Adult Survivor of Childhood Cancer sound off. Just think!!!

longtermsurvivo

Don't you wonder why know one help long term survivor. Why the medical community will not help. O' Let me guess they don't read The Cancer Survivor Network Message Broad. I know big talk if you are a survivor well I not, I have a deep believe in God and I'm a guinea pig, no longer a human and I have try to start a childhood survivor group. Boy! the touble you can get into is crazy. You hear at the survivor of childhood cancer don't need help. It's like an out of body or out right experience , and you're not in control. I love to talk to parent of cancer patient you don't know what it like! That right I have a believe in God. O'No now I go to get it now. Will there right I not a parent at the time. I was a 3yr old boy aka guinea pig#003 with a i.v. in 1964 with wilm's tumor. It's amazing after 39yr of survivorship how hard it is to find help, insurance and a doctor who will to listen to survivor's, people who gave up there childhood and who gave there tears, blood, body parts and so there life.To help save them self and so other could live. I think I know what veterans and older people feel like forget and undersired fight for medical right to live and know what life is about. It's about help other make it in the world. Just remember life is a gift from God. so see the author of life and dead. One last thing please don't tell me about sum b.s. web site and book. This is my opponent. Sorry for the mispell. Thank you for your time.

This is for my hero a great dad ans a hell of a father and a great grandpa to my son. RIP

lindazame

Hi Joe,

I see you are still posting some of the same concerns and worries that you shared several years ago with me. I understand that you feel there is no one out there who is interested in helping survivors. You say you don't want to hear about Nancy Keene's book, Childhood Cancer Survivors, but have you read it? You say there are no medical people out there who are interested in helping adult survivors of childhood cancer. But that too is untrue and in the last five years more amd more people are making large efforts to help survivors. In your home state of Texas one of the best late effects clinics is located, with Dr. Oeffinger offering wise, smart and compassionate care to survivors. If you want good care it is worth the time and effort to travel to Dallas to be seen by Dr. Oeffinger.

I hope you are able to find the care you want and need
Linda

longtermsurvivo

This is a place of opponent & discussion not a police state of speech place. This is my opponent. Why have a message board like this if your are right?

lindazame

longtermsurvivo said:

This is a place of opponent & discussion not a police state of speech place. This is my opponent. Why have a message board like this if your are right?

Hi Joe,

Isn't the intent of this message board to provide good information so long term survivors can get the help they need? And when there are helpful resources out there shouldn't we make sure survivors know about them? I think the book Childhood Cancer Survivors by Nancy Keene is an excellent resource for survivors. I have read and given copies to other survivors I know. I wonder what you find so objectionable about this recommendation?
And increasingly there are more and more doctors and clinics that see only survivors of childhood/adolescent cancer. As I said earlier one of the best in the country is in Dallas, Texas.
Have you been seen in one of these clinics or seen by a physician that specializes in late effects? Until you have, you may talk about a medical system that ignores surviors but that is not the entire truth. Since this is the firsst place that surivors look for help or answers it is important to make sure that they have access to accurate information. I don't see us as opponents but individuals who are looking for good care and understanding.