Chemo Brain/Cognitive Issues

blueroses
blueroses Member Posts: 524
edited March 2014 in Emotional Support #1
A lot of cancer survivors can relate to 'chemo brain', the fight goes on between yes it exists and no it doesn't as far as past cancer treatment being a cause. But regardless of what caused it, stress or drugs or radiation or all of the above it does exist and many of us know that. Because of my initial treatment for NHL being 20 years ago I have felt changes in my memory and now cognitive functions playing a bigger part in my everyday. Yesterday I went to yet another specialist (rheumatology) and wow was it ever clear in there that something was so different in how I functioned during the exam. First of all I made a two page explanation of my symptoms for the doc and nurse to read first since my memory is truly bad and the worst part of it is that I tend to very often leave out key parts of my symptoms - just forget them - then I leave a doc's office and realize what I have omitted - it's awful. Anywho, the nurse and the doc said they didn't have time to read it. I was stunned - these were my SYMPTOMS - kind of necessary for a diagnosis I would think. I tried to press the issue with the nurse she flatly refused to read the 2 pages which would have taken 2 minutes tops. The doc, same thing. That's another posting about how I was treated but the point of this one is that I was stunned to realize that I was really depending on them to read the notes as I couldn't give a clear picture of what was going on on my own anymore. Then the doc did his exam and left the room and I then realized that I still had no diagnosis and the worst part was I DIDN'T ASK. Nope. That is sooooooooooooooooooooooooo not me. Normally I would have said, 'okay so if it isn't this and it isnt that what is it then?' or at least ask him what his best guess would be but nope I just let him walk out - and I had time to ask him too he wasn't in a rush. Man, floored me. He only had me go and get some blood tests to add to the exam but no xrays or any ideas as to what was up. I outlined how much this was effecting my life as well, siting examples of how I function with the pain etc. and he cut me off instead of listening for why I was telling him that particular issue. Also I just find that I can't answer questions quickly, I need more time to think about it than I ever did before - and you know how docs and nurses are famous for rapid fire questions? I just can't do it anymore. I find myself just spouting off something and that usually results in half information or information not properly explained. Anywho I wondered if anyone else was having these kinds of cognitive issues and memory problems, more than just forgetting. Blessings, Blueroses.

Comments

  • green50
    green50 Member Posts: 312
    #2
    I'm listening
    Well I am listening Bluerose. Can't believe how some drs put you off like that. I am lucky both oncologist and md listen to me. That is also probably why you forget to tell them some things because they ignored you.
    HMm
    I hope you get some answers
    Prays and Big Hug
    Sandy
  • blueroses
    blueroses Member Posts: 524
    #3
    green50 said:

    I'm listening
    Well I am listening Bluerose. Can't believe how some drs put you off like that. I am lucky both oncologist and md listen to me. That is also probably why you forget to tell them some things because they ignored you.
    HMm
    I hope you get some answers
    Prays and Big Hug
    Sandy

    Thanks Green
    I think that after trying to get answers about all of this for over 15 years adds to the stress when I go into a new situation too. Trying so hard to get out what I know I have to before they leave the room. The biggest problem is that I can't seem to handle rapid fire questions fact and effectively anymore. I just give quick, poorly thought out answers (often omitting key info because I am rushed) and then they get the wrong impressions of the situation. Happening over and over now. Oh I don't know, sometimes I feel as if part of the problem is that I am giving up in even trying to express myself effectively to them. It's a mystery. Thanks for your comments though Green. Hugs, Blueroses.
  • slickwilly
    slickwilly Member Posts: 334 Member
    #4
    blueroses said:

    Thanks Green
    I think that after trying to get answers about all of this for over 15 years adds to the stress when I go into a new situation too. Trying so hard to get out what I know I have to before they leave the room. The biggest problem is that I can't seem to handle rapid fire questions fact and effectively anymore. I just give quick, poorly thought out answers (often omitting key info because I am rushed) and then they get the wrong impressions of the situation. Happening over and over now. Oh I don't know, sometimes I feel as if part of the problem is that I am giving up in even trying to express myself effectively to them. It's a mystery. Thanks for your comments though Green. Hugs, Blueroses.

    Hi Blue
    I think its pretty clear that we all get tired of dealing with doctors. The ones that don't look at our medical files or letters we have written. And yes I have written letters so I didn't forget everything. Its even worse when we go to someone that has a totally different view than our other doctors. Our long term disability insurance or some Gov't program requires an opinion from their doctor and he screws us up worse. Someone has a bright idea to cure us and makes our life worse than it already is. In your case I think I would try to find someone else to help your situation. It seems like your beating your head against the wall there. If your the patient and they are not willing to listen to your symptoms then your not getting anyplace. I guess I could become an alcoholic so the symptoms I have would fit into their easy to solve catagory. Then they would not have to think so hard about chemo brain. Love you Blue Slickwilly
  • blueroses
    blueroses Member Posts: 524
    #5
    slickwilly said:

    Hi Blue
    I think its pretty clear that we all get tired of dealing with doctors. The ones that don't look at our medical files or letters we have written. And yes I have written letters so I didn't forget everything. Its even worse when we go to someone that has a totally different view than our other doctors. Our long term disability insurance or some Gov't program requires an opinion from their doctor and he screws us up worse. Someone has a bright idea to cure us and makes our life worse than it already is. In your case I think I would try to find someone else to help your situation. It seems like your beating your head against the wall there. If your the patient and they are not willing to listen to your symptoms then your not getting anyplace. I guess I could become an alcoholic so the symptoms I have would fit into their easy to solve catagory. Then they would not have to think so hard about chemo brain. Love you Blue Slickwilly

    Thanks Slick
    I am used to them not listening to some things I say but this was so blatant, just refused to read the symptoms, it was shocking actually but what shocked me even more was when I didn't take him to task til I got him to read it all. I don't trust his diagnosis because he didn't read all the symptoms, why would I have any faith in him if that's his take on it? I am going to wait and see what he said to my GP in his finding letter and then discuss with her what I experienced and probably after that I will ask for a second opinion or maybe even go back to him with how I felt about the first visit - not sure what I will do after this. Maybe something will show up in the blood tests he wanted. But I know I sure am not the only one who goes through this kind of thing, not by a long shot. So many people go without a proper diagnosis for years and years, as I have with this part of my medical issues, driving you almost nutso in the process. Luckily I have had the same GP forever and she believes in me and will help me find another doctor who might be able to help. It's a good thing I have her. Anywho, thanks for the supportive words Slickster. Love you back, Blueroses.

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