Advocate for Yourself!

DiJohn

Hi all! I previously posted about the problems I have 9 yrs post chemo. What i wanted to say was that when I started having side effects during chemo, my Oncologist and the pharmacist said they had never heard of those side effects and it couldn't be from my treatments. After chemo when my neuropathy really started kicking in, my Oncologist again said it wasn't from chemo and I should get checked for an autoimmune disease. Finally, 2 Neurologist diagnosed me with post chemo neuropathy that could get better or worse. It has continued to worsen. No one ever said anything about the ringing in my ears, that has progressed and vision bluriness, that has progressed. I had never been seriously ill and even though I told my care team , it was brushed off and I assumed it was just me freaking out. It took 2 yrs for me to get disability because of my Oncologists notes, which I was shocked to read. In black ink it said no complaints of neuropathy. I went from being a Licensed Massage Therapist in private practice, raising a year old son, husband, dogs, cats and riding my horses to now if I can play in my flower garden for 2 hrs or walk my dogs for 20 minutes, its all I can do. I never posted about my side effects because I didn't want to scare anyone but if you intuitively feel something isn't right, be persistent. The severity of my situation is rare but after reading other posts, I'm not alone in this. I wish I had pushed more about my condition, it may not have changed my outcome but now I'll never know.