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Kehylar 11-27-2012 04:38 PM

Problem with Port
 
Last Friday, I had to get a port put in for the chemo treatments I'll be undergoing. Normally, this is a minor procedure that doesn't cause more than maybe some discomfort for a day.

Not so for me though. I've been having some of the worst pain I've ever experienced. I didn't have nearly this much pain when I had my full hysterectomy a few weeks before, or other surgeries in the past. Well, maybe my knee surgery hurt as bad, but at least that wasn't unusual!

The doctors are totally baffled, they say everything went great, looks great, no evidence of anything wrong. The only theory is that my fibromyalgia is somehow in play caused all this intense pain. Right now I am taking Dilaudid and even that isn't really giving me much relief.

So they have me on complete bed rest for the time being, and if it doesn't get better in a week they will have to take it out and I will have to get IVs done every time I go for chemo (the horror!)

So just wondering if anyone has experienced anything like this? Not even necessarily a port, but any device put under the skin that caused a lot of pain that normal people don't have issues with? I'll feel better to at least know there might be some explanation for this. What to do about it though is the real question!

bluelakelady 11-28-2012 07:27 AM

Re: Problem with Port
 
hello and welcome,
i have implants in my eyes and a mesh sling for my urethra. the urethra thing has to be severed. fibro is camping in my obturator muscle where it is anchored so it has to go. chemo is a bummer at best. i am not a fan of ports as an ex nursey. tho if your veins are not good it is the easiest for you, supposedly. if you have good veins and don't mind the poke you have the right to say take it out. it is your body and they have to listen to you. one of my daughters went thru that and we discussed it. she opted to be stuck every time. fortunatly her veins stayed good for usage.
as for my eyes, they healed in a strange way that left me with prisms around lights at night so no night driving but oh how pretty my world is at night. giggle.
the urethra implant also causes vaginal pain, so glad i don't use that body part anymore. giggle. please feel free to reach out. cancer is a subject i am very familiar with and do volunteer work in that arena.
much peace,
bluelakelady

WoodsWalker 11-29-2012 05:11 AM

Re: Problem with Port
 
If you decide to keep the port, please make sure they give it a good rinse out after every chemo treatment. My mother had a mean, almost deadly bout with septicemia (sepsis)
due to what we all felt was a little neglect of cleaning the port enough.

Kehylar 11-29-2012 05:38 AM

Re: Problem with Port
 
Well, I am not at ALL fond of getting stuck, and it is usually very painful for me so I was really wanting to get the port done. But this is a level of pain I am not at all used to dealing with and it doesn't seem to be getting any better. I was mostly curious if any one else with fibro ever experienced something similar because the doctors are all totally baffled by it, but I don't really tend to have this kind of issue, my only real symptoms of fibro are tender points pretty much everywhere. That's kind of what I was thinking, if maybe the port happened to be pressing on a tender point?

bluelakelady 11-29-2012 07:27 AM

Re: Problem with Port
 
suggest you ask them to move it then. very possible it is on a tender spot or just near a nerve. i do not mind needles at all. giggle. i watch. as long as i can see i can relax and breath into it allowing my skin and body to open easily for the needle. it's a meditation thing i learned and it's easy.
much peace new friend,
blue
ps. woodswalker is right on the cleanliness bit. be sure you are well cared for and know how to care for yourself at home. personally i am not a fan of ports. they are an opening for bacteria and germs to enter the body. i'm an old school nurse from long ago.

Kehylar 11-29-2012 12:57 PM

Re: Problem with Port
 
Yup, that's what I did, I am going in for my first chemo session tomorrow, we don't want to delay that to deal with the port issue, so while I am there, they will take another look and if I am still having so much pain they will set me up for another surgery with the radiology dept that put it in. It would be up to them if they will agree to try moving it, which I would like to at least try, before removing it completely. Or maybe when they go in they will see the cause, that would be the best obviously!

bluelakelady 11-30-2012 06:49 AM

Re: Problem with Port
 
dearest new friend,
i shall spend this day in meditation for you. may it be as easy on your sweet body as possible and heal the imbalance within. never forget it is your body, in the end you decide what is or is not to be done to you.
peace,
blue
ps. do you have a good support system at home and in your community?

Kehylar 11-30-2012 06:58 AM

Re: Problem with Port
 
Thank you so much for the prayers! I have been asking God to help resolve this issue for me, and last night I was lying on the sofa and realized, that it was the first night where the pain meds seemed to be bringing the pain down to a level that I was not even noticing it at last! That is a big improvement, I slept well last night and could even sleep on my side a bit without it bothering me, I was fairly painful this morning but once I was up and about I have been doing much better. I think this may have finally turned the corner and may be starting at last to heal on its own, so I am holding off on doing anything else for now. Yeah!! I am here hooked up and getting my first round of chemo so just praying that all goes well and I don't have too severe side effects to deal with. But if I do, I will just deal with them as they come!

bluelakelady 12-01-2012 07:30 AM

Re: Problem with Port
 
hi girlfriend,
i am so happy your body decided to allow the port!! how did your first time go? if you know your cocktail maybe i can help you differentiate the fibro from the chemo as you go thru this adventure. always remember this is your body. only you decide what you will or will not do to stay alive. please also ask your doctors about post chemo syndrome and how your cocktail will affect the rest of your life.
one of my daughters is a cancer survivor. she works, goes to school and raises two amazing kids, ages 5 and 7 and is a wife. my son in law is the best son a mom could ask for.
sending you healing love on the winds of earth.
peace,
blue

Kehylar 12-01-2012 08:12 AM

Re: Problem with Port
 
All went well, no issues with the chemo infusion. It hurt a lot to get the needle in the port, but I'm just so glad that pain is slowly starting to resolve, so shouldn't be as bad the next time. Not really feeling any effects yet from the chemo, feel normal today.

My cocktail is Taxol/carboplatin. So I'm definitely very worried about things like chronic joint pain or neuropathy which are not uncommon with Taxol. I know I'll lose my hair and have fatigue, etc. I'm using Melatonin which I've heard might both help make chemo work better as well as reduce side effects, and keeping my protein intake high, but other than that, not real sure what else to do.

bluelakelady 12-02-2012 08:38 AM

Re: Problem with Port
 
hi,
i wrote you a long note yesterday and accidentally closed the window. giggle. drink at least half a gallon of clean water a day. flush that junk out. i suggest a vegan protien drink as meat takes between 3 and 7 days to leave the body. we were not meant to eat meats. also stay as active as possible during this. pedealite, i think it's called is for kids to stop vomiting and i have found it useful for clients who experience reactions to the anti nausea pills. eat tiny meals as you may not want foods. shave your head. i did 14 years ago and never stopped. finally found the perfect doo for my face. giggle. bald on a woman is beautiful and i am told often how striking it looks.
get lots of rest so your fibro does not freak out. be optimistic, it will be harder as you go along to keep that attitude. most of all let fear go. fear causes us to make poor choices in life.
thank you for allowing me to be here for you. it is an honor to serve.
peace,
blue

Kehylar 12-03-2012 09:32 AM

Re: Problem with Port
 
Sorry to hear your message got lost, that is always so frustrating! If you use Firefox or Chrome for your browser, you may want to look into an addon/extension called Lazarus...I use it myself, it saves all the text you enter in most online forms, so if it gets lost, you can easily pull up a history and retrieve it. That has saved my butt a few times!

Anyway, thanks for the information, I'm following most of those now, particularly drinking a lot! I'm not overly worried about the hair loss, I've never really liked my hair much, so maybe it will grow in different like it often does after chemo! I did get it cut short so it won't be so much to fall out.

Well, of course since I was worried about joint/bone pain that is the first thing to show up! It's pretty rough, I feel like I was forced to march for hours, my body from the waist down just hurts something awful. Hopefully it won't get too much worse, it's not too bad yet that I can't live with it, but not very fun for sure.

bluelakelady 12-04-2012 06:45 AM

Re: Problem with Port
 
hi,
what about a nice hot bath with bubbles? wish i could send you my hot tub. giggle. yes, the joint pain can be hades i am told. i have seen big boys cry. giggle. hey there are no rules when it comes to cancer.
i am hoping your body does what mine tends to do, fibro retreats when someone bigger hits the body. fibro is a chicken in my body.
how often will you have treatments? what meds were you given for side affects? i am so nosy, giggle.
may fibro leave you in peace as you walk this difficult road alone. we may be at your side but you do walk alone when it comes to cancer.
much love and many hugs.
peace,
blue
toasting you with a glass of spring water! cheers kiddo!

bluelakelady 12-05-2012 07:33 AM

Re: Problem with Port
 
just dropping in to say i am thinking of you today. hope it's not too rough a day for you.
peace and energy,
blue


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