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Ilamolana
Posts: 1
Joined: Aug 2004

HI, I am new to this discussion board,and I had some thoughts maybe some of you could identify with, cause if anybody could it is the people on this page. Just for your info this might end up being a long message, see I got on the comp to work on a speech piece, but got sidetracked. Anyways, I was diagnosed with ALL in 1989, I was 2. Anyway, my 17th birthday is tommorow and it is one of the two days a year that I tend to look at my life in a different way. The other day is the day I get my blood checked. Sorry, it is taking me a while to get to the point, I tend to be a rather long winded person. See, In some ways I don't think I fit in with people a lot, I mean socially I do, but I don't know anyone who really understands what I think about things. In some ways I don't even fit in here. That was confusing, let me clarify. I was 2 when I went through chemo. Does anyone know at what age a child is supposed to be able to form coherent memories? I really would like to know the answer to this if anyone knows. My earliest memories are of the hospital, things like being hooked to IV's or having a catheter, and then later of having my mother clean my catheter or give me my medications. I never really understood any of it. I don't remember precisely when my mom explained to me why I had to get the blood tests, but even then I still didn't understand. Once again sorry this is so long. Being too young when it happened, I guess no one ever thought they needed to take the time to explain things to me, cause I was there. However, I did need a lot of explaining, I still need some. Anyway, last year at the end of my Junior year of high school we were doing a project for my AP History class, and we all drew a year from a cup. I got 1989. After that somehow I got the courage to actually ask questions, the night before I was going to get my blood checked, I told her something she never really knew, and that was that I am always scared it will come back, and I feel, and this may sound strange, but I feel in a way like I have amnesia or alzheimer's or something, because I don't know anything about something that was so important that happened to me. I guess my point is that reading you people's stories and conversations makes me feel connected to a part of my life that was important, but that I don't really remember. I know you must be thinking I got off easy, because I don't remember the pain I went through during treatments, but in some ways I think the remnants of memories I have are just as bad. I hate needles, and ever time I get blood drawn or even have my finger pricked I get so freaked out, and my mother always says, " but you've been through so much worse than this" I always say, "yeah, but I don't remember it". I guess my purpose in writing this is to try and find someone who understands, or even someone who just wants to talk. I really wish I knew more, but I will close with one last thought, if someone asked you something like what treatments did you go through or some other detail, could you answer them? I can't, and I'm too afraid to ask questions, for fear I will upset someone. Sorry agian that this was so long.

-Annie

erica10
Posts: 30
Joined: Jul 2003

Hi~
I'm erica10 on this site, i was diagnosed with ALL when i was 9. I can't relate to not remembering parts of the past, but i can relate to not understanding what's going on. It was hard at age nine to get what they were doing to me, but they tried to help me. If you want to send an email to my webpage i will reply back to it. So don't hesitate. Oh yeah i guess my age and status might help huh.hahaha. I'm 18 years old, currently attending community collge, and i have a wonderful boyfriend that i adore (he also has cancer or had anyway). He goes on this site sometimes to update his stuff. So anyway that's about it. That and i've been in remission for 7 years now. So yeah. Ok well i better go.

Talk to you later,

Erica

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SwingBridgeTSI
Posts: 78
Joined: Oct 2003

The best thing for u to do is sit down with your parents and ask questions and have them tell you everything you went through u may end up rembering things. Its actually known that your mind can block out the horrible parts in your life like how u do not remember things. By having family tell you what went on and what u went through it may help you get over it. My doctor told me before I went into surgery well a week before that I may not remember anything from entering the hospital up to and after the surgery because your mind can tend to block it out. He was right I remembered entering the hospital that was it. I did not remember regestering, walking clear cross the hospital or anything of that day till I had people tell me and remind me what certian people looked like now its kinda just bits and pieces that I can plave together. I wasnt 2 or 9 like erica but I have been told that the younger you are the more u block out. I would say sit down with your family and talk about it. It may be hard for them to tell you and hard for u to hear but in the end it can help you know what your life has been like. I am 23 and was dx'ed at 21 and I know its completly different then what u have been through. I am a lung cancer survivor. and I know that 17 can be confusing. I hope that this will help you and if u ever want to talk feel free to e-mail me on here.

Kristin

elraub
Posts: 3
Joined: Apr 2003

What you're feeling is probably as old as the first case of childhood cancer itself. I was diagnosed at about 6 in 1986 with an intramedullary spinal cord astrocytoma. My treatment was strictly radiation, and lots of it. The consequences of all of the events that happened in a span of about 2-3 years still effect my life to this day, at 24 and well beyond the treatment days. I have trouble sleeping, my spine is a well-fused mess, and I honestly don't quite know what to expect as far as my quality of life in my later years. One of the worst things about it is that I hardly remember a thing. I spent every childhood year after treatment trying to put the past behind me. For probably 10 long years I struggled to get somewhere where the past didn't matter, where people stopped asking questions and staring. I was very successful at this, to the point where almost no one knows and certainly no one cares what even happened to me. As long as I'm getting my projects done, or I went to the grocery store, or I'm going out to dinner Friday night, or any number of mundane things that I never got to do or were torturous to do, nobody asks questions, or stares, or whispers anymore. Well, except the wee ones, but every day is another step towards making my peace with them. The point is it doesn't matter, and that realization was confusing and a little disconcerting. Now, I have a beautiful wife, a nice job, some great college memories, everything I thought I'd never have (or would never get fast enough), and I can barely remember a thing about the most important events of my life. I spent a decade not looking at my back because I was ashamed and angry about what was back there, and what they had done. Now that I'll actually spend a moment of my life sitting around with my shirt off, I'm curious about what I've been hiding from myself as well as everyone else all these years. I look in the mirror at the faded scars and feel like I've managed to lose my identity by forgetting everything about what shaped it. I've so successfully put everything behind me that what I should be able to remember- I can't. What I do remember comes in spurts or flashes, mostly of my most intense or painful moments. Usually I don't remember me, but some kind of terrible image cobbled together from vague recollections and horror movies. I do remember that my life wasn't that terrible, once the moment passes, and so I'm trying to tear my way backwards into my own mind to come to grips with who I am and who I've become- again.

I would certainly encourage you to not lose contact with your memories. It sounds like you remember a lot, and you'd be surprised how much you can force yourself, and others, to forget through your own silence and refusal to talk about or face what happened. Your parents probably sacrificed a lot for you, and now seeing the wonderful person that you are and at a good distance from their own trauma, they are probably your best source of information. I'd stress that you spend a lot of time introspectively examining things first. Someone else's memories can all too easily become your own. Try as hard as you can to remember everything looking out from your own head. Obviously you can't remember what you must have looked like hooked up to all of that nonsense, yet that's what I always try- and fail- to imagine. Get as good an idea of how things went as you can, then ask your parents to help you fill in objective things that might help. Dates, places, doctor's names, maybe some pictures of the hospital or the room itself, gradually working toward you. If you can set the stage for everything, you might find it easier to place yourself in it than if you attempt to go the other way around. I'd stress that your WRITE EVERYTHING DOWN as you think. Some things may be wrong, or conflicting, but you can work on that once you've emptied your head. I can't remember much about my old child psychology class in college, but from what I do remember you should have been perfectly able to record stimulatory memories, but you would have had a very difficult time with a sense of self. You can remember what something looked like, or how it smelled, but you might not have the memories of something happening "to you". I was old enough for most of the higher functions to have developed in the later procedures, so I can remember how "I" felt when certain things happened. That probably had a good deal to do with my blocking things out. Good luck, and don't be afraid to upset anyone. You have the right to know as much as you can find out about who you are, and just because a life-defining moment happened when you were very young doesn't make it any less defining or important to remember and understand.

As you can tell I'm comfortably long-winded myself, so feel free to contact me if there's ever anything you'd like to talk about. I also know of a few decent reads on memoir, memory, etc. For what it's worth, I don't think you got off easily. I don't think I could handle what I went through now. The pain, the uncertainty, the disruption of my life, but that doesn't mean I'm not still suffering because of the fact that it all happened at such a young age.

Daysee18
Posts: 7
Joined: Apr 2004

hi, i'm 17 also and i was diagnosed w/all when i was 11. i feel exactly the same you do when it comes to feeling different even tho i am very social, my friends still don't understand..i really wanna talk to you some time!! <3 elana

ajsturmfels
Posts: 3
Joined: Jul 2004

I was diagnosed with ALL at 4, and I know exactly what you mean. I don't know everything about my treatments or what I was on. But we're still survivors, and we still have a story to give. I agree with what everyone else had said. Learn what you can, but focus on the point of surviving and not on how or why you did. I wish you the best!
Andrew

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