• Has anyone else felt as if their experiences commonly fall completely out of the norm?

    Asked by abrub on Thursday, November 1, 2012

    Has anyone else felt as if their experiences commonly fall completely out of the norm?

    In the numerous procedures and treatments I've had over the years, what happens to me tends to be what happens very rarely, whether it is post-op (I'm going through several very uncommon and unpleasant post-op situations right now, since my lumpectomy) or having the side effects to chemo that no one tells you about because they are so uncommon. In addition, my initial chest port torqued on itself, requiring a replacement port the next morning. A paper written by MSK about my cancer type and treatment refers to a number of patients, median hospital stay of 9 days, but one who was hospitalized for 29 days (yes, that was me.) And on and on... I'm learning that my body just doesn't react to intrusions the way a "normal" body does, as I've had more situations with the uncommon issues than have followed the expected series of events.

    Anyone else out there with me on this? For me, the rare event is following the so-called "norm" - expected path.

    8 Answers from the Community

    8 answers
    • Peroll's Avatar

      I have managed to hit the 5% side of the probability 5 times in a row so I am also not normal. So much so that my Oncologist readily admits that there is no written guidenance as to how to treat me at this point so he is making it up as we go for the most part. I guess there have to be some people that have the exact "normal" experience but I bet that at least some level of abnormal is the case for mose cancer patients, I mean is cancer "normal"? I would hope not. Since everone reacts differently to the assult on thier body that is cancer and cancer treatment the concept of normal may not be valid. I look at it this way, somebody has to be the pool of people that manage to beat cancer back and survive, no matter how many times it comes back, so I have chosen to be in the group that survivres and beats cancer. I am 6' 5" tall and I get told alot that I am tall. I respond: "No, I'm normal everyone else is short" Keep up the fight and remember that what ever you choose to view as normal, is normal to you.

      almost 4 years ago
    • nancyjac's Avatar

      For me, there is a big difference between norm and statistics. When it comes to cancer, I have little or no use for statistics. The are useful for researchers and physicians, but I have yet to figure out what good they are to me since I don't define myself as a statistic.

      almost 4 years ago
    • Genjen's Avatar

      I know what you mean! My Drs expect the strange out of me, even my disease doesn't follow the norm! You either have Cyclic Idiopathic Neutropenia or you have Chronic Neutropenia, I have cyclic chronic Idiopathic there is only 2 in the whole world and I'm one of them, makes it very hard to treat!

      almost 4 years ago
    • Nancebeth's Avatar

      Yes, I am a walking side effect. I had some "weird" issues after my bilateral mastectomy and reconstruction and as a matter of fact, am getting surgery tomorrow to correct an issue. I had some chemo side effects that were uncommon as well. I just know now to expect to get every possible side effect. Then if I don't get one, I am pleasantly surprised.

      almost 4 years ago
    • Harry's Avatar

      Yeah. I took a chemo regimen that is supposed to be very easy on the pt,atient, Rituxan + Bendamustine. But, not for me. My reaction was even outside of what is "normal" for patients who over-react.

      "Normal" is just a compilation of abnormal reactions--some one way, some another. Average them together and you get "normal." We are all unique. Embrace it.

      almost 4 years ago
    • ticklingcancer's Avatar

      Reading everyone's responses just proves that what they say is true...each person reacts differently to treatment. My Oncologist didn't expect me to get really sick...boy was he wrong. I was getting chemo 5 days a week. Cisplatin (which is similar to Carboplatin) and Etoposide. Did I say 5 days per week??? Same dosage everyday. By the time Friday rolled around, I was lucky to still be walking. They gave me two weeks off in between treatments to recover. It took the full two weeks for me to feel better. Just in time for another round. To make things worse, right in the middle of my treatment I ended up with pneumonia. I'm glad to have all of that behind me.

      almost 4 years ago
    • SueRae1's Avatar

      My experience with my Kidney cancer is so out of the norm - I had a nephectomy in Nov 1995 for stage 1 Renal Cell Carcinoma and was clean till a until July 2009, when several small lesions were discovered on my liver. 14 years is a long time and it is unusual but not unheard of for Kidney cancer to be dormant for that long, the weird thing is that it jump, usually Kidney cancer spreads through out the abdomen before it reaches the liver -the rest of my body is clean. The lesions have remained stable for the last 3+ years. I am also being treated for metastasized trip neg breast cancer - so far scans indicate just a small lesion on my liver. The initial stage 1 tumor, less then 1cm, no lymph nodes involved was discovered in Sept '10. My treatment for both cancer started in May of this year. So far my markers are fine and I am responding to treatment.

      almost 4 years ago
    • jenpwrs' Avatar

      Hi. This is a tough place to be. My cancer, appendix carcinoma, is very rare anyway. I was also diagnosed extremely late, at age 26, and give two months survival. I had a radical surgery, followed by complications, and spent two months in the hospital (mostly in ICU). Misery. More surgieries, 6 years of chemo...It's been nearly 10 years now. I remember how strange I used to feel in the chemo room. I was 27, looked younger because I was so sick and fragile-looking, and never saw anyone less than 25 years older than myself (small treatment center). Everyone would stare at me. Also, I've always been sensitive to medication. A benadryl knocks me out for three days. I've always had the rare side effects. My doctor now jokes that he only reads the fine print about very rare side effects when prescribing something for me. I guess I usually try to cope by using humor, but it can really be frustrating. Good luck to you.

      almost 4 years ago

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