Sunday, April 15, 2012

being forgotten

march 2011. lonliness and being alone, except for me, day in and day out, was really weighing on bec over the last 1 1/2 years.  this is a response to a fb message from an on-line friend that she had never actually net in person. again, the thing for her friends to take away from this is, do better in the future for those you love.--mom

"hahah, i have never been cancer free in the 5 yrs since being diagnosed.


i just make having cancer look good i guess. maybe thats part of the problem. people can't really imagine me as being mere moments away from death at any given time (which, theoretically i am, no matter how dramatic it sounds). i've been on chemotherapy in some form or another consistently. sometimes its a treatment i get every two weeks, when i got real lucky once on one particular drug, it was once every three weeks...that didn't last long tho. the most recent treatment plan, i had to go in EVERY single friday. i suppose that aaaaallll those dear close friends of mine who were always saying "if you ever want company at chemo, or need anything from me, please tell me" i suppose EVERY week just was a bit too inconvenient for them.

i'm fine. and i'll be fine i'm sure. its just kinda funny that i can use FB as a way to unknowingly 'test' certain people (i mean, of course people whom I've met on-line ...while you guys mean a TON to me, b/c of course you guys are some of the only people that truly understand the whole intestines thing, and if i have to freak out about something kpouch related, well hell, i dont know where i'd be without your help...but i'm more refering to those friends on here who i've known long before FB ever existed, etc)

but its funny to me...i've noticed that if i keep quiet on FB, and don't put up status's like "keep me in your thoughts/prayers tomorrow for this big test/procedure i have!" kinda things, that certain people are so barely in my life anymore, they don't have a clue if i dont post about it on FB or send out a mass email. I only started to realize this b/c as of late i've just gotten tired of having to feel obligated to keep everyone in my social circle 'up to date' on me. Y'know, everyone always says "well, keep me posted on how things go" etc. So i felt obligated to send out these big ol' group emails, OR post things to FB about whatever the very latest updates where. And when i started to get tired of doing that (mostly cuz i was tired of saying the same things over n over, and i've recently been avoiding talking about cancer except to my doctor as much as possible. but the less i updated, the less i heard from so-called "good friends". Then I realized, "Oh, Its b/c they aren't even bothering to do their OWN checking in on me. So if I'm not updating them, then they apparently think everything must be peachy with me. And over all that, I realized that just in general, i barely hear from some people i used to consider very close friends. Hence the start of the tone in my status update.

its' all just me being moody...but also being realistic. its been five years that i've been dealing with cancer, so its not that i'm not used to the different ways that people react to it, and to losing and also gaining people you wouldn't expect. but as of late, it seems like its just about EVERYone around me thats gone...everyones got a busy busy life. and mine is just right here at a standstill...continuously in treatment, therefore unable to make any upward movement in my life. but hey...i'm still alive, so apparently, according to doctors, THAT should be good enough for me. heh. suuuurrree...

 with all the crap i have going on right now (the most current issue has to do with some fluid collecting in my pelvis, and this cavity or absess that seems to have opened up in the pelvis. so they put a drain tube in my buttcheek...yes, the actual fleshy cheek..not my buttHOLE, but the cheek. and attached to a leg bag. it was draining off the fluid, but then it started to drain out urine, and i was unable to pee the normal way, and now they're talkin bout if the antibiotics and keeping this drain in, doesn't allow whatever fistula is there to heal up on its own i may end up with bi-lateral nephrostomy drains/bags permanently...i think that'd be the worst case from this particular scenario) but with all of that...my kpouch? still just beautiful. working like a champ. i only empty once, maaaaybe twice a day. for me, that was unheard of. but hell...i'll take it! heh."

..

1 comment:

  1. Thank you for posting Mary. I think's a very valuable lesson learned for all. My mom told me when I got diagnosed at 12 that I shouldn't tell anyone, cuz they wouldn't understand and/or act differently. I thought it was the meanest thing for her to say. But as I learned her words held true, it was just that she didn't want my feelings hurt on top of being sick. So, I rarely told anyone. Then, I found the jpouch.org and facebook so I "came out". It was interesting to see what *friends* bolted and who actually accept me for all I am and am not - and still do (it's a handful to be honest outside the kp community).

    I started reading Beccas forum posts, so I reached out, and little by little she trusted me and let me in her visiting world. Once this happened, I prayed she'd get well but knew the risk was that I may get hurt loosing her. My hubby was worried if my fragile nerves could handle this friendship. IT WAS WORTH ANY HEARTACHE I HAVE NOW just having her friendship. I knew she'd never turn her back on me and loyalty goes along way. I'd text her when I'd be in the hosp puking for 3 days and she'd reply with TOTAL support. Not, a reply like 'really, well that's too bad, but gee, "my cancer etc..SUCKs"'. She never made my little puking something unimportant compared to her tubes, chemo, blah blah blah. She humbled me. Showed me acceptance and perspective. And, will always be my hero.

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