lakeswim wrote:lovelife789 wrote:the whole self identity is diminished into a statistics
I don't want to hijack VeggieLvr's stream but I wanted to tell you that the sentence above really resonates with me. It's all about the damn statistics. But I guess those stats have gotten us some of the treatment we have. I try to remember that when I get mad when they cite yet another percentage.
So much of what you said hit home - but I am curious about the chinese stretching. Where can I find info on that? I find myself lying around too much already.
AND I am curious about the first bite thing. Mine seems bad after just this first round. So, it gets worse and worse? How did you eat? I start to dread it. I feel for you if yours was particularly bad.
Lastly, my infusion nurse and my homecare nurse both told me that the experience I have this week (after my first FOLFOX infusion) will be how it will be for all the rounds. But everyone here says it gets worse! Who to believe? (I believe the patients!)
Thanks for your post.
I found the first bite thing annoying and it does get worse with time if you don't lower the dosage or take breaks. I found that true for all of the symptoms.
I have a friend on another board and he was Stage II and in his mid-70s and he had other health problems. He had a very rough time with FOLFOX and he quit after two rounds. He stated that he did the research on the numbers and that he wanted quality of life over quantity of life. He told me that we all have to make our own individual decisions. I'm Stage III so my considerations are different from his and I don't have the co-morbidities. Our approach was to decrease dosage and take breaks. The second round of XELOX clobbered me. Could I have continued at full-strength? I'm pretty sure that I could have. But I wouldn't have been able to work full time (well, I could be present but I wouldn't be giving my employer what they pay me for). A lot of other stuff wouldn't get done too.
Those statistics drive research and development and what gets worked on. And it drives treatments. I see people on clinical trials getting half the chemo that I got and think: that would be really nice. And I know that treatments will get better in terms of less pain, less treatment and less loss of functionality. Just not in time for me. But I do benefit from what people went through before me.
On first bite, if you forget, and, it's easy to do, you just get the pain. If you can prepare, then it's mentally easier. I had the painful tears too - and the answer to that is not to cry. But sometimes you do. I find that being able to mentally prepare for pain makes it less of a problem - to some degree.