Non-Hodgkin's Burkitt's Lymphoma Survivors?

NHBurkitts1516
NHBurkitts1516 Member Posts: 9
in Childhood Cancers #1
Hello,

I was diagnosed when I was 15, and relapsed when I was 16. I'm now attending college and I find that I'm still dealing with some delayed responses and I have a lot of trouble focusing and remembering things. I was wondering if there was anyone else out there who can relate. :) I've been in remission nearly five years, and I've never spoken to another survivor about my experiences. I've never spoken to anyone about my experiences. I've always been reluctant to actually join a support group,(when people start crying, it makes me uncomfortable and I really don't enjoy telling my secrets to strangers who happen to know my face)but this site is much more up my alley. I can talk with people about their experiences. I suppose I'm looking for some friends who know what it was like for me when I was younger, and maybe even to help some of the younger kids nowadays that are going through what I've already been through. I'm looking to talk about life and what it was like then, and what it's like now. Please feel free to send me a message on this site, I'd love to talk to anyone about it, or help anyone through it in any way possible.

Thanks all for your interest!

Comments

  • schoie01
    schoie01 Member Posts: 1
    #2
    Hello
    Hello i am 19 years old i live in australia and i was diagnosed with the exact same thing, i presented with a bowel intersusception in early feb of this year had an operation and thats when they found the tumour inside my bowel i was lucky to get it in that spot because it caused the bowel intersusception and i got it early, i went through 3 rounds of high dose methotrexate based therapy which ended in late may or early june i have been in remission ever since i am so happy that i have found someone who has gone through the same thing cause it is such a rare cancer please respond cause i thought id never get a chance to speak to someone about it, by the way my names Rhys :)
  • NHBurkitts1516
    NHBurkitts1516 Member Posts: 9
    #3
    schoie01 said:

    Hello
    Hello i am 19 years old i live in australia and i was diagnosed with the exact same thing, i presented with a bowel intersusception in early feb of this year had an operation and thats when they found the tumour inside my bowel i was lucky to get it in that spot because it caused the bowel intersusception and i got it early, i went through 3 rounds of high dose methotrexate based therapy which ended in late may or early june i have been in remission ever since i am so happy that i have found someone who has gone through the same thing cause it is such a rare cancer please respond cause i thought id never get a chance to speak to someone about it, by the way my names Rhys :)

    Hi!
    Hey there, I'm sorry it took me so long to respond. Life gets busy you know? I hadn't had a response so I guess I just stopped looking.

    I'm glad to hear that everything was caught so early! Methotrexate is fun when you're eating it for breakfast. ~_~ I think I had the least illness caused by that one though. I'm so glad to hear that you're in remission! You know what they say right? After you make it through the first year, you need to be cautious, but not worried. NHBL is so aggressive, but then again I'm sure that you know that. Actually my five years/"cure" was 11-11-11!!! It goes faster than you know!

    If you want to exchange email addresses or instant messenger names let me know, and we can chat more about it!

    I'm Heather! Pleased to cyber "meet" you. :)
  • BurkittsSurvivor79
    BurkittsSurvivor79 Member Posts: 5
    edited March 2018 #4
    NHBurkitts1516 said:

    Hi!
    Hey there, I'm sorry it took me so long to respond. Life gets busy you know? I hadn't had a response so I guess I just stopped looking.

    I'm glad to hear that everything was caught so early! Methotrexate is fun when you're eating it for breakfast. ~_~ I think I had the least illness caused by that one though. I'm so glad to hear that you're in remission! You know what they say right? After you make it through the first year, you need to be cautious, but not worried. NHBL is so aggressive, but then again I'm sure that you know that. Actually my five years/"cure" was 11-11-11!!! It goes faster than you know!

    If you want to exchange email addresses or instant messenger names let me know, and we can chat more about it!

    I'm Heather! Pleased to cyber "meet" you. :)

    Burkitt's Survivor from 1983

    Hello,

    I'm also a Burkitt's Survivor from 1983. I'm a 38 year old female, not doing so hot these days.  Let me know how are doing. Would love to talk. I had difficulties focusing on school too, tests were very hard for me. How are you doing physically these days?

     

    Alexandra

  • SBDeSelle
    SBDeSelle Member Posts: 2 Member
    #5

    Hello everyone. I’m a Burkitt’s survivor since 2002. Like many of you, I’ve struggled with being able to focus - often on work but even trying to enjoy hobbies. I was 34 when I was diagnosed, so I’ve always questioned whether my lack of vigor (or passion, or interest, or whatever you want to call it) is from my cancer (and treatment) or just because I was getting older. I’m in full remission, and there are many things I want to do, but I have little motivation. For years I kept a photo of myself in the hospital, and told myself “remember, today isn’t a bad day”. It helps, but deep down I still struggle.

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