i don't know anymore

callie_marie Member Posts: 1 Member

I've been cancer free for over ten years now (I'm seventeen). My specific illness (Langerhan's Cell Histiocytosis) was only recently classified as a cancer and I feel like my entire world has changed. I don't know what I'm feeling or how to express it. I can't remember most of my childhood due to trauma (eighteen surgeries before my eleventh birthday, chemotherapy for eleven months, bilateral hearing loss, etc.). I've never felt like a survivor, but I also know that I've never been "healthy" (in terms of not having cancer, that is). But now I am, technically, a survivor but I don't feel like it. I don't belong anywhere. Plus, Histiocytosis is so rare that I feel like I'm all alone. None of my friends understand, and I feel like I can't talk to my parents because it makes them sad. Has anyone else had a similar experience?


  • AhleecFightsSRCC
    AhleecFightsSRCC Member Posts: 7
    Callie- I've not had your

    Callie- I've not had your experience, but I know the feeling of a rare cancerous disease and scrambling to find others.  There is much to come to terms with.  You do not have to do it all at once.  You are not alone.  Please find and read Kris Carrs, Crazy Sexy Cancer books.  You will be inspired.  An opening quote:  "A survivor is some one who lives with, after or in spite of a a diagnosis or traumatic event. Survivors refuse to assume the identity if their adversity. They are not imprisoned by the constructs of a label. Instead, survivors use their brush with mortality as a catalyst for creating a better self. We transfirm ourselves in order to evolve spiritually, emotionally, physically and mentally. Our reality challenges us to go deeper. Survivors cultivate an essence that will never be victim to a ward." 

    I have a daughter who finds it hard to talk to me because of this. We went to a local cancer support group so she can talk to others.  It's understandable to feel like you can't talk to them, but do try.  They will hear you. -Alicia

  • agitated_persimmon79
    agitated_persimmon79 Member Posts: 1 Member

    I know this post is from 5 years ago, so it feels a little like shouting into the void. But @callie_marie , I was recently diagnosed with LCH and would appreciate hearing about your experiences. I expect it might be a little different (because I was diagnosed as an adult), but all info helps! Have you had any reoccurrences since you posted this?