Another Conference to attend.

24242
24242 Member Posts: 1,398
edited March 2014 in Breast Cancer #1
Hello Ladies,
Just wanted to ask you all, who read these posts/chats, a question to think of since I am attending the Living Well With Cancer Conference II this coming weekend. I want to be a voice out there for sites like these ones. I have been getting support and love from all of you this past year, that was very needed.
The Question is: What positive effects have cancer web sites had on you while fighting or surviving cancer? I would be interested on anything you might share.
In the time I have been here I have made some truly good friends I will cherish forever. You all have had on impact on how I am able to cope with this life of mine.
In my province our Cancer Association has made it clear they think that often the information patients get is not accurate and may cause them to deny treatment based on poor or misinformation. I think we all can agree, at some point, we haven't had enough information leading us to search for more information on our own. We only want to be clear in our understanding. That is why I am here.
I will always be grateful for you all and this site.
Thanks always for sharing,
Tara

Comments

  • ktinkey
    ktinkey Member Posts: 170
    #2
    Tara,

    Whatever information I get on the internet I take to my oncologist and discuss it with her. If not for these sites, there is info out there I would never have had access to. Your doctor cannot possibly give you all the info. We, as patients, have to be our own advocates of our health. I believe knowledge is power. The more you know and understand the disease, the more you can decide what is right for you. There is information on the web, that the medical community wouldn't agree with, but after speaking with your doctor, I believe that ultimately it should be my decision on what care treatments I opt for. Medicine is still a science, therefore, all the research has not been done and all the answers haven't been obtained.

    This site lets me know that I am not alone in this battle. I've been a part of support groups. They helped me, but this site I can log onto anytime of the day or night, in the privacy of my home, and find help. That is so positive! I've made many good friends here. Friends I would have never met in my usual walk of life because of distance. Our shared experiences know no distance. We are bound by them.

    God Bless,
    Kathy
  • jeancmici
    jeancmici Member Posts: 665 Member
    #3
    ktinkey said:

    Tara,

    Whatever information I get on the internet I take to my oncologist and discuss it with her. If not for these sites, there is info out there I would never have had access to. Your doctor cannot possibly give you all the info. We, as patients, have to be our own advocates of our health. I believe knowledge is power. The more you know and understand the disease, the more you can decide what is right for you. There is information on the web, that the medical community wouldn't agree with, but after speaking with your doctor, I believe that ultimately it should be my decision on what care treatments I opt for. Medicine is still a science, therefore, all the research has not been done and all the answers haven't been obtained.

    This site lets me know that I am not alone in this battle. I've been a part of support groups. They helped me, but this site I can log onto anytime of the day or night, in the privacy of my home, and find help. That is so positive! I've made many good friends here. Friends I would have never met in my usual walk of life because of distance. Our shared experiences know no distance. We are bound by them.

    God Bless,
    Kathy

    Tara,

    I could have found all the medical information I wanted from websites, but this forum - having people in the same boat to talk to - was an added dividend.

    I could not have received encouragement as here from an inanimate website. I have made some good friends here on the site and we write directly.

    I feel a kinship with all of you here. When I don't see a person anymore I wonder how she is doing. and I mourn for those who leave us not because of choice.

    CSN is a community unlike an informational website which is invaluable - more from the medical side. Here we get emotional support - lifting of our spirits - sympathy when we need it - all human elements so important at this time in our lives.

    Hope this helps.

    good Luck on your presentation.

    Jean
  • sueholm
    sueholm Member Posts: 205
    #4
    Tara,in response to your question....regardless of the information that we get,or don't get, there is just no substitute for talking to others who are going through the same ordeal when we go through treatment for cancer. Even if our doctors keep us well informed there are a myriad of small questions and fears that can be addressed by fellow sufferers rather than taking up the doctors' valuable time. Then there is the simple matter of comfort from others as we go through the trials of chemotherapy, surgery and recovery, at all times of the day and night. And there is nothing quite like someone who has lost their hair telling you that yours might come back curly, as theirs did!! Can there be ANY doubt about the value of cancer sufferers being able to keep in close touch, and support each other through their illness?
    Love Susan
  • kat02
    kat02 Member Posts: 76
    #5
    Tara,

    I don't know what I would have done without sites such as NCI or the University of Pennsylvania Onconolink. They have provided invaluable information that my doctors often don't have time to provide. I also have found the more controversial information beneficial. The information that I have discovered has enabled me to be more informed when I meet with my doctors. This in turn has opened up more treatment options for me. The web has been very positive in my experience.

    I am thrilled that I found this support group in November. I was not physically or mentally up to attending a support group. This online support has been amazing. Doctor's never fully prepare you for treatment or surgery. After my surgery when I was having difficulty with my drainage tubes and various sensations, I found this site. I asked for help and received almost immediate support. It was incredible. Since then this site has provided me with inspiration to keep on fighting. Everyone here is amazing. You can't receive support like this from any other sourcs.

    Best Wishes with your presentation.

    Laura

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