Jan 18, 2014 - 5:43 pm
Hi, this is my first time posting here. I was diagnosed with Ovarian cancer 5 1/2 years ago and recieved chemo (Bleomycin, Cisplatin, and Etoposide) for 4 months then cancer free! Yay!!! However during the treatment i kept asking my oncologist about the increasing numbness in my feet. Each time I asked this question it was as if I didn't speak at all despite my other question being answered. I was frustrated but at the time thought "ok, well maybe he's just not worried about it". During the first 6 months of cancer checks I kept asking about this with the same results. Unfortunately at this point my insurance was able to dump me on a technicallity and I was unable to see an oncologist until just past my five year cancer free mark. During this time I found a wonderful dr that helped me get some of my checks and began caring for my increasingly painfully numb feet. We were both waiting for me to get insurance again to see a neurologist and a new oncologist where I now lived. My feet had become horribly painful and the numbess and weakness was moving up my ankle and into my hands by now, becoming worse almost by the week but, finally!, I had insurance again so off to my pain specialist, neurologist, and my new oncologist. Pain specialist basically says really nothing I can do to help stop the progression let alone make it better. Neurologist says same thing and does an EMG of my leg finding no reactions in my feet at all and only a little above that. So...off to my oncologist who I was certain would help to understand more about the lasting effects I was having (chemobrain seems to have only impoved somewhat as well but being a bit of a fruitcake isn't bothering me too much in fact sometimes its amusing). I tell her immediately about the neuropathy and she immediately cuts me off with "that'll be fine" I say "no you don't understand it's getting much worse, I can't...." "No, it'll get better" "It's getting worse!" "It'll get better!" I gave up after she said this for the fifth time. Apparently my oncologists must know something that my other doctors do not. Meanwhile, I'm starting to fall and drop things often.
I am only 39 years old and so very happy to be alive and understand that the chemo was the lesser of two evils, I really do! But I have a right to expect the doctors that prescribed these poisons in the first place to help me deal with ALL side effects from them and not just boot me out the door because my cancer is "cured". Leaving me alone, scared, and having to learn what I can from kind community health doctors that cared enough to help me research it.
Anyone else have similar?
On a nicer note, my oncology nurses ROCKED!!!
Thanks for listening. :-)