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Difficult times

forme's picture
Posts: 1162
Joined: Aug 2010

Hello Dear Ladies

I am still having such a very hard time. The pain is so constant and really bad. The doc has adjusted the pain meds, removed the percoset and upped the dose of the dilaudid and the roxanol.

I was able to get the results of the ct scan that was done on Tuesday. Mostly good. There is an area that has a large pocket of fluid. Since my white count is not to out of wack, they are unsure if this is an infection or possibly one that is just starting to brew.
I will see the onc on Wednesday to see if any thing has changed.

I was also told that the extreme pain mostly is from the way the onc had to "rip" apart all the adhesions from the many previous surgeries. Everything is now so raw and inflamed.
My reg doc said to expect the pain to remain bad for the next 4 to 6 weeks. His main goal is to manage the pain with strong meds, so that my body has a chance to rest and heal. I can barely get through a day right now, how am I ever going to keep this up for another month.

My doc is worried about the dehydartion and my low blood counts. he said that if I try really hard to eat little bits of nutritional foods and to try to keep drinking any thing, I may be able to not have any transfusions. he is not to keen on giving blood, unless there really is no other way.

I'll try my best, but am feeling like this is an impossible task. I can hardly eat, the pain becomes so intense.

Maybe if things remain the same by the begining of the week, I'll consider getting some i.v. fluids and some blood. I think it might be just the little extra I need to fight my way back to a healthy place.

I hope you all are able to enjoy the up coming weekend, summer has just passed me by.

If any of you have a thought or two about this latest news, I would really love to hear from you.

Thank you all for you kind and continued support. Just knowing that I can reach out to you, brings me great comfort.


PS I posted some pictures that my hubby took of the first day of surgery. They are on my expression page. I hope you don't find them to be to much..

AnneBehymer's picture
Posts: 739
Joined: Jul 2011

I do not know you yet but my heart goes out to you. I have fought pain through my battle and have just got it under control. It is hard to heal when you are always in pain it is so hard to want anything when you hurt so bad. You are in my prayers and thoughts keep up the fight it is worth it.

Love, Hugs, and Prayers

2timothy1 7's picture
2timothy1 7
Posts: 348
Joined: Jan 2012

So sorry you are in so much pain! Just knowing your reg doc said this was normal helps relieve your mind that something worse could be going on. It will also help to hear from onc on wed.

When I was going thru chemo I would get iv fluids(saline mixed with zofran) from home health. They brought it to my home and/or to infusion center. The infusion center would leave my port accessed so I could hook the fluids up. I did this for 2-3 days after each chemo round. Without it I would have probably become dehydrated. It was convenient also cause I didnt have to leave the house.

Hugs and prayers to you

Cafewoman53's picture
Posts: 737
Joined: Jul 2010

Wow I am sorry you are in this much pain. I am recovering from spinal fusion surgery which is not as bad as the month and a half that I spent in bed in extreme pain not able to walk so I understand some of what you are going thru. The only advice I can give you is to time your most painful activities to do when your pain meds are working the best, for example try to eat soon after your meds kick in.
I too feel like this wonderful summer has passed me by, I am hoping to be able to enjoy a glorious fall. I also found visitors helped to take my mind off of my situation. The one day I was very down worrying about pernament damage to my leg,my sister in law came over for a visit and changed my focus.
Good luck to you just take it one day at a time

Mwee's picture
Posts: 1341
Joined: Nov 2009

I'm so sorry to hear of all you've been going through. Here's hoping that your appt. this week brings good news.
((((HUGS))) Maria

kikz's picture
Posts: 1347
Joined: Jun 2010

at three this morning but erased it because it sounded so cliche. Take it a day at a time, focus on something positive, be grateful for what you have. But I guess that is why they are cliches. Some of them are true. It's just that they usually sound better to the person offering them than to the recipient.

I hope your pain eases a little (or a lot) each day. You are in my thoughts.


Glad to be done's picture
Glad to be done
Posts: 569
Joined: Jul 2012

I am sorry you are having so much pain. I hope you get some relief soon.


Glad to be done's picture
Glad to be done
Posts: 569
Joined: Jul 2012

I am sorry you are having so much pain. I hope you get some relief soon.


poopergirl14052's picture
Posts: 1185
Joined: Nov 2010

Sorry you are having a hard time but hopefully the meds will kick in. I would definitely get IV fluids with every chemo tx. To keep yourself hydrated...my mom told me better days are coming...lol and I ask when..Val

lovesanimals's picture
Posts: 1364
Joined: Sep 2011

I am so sorry you've been suffering so much. I too hope that the meds kick in fast because I am worried for you about the dehydration. I know how difficult it is to eat or drink anything because of intense pain. If the dehydration gets to a bad point, can you check yourself into the hospital for IV fluids and IV meds? I was admitted twice to the hospital this year (May and June) because of abdominal pains related to surgery adhesions. My pain pills weren't helping at all. The pains were preventing me from eating or drinking anything and I was afraid I was getting very dehydrated.

Sending you lots of hugs and praying that your meds do the trick for the pain. I know it's hard to imagine right now, but things will get better for you!


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