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It can take a little time or become a focal point of your life.


Part of advocating for yourself is knowing what illness and treatment you had.


It's okay to be tired of being the "good cancer patient" and tired of hearing people say you should be grateful to be alive.


Challenge rules that restrict the options of survivors.


Tell your friends and family your feelings about your cancer journey.


In telling my story to others, I educate my corner of the world about what it feels like to have cancer and still be alive 22 years later and still dealing with the aftermath.


Advocacy is not for everyone.


I've grown into a person for whom cancer was a part of my life, not the whole of it.


The flip side of the great cure rates is that a lot of survivors are struggling with late effects....


It is our collective intelligence that will push the snail a little faster.

Advocacy


The following excerpt is taken from Chapter 4 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.

Cancer is a life-transforming experience. No matter what your education, experience, or time restrictions, there is much that can be done for others if you choose to advocate.

Survivors and their families have the potential to effect individual, institutional, or social change. Advocacy means using this power so that you or other survivors get what you need to live the healthiest life possible. Sometimes this consists of educating health professionals, politicians, or society at large. It can mean setting up a peer support network--from two survivors who meet for coffee once a week to an organization with thousands of members. It can take a little time or become a focal point of your life.

I'd like survivor issues to get on a burner closer to the front of the stove. We have large numbers now, and we are going to drive the process or it's not going to happen. We need to get the same kind of energy and enthusiasm that the breast cancer survivors have. They are amazing. They have so many corporate sponsorships and celebrity spokeswomen. They have made it a big issue and raised lots of money.

But I think many childhood cancer survivors just want to be done with it. A lot of them consider it to be a bad time in their lives and they want to leave it behind. If someone organized this group--which is becoming larger and larger--it could really have an impact.

Individual advocacy

Individual advocacy means being able to stick up for yourself in order to get what you need for the rest of your life. You need to learn how to work the system to get the best healthcare, an appropriate education, and a job that will not discriminate based on your cancer history.

To be your own or your child's best advocate, you need to know everything you can about what the treatment was, what the risks are, what monitoring is necessary, and where the resources are. And then you need to go get them. Because knowledge is growing daily, you need to be seen by a doctor who keeps up with the literature so you will get the most up-to-date follow-up care available.

Part of advocating for yourself is knowing what illness and treatment you had. I was diagnosed when I was 8. I found when I went back as an adult that things I'd always assumed were true were not. It had really blurred over the years. When I finally got my records, I was surprised at what I read. I was also kind of sad that I had worried for years about late effects (especially a second tumor) that I was not at risk for. It was really important to get the facts to find out what I was at risk for and what I wasn't (almost everything!). I asked the doctors who treated me for my records, I read them, and then they wrote me a summary for my personal records.

•  •  •   •  •  

Getting follow-up is not that easy. Most of us finish treatment and are followed in the pediatric clinic by whoever treated us. Part of advocating for yourself is knowing what illness and treatment you had. I didn't want to see or hear about cancer. Years later, I went back to get follow-up. Some of us do, and some of us don't. Some who try to go back can't find a place to go that knows anything about late effects.

Getting good follow-up is frustrating. I was treated at the National Institutes of Health, and I went to their follow-up program until it was closed due to lack of funds. Then I started going to an internist, and I basically tell him what I need and he authorizes it. To find out what I needed, I talked to my treating doctors, took notes of what they said, and got copies of technical articles. I'm an adult so I could talk to them on a more equal basis, which helps. I'm at risk for heart damage so I go for a checkup every year.

In order to advocate for yourself, you may have to overcome some cultural stigmas. You have to recognize that you will probably have many complicated feelings about your cancer and late effects. But our society often expects survivors to feel only relief and happiness. It's okay to be tired of being the "good cancer patient" and tired of hearing people say you should be grateful to be alive. There are a lot of cultural barriers to breach before it will be understood and accepted that cancer treatment can create a number of complicated and ever-changing emotions that reverberate through the years of survivorship.

I hope that what was learned from me will make things better for other kids with cancer. I just want there to be some benefit from it. I hope that getting people to talk about all of their feelings will help them integrate the experience as a whole, not just a slice that includes being happy to be alive. Many survivors don't want to bitch and say how they really feel because of the pressure to "get over it" and move on.

It can be a big load to be an advocate in the healthcare system, school, and community. However, much satisfaction can result. The following list contains things you can do as an individual or a family to advocate for improvements.

  • Get copies of your records to enable you to advocate for your future healthcare.
  • Get those records now, including x-rays and other such studies. I need my radiation records from 1972, but they don't exist anymore. I need some earlier chest films, but they have been sold for the silver contained in them. I am out of luck. Collect those records and studies now as you go along. You will care for them far better than the health system.

  • Work with the school to get your child an IEP or 504 plan to get the best possible education.
  • Challenge rules that restrict the options of survivors.
  • Paige had both eyes removed to treat her bilateral retinoblastoma. I enrolled her in gymnastics and they said she couldn't participate because she was "developmentally handicapped." I disputed that statement and they retracted it, saying instead that there were "safety issues." We had to force the issue through the Human Rights Commission (Canadian), and it took three years of fighting to get her reinstated. It's really helped her spatial awareness to walk on the balance beam, jump on the trampoline, and swing from the bars. It's given her a sense of freedom that she wouldn't otherwise have.

  • Lobby your hospital to change policies.
  • Volunteer to staff a local organization's cancer information line.
  • Start a support group in your community or hospital.
  • Talk about your experience to local civic groups.
  • Write letters to newspapers, magazines, or politicians about survivorship issues.
  • Share your experience with the media or legislatures to help shape public opinion or policies about cancer.
  • Bring in technical articles to educate your healthcare provider about late effects of treatment.
  • When I asked the doctor who treated my daughter for leukemia when we should come back for her first follow-up echocardiogram, I was told not to come unless she had symptoms. I asked the director of the clinic the same question and got the same answer. I then said, "She was treated on a CCG protocol. The CCG cardiology committee published recommendations for cardiac follow-up that you aren't following. Can I send you the article so we can discuss it?" She said yes. She called and told me that she was embarrassed not to know the recommendations, but thought they should be written into the protocols. So now my daughter gets her echocardiograms every two years.

  • Become a counselor at a camp for children with cancer.
  • Ever since I've had cancer, I've felt that I need to make the most of my life, be happy, do things that have meaning for me, and help others who are battling cancer. I do meditation prayers that make me feel hopeful and give me a sense of peace. I wish for a glorious future. I really feel there was a purpose to having cancer. I feel a need to serve. I've been a camp counselor for the past fifteen years at the camp for kids with cancer and their siblings. I enjoy the camp so much I wish I could work there year round. It's so fulfilling. Sometime in the future, I'd like to start a non-profit organization just for children affected by cancer (those who've had it, had parents who had it, or siblings who had it).

  • Offer to be a support person for newly diagnosed families.
  • Join committees to effect changes at your hospital.
  • I think our follow-up system is inadequate, so I've been appointed to several committees to try to improve services. I sit on one very powerful committee, which dictates protocols for pediatric oncology for our province. We are trying to establish new clinics which will address not only medical but psychosocial needs of survivors. I want to make sure that survivors have information available about their health so that they are not left out in the dark. When I went through the system, there was no such thing.

  • Donate to groups that lobby for survivors, such as the National Coalition for Cancer Survivorship.
  • Help fundraise to start or sustain a comprehensive follow-up clinic.
  • Encourage changes in medical groups to benefit survivors.
  • Late effects are a moving target. Protocols change, survivors age, new drugs are used. I'd like to see the new clinical trials group (Children's Oncology Group) develop and maintain a national database of late effects of childhood cancer survivors so that the effect of treatments can be used to make future trials safer.

    I'd also like them to create a new position--a telephone line, answered by a human being--that would dispense updated information to survivors and their physicians. This would be great for primary care physicians who are not experts in late effects, but who want to get the most current information in order to give their patients the best possible care. They could talk to someone at COG to get educated, up-to-date, accurate information.

    This could be a way for COG to say thank you to all the survivors and their families whose participation in clinical trials enabled doctors and researchers to develop treatments which resulted in such spectacular cure rates. It would show that they not only care about cure rates, but in giving survivors their best shot at long and healthy lives.

  • Tell your friends and family your feelings about your cancer journey.
  • I've never held back information about my illness. I don't look for sympathy in talking about it because I don't need that. I talk about Hodgkin's so that I educate my circle of friends, family, and neighbors. Talking about my cancer and the restrictions it has put on my life is my way to help them learn that "It's not over when it's over." Each person may leave me and share my story with others, and the circle expands to educate those who are not aware of long-term cancer side effects.

    I think this is part of the shield that each person has to learn to let go of in order to inform their corner of the world that long-term side effects do exist. If we can't educate the people we know, love, and deal with on a daily basis, how do we expect to educate the medical profession and strangers who may be able to help the cause? We have to be heard, so we have to start with our family, friends, and neighbors.

    In telling my story to others, I educate my corner of the world about what it feels like to have cancer and still be alive 22 years later and still dealing with the aftermath. It gives those people who care about me the opportunity to learn compassion for me and others like me.

Advocacy is not for everyone. Sometimes survivors just want to carry on with their lives. Over time, you may have greater or lesser interest in your cancer history.

I've been a survivor of osteosarcoma for a long time and am still quite involved with the cancer world. I am a camp counselor, go to numerous conferences, and have many survivor friends. We have a sense of community and many of us want to give back. In one sense, I want to be an advocate who is proud of who I am and what I went through. But on the other hand, I don't want to get so caught up that I am only identified with cancer. I used to define myself completely by my cancer experience. But I came to realize I shouldn't define my whole life by that. I've grown into a person for whom cancer was a part of my life, not the whole of it.

Group advocacy

Group advocacy can be very effective in encouraging and creating change at the community, state, or national levels. Issues that can be addressed are national funding (increased monies needed for late effects research), institutional funding (start and support comprehensive follow-up clinics), political changes (improve anti-discrimination laws), state programs (improve insurance options for survivors), and hundreds of others. There are innumerable ways for groups to effect changes.

  • Start an online support group.
  • I started an Internet support group for long-term survivors of cancer. Long-term survivors of cancer face unique problems. Most will face social challenges (insurance and employment), some will have emotional challenges, and some will have ongoing health problems related to treatment. This discussion group addresses the unique needs of this group.

  • Organize a conference at a treating facility to educate caregivers on survivorship issues.
  • Lobby an institution to provide comprehensive services for survivors.
  • I fly my daughter 1,000 miles to a follow-up clinic because our treating institution doesn't provide comprehensive follow-up care. It really bothered me thinking of the thousands of survivors in our region who didn't know what they were at risk for or had no one to talk to about their medical past. So I wrote a letter to the CEO of the hospital asking that a late effects program be put at the top of the priority list. I asked others in support groups to do the same. I don't know how much impact it had, but the hospital has recently hired a doctor with expertise in late effects to create a follow-up program.

  • Attend local, state, or national gatherings of survivors.
  • Encourage family and friends to create or join committees that work for survivor issues.
  • We need to pressure institutions to reallocate funds and start long-term survivor programs, transitional programs, and adult survivors of childhood cancer programs. There are thousands of survivors out there who have no jobs or are in dead-end jobs who really need help with vocational rehabilitation. Teens with disabilities need help preparing for college. There just doesn't seem any corporate interest in funding these programs. I don't think helping survivors is controversial, maybe it just makes people uncomfortable. The flip side of the great cure rates is that a lot of survivors are struggling with late effects, and I think we all need to work to help them out.

  • Establish committees that lobby for political changes at the local, state, or federal level. Grace Monaco, JD, wrote:
  • Pediatric cancer patients are an underclass; too few cases are diagnosed yearly to provide the numbers of constituent voices that make legislators take notice. If these voices are augmented by those of adult survivors of childhood cancer, friends and relatives, and the medical and community caregivers who have provided services and assistance to them, we begin to approach the numbers that make for effective numerical advocacy. If all these people join coalitions addressing childhood disease and changes in social policy and responsible funding for research and clinical care, we increase our opportunities to make an impact....We need a collaboratively developed agenda for the medical, social, and political changes that will improve access to care, control of disease, cure of disease, and enhancement of the expectations for our survivors.

Networking with other survivors and advocating for change will help survivors following in your footsteps. A long-term survivor summed it up beautifully:

I guess it comes down to this: we're all in this together. We're all breaking new ground. We're all facing things medical science doesn't yet understand. If we don't talk to each other, who will we talk to? Medical science will continue to move at a snail's pace on long-term survivor issues if we don't speak up. And we can't speak up if we're in a vacuum. It is our collective intelligence that will push the snail a little faster.

I think we have an obligation to go forward, to be as candid as we can be, to protect ourselves, to lessen each other's burdens, to share knowledge and move the cause of long-term survivorship forward. And there's a legion of new survivors behind us, people with cancer living longer lives, who will need the information we are now pioneering.


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