pain , anxiety, broths, drug trials: surviving anal cancer

zetapup Member Posts: 10 Member
edited February 2022 in Anal Cancer #1

hi fellow cancer fighters!

a few posts mention anxiety after diagnosis ... I suffered intense anxiety too, worsened by the pandemic for sure. my docs/nurses were ok , not great, with this. if the diagnosis makes you panicky, make sure you bring a companion/advocate to all appointments, in case you have strong emotional reactions. ask for meds to help you cope. this is a BFD, and you need + deserve help. no shame, ok?

we all mention pain. yup, in week 5 the pain increased substantially, and even with the loosest bowels, bms were off the chart painful. apparently, anal cancer and throat cancer are notorious for pain. here's my two cents. i could not tolerate marijuana edibles/smoking. oh well ... i was prescribed hydrocodone (like oxy) as a pill at first. it helped with radiation burn pain, rectal and vaginal pain. made me very loopy, as i was prescribed larger doses at shorter intervals, i leaned on caregivers much more. tried to balance my checkbook in week 6 ... hah!

in week 5, my radiologist sent me to the pain mngt dept at my cancer treatment center, and they ordered a locally produced compound of opiod painkillers and valium, in a petroleum base, to use as a suppository. i was like goldilocks: first one was way too strong, second one was too weak, third version was just right. the pain docs just worked with me for a few days til we got it right.

two extra notes about pain meds. once you start using opiods, they give you Narcan: you and caregivers will get accompanying literature so you can understand. please be real about it all. your docs may not keep close track of how much pain meds you have on hand as the pain subsides a few weeks after treatment ends. as always, stay ahead of the pain and use the meds to remain as comfortable as possible. in my case, once the pain began to subside weeks after treatment, i suddenly could get by with a lot less opiods. knowing the inherent dangers of these meds, i asked my caregivers to dispose , properly, quite a few doses of pills and suppositories so that the twin problems of 1) addiction 2) vulnerability to theft + abuse by others were minimized. again, that was our doing and the prescriptions were not cancelled right away by my docs. i certainly had plenty of opportunity to over-medicate.maybe all this is already obvious to you, but this newbie learned a lot along the way.

a random note about nutrition: nourishing broths were my go to foods even at the worst of times.

another random note: i was a patient at a top notch teaching / research hospital. turns out my chemo doc is quite the research fiend. after my treatment ended, she made an attempt to recruit me to her study (genetic therapy). she completely overestimated my risk of recurrence and oversold benefits from trial participation in order to make recruitment appealing. i read the fine print in the contract and i was absolutely blown away by her manipulative behavior. before treatment , when i first learned about her research, i thought i would be happy to help out, but when the time came, the terms were, for me, ridiculously burdensome. maybe you will work with better researchers and say yes ... but in my case, this experience was shocking. i said no and i have no regrets on that score.