Liz,
Like Dlaxague, I just lost a long post after struggling to compose it (*sigh). I know better, and that before posting a long one I should have "copied it", just in case it disappears. I'll try again.
At time of diagnosis and treatment, we are most acutely conscious of the experience and our questions about it, but much of the time we are not sure of our grasp of what is "normal" and what is not.
A major problem is that we tend to believe that our caregivers already know about any difficulties involved and "would have TOLD us" about them, as part of
their obligation to us". WE give THEM the benefit of the doubt, and fail to push them to do that part of
their job.
There are some here who do speak out about problems that so many suffer with, whether by posting in forums or in more public ways. There are some who actively raise a discussion with their caregivers about the problems they experience. But too many still just sit back, make excuses, and want someone else to do it. Some, like me, find that their caretakers don't even bother to document their concerns when they do talk about them. Some read what others have to say here, but don't bother to post. They rationalize and postpone. They "don't want to seem ungrateful" for the care that they do receive.
Here are some who are speaking out:
Our member, Idelle:
http://www.amazon.com/Your-Brain-Aft...rds=chemobrain
There is now another book cooperatively written also by a physician plus female cowriter,
http://www.amazon.com/ChemoBrain-The...rds=chemobrain
Here is the miserably short list that came up of clinical trials listed on clinicaltrials.gov that are being done, using the quest "breast" and "chemobrain". Probably using "cognitive dysfunction" might bring up even more:
1
Active, not recruiting Can Exercise Improve Cancer Associated Cognitive Dysfunction? Condition: Breast CancerIntervention: Behavioral: Exercise
2
Completed Computer-Based Training in Patients With Post-Chemotherapy Cognitive Impairment Conditions: Breast Cancer; Cognitive Symptoms; Memory DisordersIntervention: Device: Computer-based Cognitive Training
3
Recruiting A Multi-modality Imaging Assessment of Chemobrain Condition: CancerIntervention: Procedure: Imaging assessments
Are there any members here who are participants in these trials?
Can anyone who works in the medical field who is familiar with the problems we have help by listing some relevant training sessions specifically designed
for training medical providers about our problems, perhaps even some training sessions that actually include patient participation?
A.A.