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TeddyBear
Member Posts: 13 ✭
Hi all,
I hope every one is as well as they can be.
I have a question about getting information. For me, 'Knowledge is Power'. There was a conference presented by 'Eisai' in Melbourne on 13th August, 2018 on 'Living well and living longer with Metastatic Breast Cancer: An update on treatment sequencing and supportive care, exercise prescriptions and RECALIBRATING for MBC patients". I understand that it was for health professionals. I emailed them stating that I am unable to attend but could I please have access to the webinar available from this discussion. I was refused!!! Now, I understand that this was a discussion for health professionals and I was told that a lot of the information will be over my head. But I am the one who is living with MBC and I would like to have had the opportunity to hear these people speak. There were 3 people speaking: Professor Fran Boyle and Associate Professor Prue Cormie (both of whom I have heard speak before and have a lot of admiration for) and Dr Elaine George (whom I have never heard of but since researched and would have loved to have heard her speak as well).
I am just very angry that these discussions are happening on our behalf but we are unable to become involved if we wish to. I understand that I am not a health professional but these three particular people have so much knowledge and I am searching for answers on how to deal with this disease that, to me, it seemed like a missed opportunity.
Am I wrong in reaching out for help?
Brenda
I hope every one is as well as they can be.
I have a question about getting information. For me, 'Knowledge is Power'. There was a conference presented by 'Eisai' in Melbourne on 13th August, 2018 on 'Living well and living longer with Metastatic Breast Cancer: An update on treatment sequencing and supportive care, exercise prescriptions and RECALIBRATING for MBC patients". I understand that it was for health professionals. I emailed them stating that I am unable to attend but could I please have access to the webinar available from this discussion. I was refused!!! Now, I understand that this was a discussion for health professionals and I was told that a lot of the information will be over my head. But I am the one who is living with MBC and I would like to have had the opportunity to hear these people speak. There were 3 people speaking: Professor Fran Boyle and Associate Professor Prue Cormie (both of whom I have heard speak before and have a lot of admiration for) and Dr Elaine George (whom I have never heard of but since researched and would have loved to have heard her speak as well).
I am just very angry that these discussions are happening on our behalf but we are unable to become involved if we wish to. I understand that I am not a health professional but these three particular people have so much knowledge and I am searching for answers on how to deal with this disease that, to me, it seemed like a missed opportunity.
Am I wrong in reaching out for help?
Brenda
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Comments
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Hi @TeddyBear,
You are so very right, yes, knowledge is power and I suspect that some medical professionals still yearn for the day when we went to the Doctors and did exactly as we were told and never asked any questions.
However, times have changed, what a pity you were refused, you are not wrong in reaching out for help, it goes such a long way in helping us, the women who have metastatic breast cancer, to understand and come to grips with our disease, we all want the latest knowledge and information on how to live well with this ,perhaps one of the bcna staff may have gone to this conference, especially as it was in Melbourne,
wendy551 -
Hello @TeddyBear
Isn't @wendy55 right - we must be a pain in the proverbial to want information for ourselves. You'd think it was our body, our life and our money !!
If the organizers won't help you, can you send a letter to any of the speakers asking for some information ?
Maybe BCNA can assist also.
Hope you can get the information you need, even if it is a brief outline.
Hugs Summer
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