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Been MIA and in pain

HarvestMoonHaven
Posts: 10
Joined: May 2013

Welp, I am back again. I ended up back in the hospital, again. I am having so much trouble just trying to find a compassionate doctor who doesnt tell lies!! I had to go have my ostomy stent changed, and it turned into a three day ordeal; one day was surgery BUT: they never knocked me out!! They were trying to remove the stent, with wires pushing in and out of it, with me awake. Can we say : OUCH???? Day two; promised it would be better, could even have a small breakfast before we left for the hospital; over a 100 mile round trip; got there, hours later they are finally getting around to me, and when they found out I had indeed eaten; NO surgery! Stent still blocked and home I went again. (mind you, I have PTSD from so much hospital time) Day three; promised a doppler would be used to help find a vein for an IV so they could knock me out. Hours later; they finally come around to my ...part of the waiting area for surgery..feeling like I am about to  be served up on a platter. They cannot find a vein, even with the doppler!! Ohh yea!!! So. am sitting here now; with nine holes in my right arm, "only" about four in my left but the right side, I have lymphedema and told them that! Grrrrrr. They ended up using something something "slightly" less long than a pic line on me to finally find a working vein...but I am brusied unbelievably bad now. *sigh* It is so hard to fathom beating 3rd stage ovarian, uterine and cervical cancers only to end up dealing with bladder, urethrea and colon cancers and now they are telling me my catscan showed nodules in both lungs. arrrggghh. And? my promised cancer advocate? non-existant! My cancer navigator? must be with the advocate; out to lunch!! This urologist promised me so much, including that he'd taken the time to read my records, that he had my medical history; and yet his secretary called here this morning to ask for the records, and the doctors, etc so that was a lie too; everything told to us was a lie. I have had nothing but lies since we arrived here in NC to supposedly heal. I am depressed, so stressed I cannot find peace in my sleep; nightmares every night and the doctor decided I "didnt need pain meds", that I needed to "come off" them. Really????? radiation poisoning, six cancers later, one surgery just a week ago; awake and I dont need help with controling my pain?? I have read all the information I could find on pain management and everything I read says that I have a right to have help controling this pain!! That in the shape I am in..I shouldnt be trying to "ride it out" and that due to my kidneys going thru so much, it is now affecting my heart; and it is 240/130 is not a good BP reading. I am at a total loss. I used to help others battle cancer. I know how to eat healthy, we just cannot afford to; I know I am supposed to have help in all this, but it led me back here instead; to the place I atleast know others are dealing with similar issues, understand the..stress, the helplessness and total ..befuddledment I am going thru. I am waiting, still for the call back promised this morning. somehow, at a bit after 4:00pm, I dont think its coming. I need help managing my pain level and am very worried when my wee bit of pain meds left to me; about three days worth now; runs out. I just dont think I can DO this. I am open for suggestions. I cannot get online as I once did; it makes my kidneys very unhappy to try to sit for any length of time; again; pain rules my life. To make it thru soo much, only to have these so called professionals totally lie to me, drop the ball, bigtime and leave me hanging is..unreal and I never, ever thought to be in this type of position. Where most think of me as soo strong, I know I am at a point of such deep depression, I even tried, without luck to find a psych doctor; a counsolor; someone and came up empty handed. if you have any suggestions, if you live in the NW part of NC, please, email me; arachne@surry.net cause I am as I said, not often online due to my pain and..welp; all of this. I do appreciate the feedback and hope to be able to BE of help as I once was..but it seems cancer has shadowed me all these years; 30 years of battling this and I am just..worn out. help!

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

You are one of a kind, a true survivor. 30 years battling 6 different types of cancer will make anyone feel frustrated and worn out.

I am so sorry about the uncontrolled pain and neglect you feel from the medical professionals. Do you have a friend or a family member to advocate for you? If you don't, PM me the name of your cancer center and I will try to find a social worker or onco-psychologist.

Hugs,

Alexandra

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