throw away all the leftover pills or flush them down the toilet.
We waited for six months to celebrate, because we just didn't feel safe until then. But on his six-month anniversary we had a "toilet flushing party." Shawn threw every pill, and poured the liquid meds, saline, and mineral oil down the toilet, and just flushed and laughed. It was such a howl, I really wished we had videotaped it.
- Throw a big party for friends and family.
- Throw a big party at school.
When Joseph finished treatment he was in kindergarten, but the kids had gone through almost an entire year with him, and they had known all about his treatments and frequent hospitalizations and had talked as a group about it when we made a presentation to the class. It seemed appropriate to have an "all done with
treatment" celebration. We even had his two best friends who go to differe
nt schools come over to join us, and his big brother came down from his class to
share in the fun.
It was a very joyous occasion, and we made it as much like a birthday party as we could. I made cupcakes and juice, and we played games. A friend who leads the story hour at our children's bookstore came and did some songs and stories with the kids, and I even sent each classmate home with a treat bag. At the end, righ
t before time to go home, Joseph pulled out several cans of his favorite hospita
l discovery, and the kids took turns blasting a shower of silly string on everyo
ne else! We all clapped and cheered, and Joseph's wonderful teacher and I had a
chance to have a good celebratory cry while the kids put on their things to go h
ome. Clean-up wasn't too darn bad, and it meant a lot to all of us.
There's still a tiny remnant of green silly string on one of the fluorescent light fixtures, and my big second grader likes to go down and admire it when he visits his old kindergarten teacher.
- Have friends and family send cards of congratulations.
- Go on a trip or vacation to celebrate.
- If consistent with your beliefs, have a religious ceremony of thanksgiving.
The decision of what to do with remaining medical supplies can be problematic. Some families get rid of them immediately, some keep them until they feel more like celebrating, and others keep them forever.
I didn't give away or throw away the formula for Tim's nasogastric tube until it expired--almost one year after we got it. He only had that tube in for 24 hours, but I was terrified that if we got rid of the formula he'd have to have it again. I've kept all his supplies, too. Maybe I'll get rid of them when we hit the five-year mark. I know it is "magical thinking," but a relatively harmless aspect.
The parents I know have been more upset over end of treatment than they have been relieved. The "protection" of the chemo is gone. The weekly or bi-weekly visits are reduced to monthly. Also, for me, I kept my emotions in check so I could function during treatment. When treatment ended, there was enough "safe time" for it all to come out.
I couldn't get rid of those medical supplies fast enough. I boxed them up and wanted them out of the house now. I was afraid that keeping them in the house would mean that we would need them again.
I was the same way when it came to having Elizabeth's central line removed. Nurse Linda told me there had been a mix-up in the surgery schedule and they were going to have to postpone Elizabeth's surgery. My hands started shaking and I began to cry. I was afraid that if it stayed in for even one more week, Elizabeth's cancer would come back. Irrational, I know. Somehow they squeezed Elizabeth into the original surgery date.
As you will discover in this book, every child, parent, and relative reacts differently to the phases of treatment and survivorship. The differences do not matter. What is important is that you recognize that all of the above feelings are normal. You may be joyful, relieved, fearful, or terrified, but end of treatment is emotionally charged for every member of the family.
After years of treatment, families grapple with the idea of returning to normal. Unfortunately, most families don't really know what "normal" is any longer. Parents and children realize that returning to the innocent pre-cancer days is unrealistic, that life has changed. The constant interaction with medical personnel is ending, and a new phase is beginning in which routines do not revolve around being sick, taking medicines, and going to the hospital. While it is true that the blissful ignorance of the days prior to cancer are gone forever, a different life, a new, normal one--often enriched by friends and experiences from the cancer years--begins.
I try hard to believe in the "happily ever after." But I also try very hard to keep at least one foot firmly planted in reality. That way if that 2x4 ever takes another swing at me, I have a fairly good chance of being able to duck. That 2x4 packs quite a wallop!
Parents and survivors need to talk to one another, examine their emotions, decide what course they want to chart, and work together toward a healthy life after cancer, recognizing that the journey will have twists and turns and ups and down.
Many of us get pressure from family/friends/institutions to just "move on" or to "get over it." From my perspective as a cancer mom six years past my child's bone marrow transplant, I can tell you that moving on is relative.
We have definitely moved on from the day-to-day struggle of current treatment. We don't have to juggle a normal family life around treatments and treatment side effects. Our stress level is definitely less than a family on current treatment. Six years out, we also rarely worry about relapse. That day-to-day fear is gone. Of course the relapse monster raises its ugly head when there are fevers or unexplained tiredness, but these are few and far between.
We do deal with our daughter's treatment-induced learning disabilities. But even these are mundane and such a part of our lives to be considered normal (at least normal for us).
From the outside, it would seem that we should move on. However, nearly losing my child six years ago has changed me forever. This illness nearly ruined us financially, nearly ruined our marriage, had lasting effects on the psyches of our healthy children, and shook the very core of my spiritual and emotional self. I will never be the same. I will never be the innocent I was before. I now know that no matter how good, how bad, how smart, how stupid one is, your child can die. Because of that, I can't totally move on to the "normal" world. These feelings aren't with me every moment of every day, but they pop up enough to know I view life differently.
Since this experience is a journey, I will feel differently in a year and five years from now. I only know where I am right now.
I realize that, in many ways, we have been lucky regarding our battle with cancer. Tim is still here (that is the big one). And his effects have been much less than many kids I know of. Still, if we were really lucky, we would never have had to be in this battle at all. And I am all too aware that we are far from out of the woods. We keep reshaping our dream of what our child's life can be, grieving as we have to let go of the dream that was, and fearing for what reshapings may need to come.
Joseph turned 8 a month ago and as of this morning is officially a third grader! He's quite a contrast to the kid who felt lucky to be in kindergarten 50 percent of the time, bald and skinny and barely able to climb the stairs to get to his classroom. He's dealing with some residual effects of those huge vincristine doses, but his newly restarted occupational therapy is helping a
lot, and I only wish we'd done more in the past two years since he's been off treatment. The radiation to his right eye has caused a massive cataract which has left him able to use only his left eye, but we're going to schedule cataract surgery in a few months and take care of that as well.
We have moved into a version of normal that certainly isn't the same as before, but it's a lovely place to be. It's sweeter, if shakier, and has a much better perspective on what's important and what the heck isn't. We're all more accepting and more relaxed. In the new normal, if it ain't bad news, then it's just fine with us. I ditched years of work and a PhD dissertation to spend a year in the hospital with my kid and another year recovering, and I've kept expecting to feel slighted, but it just hasn't happened.
As survivors grow and mature, their understanding of what happened to them when they had cancer unfolds and expands. The past is viewed from the perspective of an older individual with a broader world view, more education, and firmer values. They ask more questions of parents and medical personnel to more fully understand the past and its implications for the future. They will struggle to cope with, or make their peace with, any late effects from treatment that arise. And they do this on top of all the usual developmental challenges of growing up.
In a perverse way, this is the goal--to get to the long-term effects. As I met more cancer families, I found that the "cure" for this beast is a series of trade-offs. All of us carry battle scars. Only a lucky few get to the promised "cure," the normal life of before.
It's so hard to tell what life experiences are related to cancer and what aren't. It's really hard to tell if a difficulty has anything to do with my cancer history or if it's something that everybody is going through. And does that distinction even matter? I'm trying to decide now whether to drift away from my many cancer-related activities. Should I stop going to the support group? Should I spend more time with my non-cancer friends? Have I gotten everything that they can give me? And have I given enough back? I've become almost like a mentor to the other survivors. I've become a big support to many of them and at times it's stressful.
Elizabeth was 3 when diagnosed. In the beginning I don't think she realized she was different. Sort of like losing a tooth: it happens to everyone eventually, but somebody has to be first. During that short period of time her innocence was intact. Then the reality hit that it wasn't going to happen to everyone, she could die. Then Chelsea did die, Sam lost her arm, Sammie died. Her innocence is now gone.
In many ways she is different from the other kids. I remember when I was young, death was this vague thing that just didn't seem real, it only happened to old folks. Elizabeth doesn't have that view. Some things in life she takes very seriously. Safety issues, smoking, eating healthy, recycling, etc., are all things that she can be quite vehement about. That is what makes her different. Her cancer experience has given her a maturity that she would not have had otherwise. And there are times when I am sad for what she has lost. But in so many more ways I'm so proud of the person she is turning into. She will be much stronger, more outspoken, more aware than I ever was.
All of that said, Elizabeth is also still very much a child. She still thinks the word "fart" is the funniest thing she has ever heard. Boys either have cooties or are her latest flame. Sleepovers are for giggling until midnight. Everything in the world should be either purple or pink. She loves to run through the woods, swing as high as the swingset will go, do flips on the monkey bars, swim until the skin threatens to peel off, and cuddle and tickle with her mom. Her world is still filled with laughter, ponytails, popsicles, and hugs. She is very much a child enjoying her childhood.
The passage from adolescence to adult life is often a stormy one. The maturing teen must gradually separate from the protection of parents and home and become self-reliant and independent. This process is difficult for many teens and occurs at various ages. For survivors of childhood cancer, this task can be complicated by uniquely strong ties forged with parents or complex family dynamics that grew out of the turmoil of cancer treatment. Parents show great variability in how they feel as their teen begins to think about leaving home.
When my daughter chose to go to undergraduate school near home, some of her friends ridiculed her because she was not going to an Ivy League school. It was supposedly uncool to not make a quick break from parents. I will always remember her asking me, "Mom, why do some of the kids think it is a terrible thing to be close to your parents? Why do they think you are less of a person because you choose what is best for you?"
My son left for college this week and I feel great. I was really worried about it before he left. But he's happy and he comes home weekends. He should be making friends, I guess. I talked about this with him--I asked point-blank: "Do you need friends?" and he said no, not really. He has acquaintances in his classes and I know he will be well-liked. But I said, "Well, they probably just party and drink all weekend," and he said, "Well, they drink and party all week!" So actually I'm relieved that he comes home.
I'm having a hard time letting go of my 18-year-old daughter. I spent so many years and so much energy keeping her alive. I was so fearful of losing her. She's a miracle. But now she needs her own life and can't continue to be tied to cancer. She wants to leave it behind and she needs to move on. Part of me also wants that for her, while another part is screaming, "I can't lose you." Thinking of her leaving is the only thing that makes me sob, and I'm always surprised at how long the sobbing lasts.
Teens and young adults also show a mixed response to leaving the security of home for the first time.
In some ways, I was so mature so fast, and in other ways I was too dependent. For instance, I didn't even have my driver's license until I was 20. I really didn't drive much until I was 25. I know the social workers thought everything went seamlessly and, on the outer surface, that was so. There were many hesitancies. I stayed close to home for college. I didn't want to leave the clinic or my parents. In some ways, I feel like I'm still making the transition to adulthood, even though I'm 25 and married. I work with a lot of people around my age, and I'm envious. They don't have to worry about insurance or late effects from cancer, or friends who die. So in some ways I feel like I have a normal life, and in other ways I feel quite different.
I had leukemia 30 years ago when I was in high school. My mother was a rock. She said, "We are going to attack this and you are going to live. Where there's a will, there's a way." My grandmother was very positive too. They pounded that into me. And I'm still here. My mother was way cool about independence. She had remarkable foresight. Here I was, a teenager, sick and dependent. She taught me to drive and let me drive to doctor appointments by myself. She gradually let me go so by the time I was leaving for college, she was treating me like an adult. And I felt ready to go and mature beyond my years.
My transition was normal because I went away to college--four hours from home. I don't think that my folks thought I would leave. I didn't show a lot of academic ambition, so it surprised them. But one day, I just decided I wanted to go and I applied to five schools. I did end up at the same college as my brother, and we even lived in the same dorm one year. In college, I made a big, fresh, new start. College was a wonderful experience for me. I had been socially awkward in grade school and high school, but in college, I made lots of friends and tried many new things. I was on cloud nine.
One aspect of transitioning to adult life is assuming control of medical decision-making. Teens change from pediatric to adult healthcare when they leave home to enter college or take a job. Many young adults do not seek out comprehensive healthcare, and for healthy individuals, this is often not a problem. But for survivors of childhood cancer who are at risk for possible late effects, a gap in healthcare services can be serious.
I've always been very conscientious about my follow-up care. When I took a job far from home after college, I wanted to find a specialist to provide skilled follow-up care. I heard about a doctor from my hematologist and some friends who have had good experiences with him. I wrote a letter explaining my Hodgkin's history and saying that if he was accepting new patients, I'd like to set up an appointment.
Well, at my first appointment, I was delighted. He knocked, instead of walking right in, introduced himself (without the Dr. in front of his name), and sat down to take the history while I was still in my regular clothes. We went over exactly what things we needed to be concerned about at this point and what I needed to do in terms of screening, infection prevention, etc., in a very reassuring, non-scary way. The way he individualized everything just felt so comforting.
I'm not on my parent's insurance anymore since I'm out of college. So I don't go to the clinic. I don't even have a regular doctor. I'm supposed to get tests like an echo every year, but I just don't. I guess if I get sick, I'll find a doctor.
By taking responsibility for your adult life, you can integrate the physical, emotional, intellectual, spiritual, and social parts of your life. In decades past, you might have been referred to as a "cancer victim." Now you can view yourself as someone who was victorious over cancer.
I'm an adult survivor of childhood cancer. I think you reach a point in your life where you need to integrate the experience so you are not just a cancer survivor, but a person who had cancer and learned something from it. I know people who still harbor a lot of anger or use the cancer history as a crutch. I still feel some pain for the part of my childhood that I lost, but I try not to let it get out of hand. I've realized that all humans face different crises and struggles in their lives, so my cancer experience doesn't make me special. It should help make us more understanding of other people's struggles. I'm old enough to realize that it wasn't just about me. Everyone in my family was in the experience and changed by it. I like to turn it around in my mind and view it as something that gave me strength.