Following long term survivors - why don't they?

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  • patty7
    patty7 Member Posts: 3
    #22
    Been a long time girl.

    Hey There Bluerose,

    My name before was curecancer...been away for quite some time. I couldn't remember your name however, I was bouncing around and bam!!!

     

    Sure hope you doing well

    Someday I hope to see you in chat.

    Hugs,

    Patty

  • patty7
    patty7 Member Posts: 3
    #23
    bluerose said:

    You have lived with isolation and invalidation too long
    You have obviously lived with invaliation of your conditionn and issues too long because even though I told you that many of your issues are common among long term survivors I don't think it has sunk in as you have heard information that is just wrong for too long.
    I have survived a bone marrow transplant and I am not the only one out there, there are many others.

    I think your isolation is one of the bigger issues right now that is holding you back. You mentioned that you have moved back to the Vancouver area, I used to live in Vancouver for years. I was told that they have some great support groups through the Cancer Agency there, have you called and talked with them about that? I am thinking that if you can find a good group of survivors and a good program you will soon realize that you are not alone and your healing can then truly start. I had a great doctor in Toronto who moved to Vancouver to head up the BC Cancer Agency but unfortunately he has just retired although I'm sure he still pops in now and again to keep his hand in it all, he was very devoted.

    No matter how rotten you feel you need to push yourself to call one of these groups and force yourself to go and see for yourself, face to face, that healing from all of this is possible and you can survive all the side effects and issues we had no idea were going to happen to us but have.

    Keep writing and I will talk to you soon.

    Blessings,

    Bluerose

    So very true.

    You have very powerful words girl. I used to be so out going and I find myself isolating more and more. It's very nice to run back into you. I used to be curecancer and in chat we would have some good laughs here and there. It was a long time ago. Hope to catch ya soon around here. I just got a new computer that I am trying to figure out.

    Take Care of you Bluerose.

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

  • jeanlong1
    jeanlong1 Member Posts: 1
    #24
    NHL and RENAL CELL CARCINOMA SURVIVOR

    hello everyone! 

    i have been in remission since 2005 for my NHL and survived my kidney cancer in 2007 with the removal of my right kidney.

    i have been beside myself wondering WHY i am not the same person that i was pre-chemotherepy. my bones, joints and muscles just ache extensively every day. i was diagnosed with AVN in my hips, but find that the pain is very intense. due to having only one kidney, they limit what and how much medication i can take.

    i am so frustrated.... 

     

  • lyndy5649
    lyndy5649 Member Posts: 4
    #25
    Survivors follow-up studies

    Hi, I was lucky enough to be asked by my oncologist if I wanted to join such a group when I was diagnosed 11 yrs. ago, and I agreed in order to possibly help others in the future. Initially, every month I was given a questionaire sheet to fill out and discussed my emotions and general health with a counselor. Then it was every 3 months, then 6 and now every year. Baylor is now doing more studies on long term effects and have suggested certain cancers no longer need aggressive treatment that was used in the past, thanks mostly to those that were/are given the chance to be a part of the study groups.

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