My name is Amanda. When I was ten I had a brain tumor that changed my whole life. Now in my late 20s I hope to reach out to others to help them cope.
Due to my direct experience with Cancer we can share experiences and I can provide more accurate reflection because I know what it feels like. Over time, this kind of deep sharing could result in true friendship that supports your healing. I am also committed to sharing resources I know about and helping you find the right fit to support your needs.
Cancer isn’t over when you leave the hospital, or when the doctors finally tell you it’s gone. Having childhood cancer changed my life in many ways:
Hair loss - Like many girls, my hair was really important to me when I was younger. Due to the mixture of radiation and chemotherapy that I got, my hair grows back very slowly and very thin.
Weight loss - After surgery I temporarily lost the ability to feed myself and had to be fed almost entirely through a feeding tube. By the end of my treatment I had lost a lot of weight, and because of my shrunken stomach and highly sensitive gag reflex, I still only maintain a minimum weight for my size and age.
Memory loss - I know everyone loses some of their childhood memories as they grow older, but I definitely suffer from memory loss. I have had to re-remember and relearn many things I used to be certain about. As I said before, I had to re-remember how to feed myself, I also had to re-remember how to walk and talk and live a life where I didn’t need to depend 100% on someone else to do, or help me do, everything. There were also many academic things that I had to re-remember. I say re-remember because for most things, both physical and mental, the knowledge and muscle memory were there, I just had to find and access them.
Lost Skills - Starting at age 5 I danced ballet. I didn’t have a dream of becoming a famous ballerina, but it was something that I loved. A lot of the steps, jumps and positions I can still physically do, but because of balance problems and nystagmus (uncontrollable jumpy eye movements) I can’t spin. There are other things I’m just not willing to put the time and effort into trying to do, because I expect to find out that I can't.
Friends - In elementary school I had a wide variety of peers and casual friends. But my really close friends, the ones that I invited to play-dates, sleepovers and birthday parties, all had houses with birth mothers and fathers - lives similar to my own, growing up with the same moral values as I did. Now my friends come from all kinds of lives and don’t necessarily have those same values. I find that I often need to be the sensible and responsible person in the lives of my friends, when I’m still learning to be sensible and responsible with my own life.
Abandonment - Most of my friends from elementary school and my other activities stopped coming around, even the ones I went to Middle School with and saw every day. I had to make an entirely new group of friends at a new school, with a slightly different schedule than everyone else, a slow body and a slow brain. I understand that its normal for some friends to come and go throughout your life, but to have nearly all of them leave me at a time when I needed my peer support group the most, was devastating.
Sympathy - At times I’ve felt that people who don’t see me frequently (or who love me a bit too much) offer me more sympathy than necessary, and treat me like I’m a small fragile child. Other times I’ve felt like I wasn’t receiving enough sympathy, and wanted to scream, “I’m only a small fragile child!”
Ruby slippers remind me of the short part of my life when things were simple and not horrible. Most of my childhood memories left with cancer. I don’t actually remember having or wearing ruby slippers as a little girl, but they still have a strong presence in my life. I have adult size ruby slippers, ruby slipper socks, and a ruby slipper Christmas tree ornament. I have a Wizard of Oz Pez set, a musical yellow brick road glitter globe, and a Wizard of Oz theme Monopoly game.
One theme of the Wizard of Oz is that the power is inside you. That’s a really strong message, particularly when dealing with cancer.
Cancer changes your life so much that there truly isn’t a happy ending, but we can try to make a happier one.
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