Thank you for being here ...from a newbie!

qv62

Missy3 said:

So much wonderful information

I had to read and re read all this wonderful info. It is filled with such valuable information that I am trying to figure out how to store it in my favorites for continued reference.  I wish there was a way to have sticky notes at the top of each forum for valuable info such as this.   Could keep it organized and easy to find.  

 I need to keep the info accessable as everything is moving so fast and is overwhelming my brain bank storage. Not to mention its a bit foggy in there too 

Well a new symptom is insomnia.  I am laying in bed with my chemo beside me at 2:30am.   with all the nausea and just plain yucky feeling to add to the intense pain from radiation burns    

This last visit to rad/onc determined it was time to turn the pain meds up a notch. I am now on fentanyl patches around the clock with hydrocodone for break through pain.  Threw in a little Ativan to help me relax from the stress of nausea and insomnia.    Pills can only do so much though.  Sometimes waiting it out is what we have to do.  Hope I am making sense.  At least I am a little mellow right now. 

 

Since i I am not sleepy maybe this would be a good time to let you know more about me:)

 

i am 58y old and I work as a nurse in healthcare. I have worked at my current facility for 22 years.  

i do love where i work and the people that I work with. My background is surgical nursing and supervisory roles. 

I would like to interject here that none of my background even remotely prepared me for this treatment course. I am as sincere as I can be that I became more prepared by coming here to this forum than all my investigating and talking to those in midst of my care.  I am convinced that this is such a rare cancer and the treatment even though is streamlined and protocols followed precisely ...... Can't touch the insight which comes from actually living it. 

I have some thoughts to help make the process better for the next group behind me. I have been talking to my rad/onc nurse and offering suggestions already.  She is very receptive.  But  I told her that I have a long way to go before I feel mature enough in my experience to form a plan.   

Without a doubt.....,, I will be hanging out here for a bit because I feel very comfortable and comforted!

i did go back and read what I could,on all of you guys to kind of get an idea who everyone is and what you journeys have been like.   All I can say is may God bless you all for all you are giving back.  you come here to give back because you care and I want you to know that you are wonderful!!!'

thanks for listening to my rambling.   Starting to get sleepy now!!!!  

cant miss tomorrow it is tx # 21 yah!

Missy xoxoxo

Missy

Glad you were able to update us today, hang in there, you will soon be in the final stretch. As for all the good info and keeping it, you may want to copy and paste certain sections into a Word document that you can access when you want to look back. I drove myself crazy searching for something I read on the forum, once I found it for the second time I copied and pasted it to save and I am not computer or tech savvy so if I can do it I'm sure we all can lol. Good luck tomorrow

sandysp

Missy3 said:

To All

Thank you to each and every one of you who replied to my "rant."  I have been meaning to reply sooner but, the fatigue has become so pronounced that I haven't had the energy to type a sentence lately.  I promise that I will thank you all properly once I regain some much needed energy. 

I did manage to work a total of four hours since my last post, but I paid dearly.  I have finally realized that you guys are right.....recovery is on going and can't be rushed.  Afterall, I am just mid way into treatment.  Friday was treatment #18 and this Monday starts my second round of chemo.

I have lost a total of 14 pounds already which concerns me with the up coming chemo.  The radiation burns are really starting to hurt.  I am taking pain medicine pretty much three times a day because I have also developed tenesmus (rectal dry heaving) which is extremely painful.  It seems that the main treatment for that is ......more pain medicine.  No wonder I am so tired.

I am really having trouble finding foods that I can tolerate lately.  I realize that a low residue diet is a must at this stage.  But, I think I am finding that if it isn't soft and mushy then I can't digest it very well.  Maybe I need to look into baby food.  I have made myself drink the Boost everyday even though I don't like it.   I am finding energy drinks like Gatorade are becoming nauseating due to the high fructose.  This is frustrating because I know if I don't get a handle on this then I will be back in the hospital again.

Thank you guys again for having such big caring hearts xoxo

 

Insomnia - a reaction to your pain meds?

When I had my facelift I was given Hydrocodone for pain. It gave me insomnia. I switched to Tylenol after two days and it was so much better. (Of course, I am glad I had stronger pain medicine the first couple of days).

The doctors gave me morphine tablets and oxycodone break through. I slept like a baby day and night.

Keep a small fan blowing on your burns. My treatment was in the summer so this was a no brainer but wow, what a help

Just a thought.

Good luck,

Sandy

Ouch_Ouch_Ouch

Missy3 said:

So much wonderful information

I had to read and re read all this wonderful info. It is filled with such valuable information that I am trying to figure out how to store it in my favorites for continued reference.  I wish there was a way to have sticky notes at the top of each forum for valuable info such as this.   Could keep it organized and easy to find.  

 I need to keep the info accessable as everything is moving so fast and is overwhelming my brain bank storage. Not to mention its a bit foggy in there too 

Well a new symptom is insomnia.  I am laying in bed with my chemo beside me at 2:30am.   with all the nausea and just plain yucky feeling to add to the intense pain from radiation burns    

This last visit to rad/onc determined it was time to turn the pain meds up a notch. I am now on fentanyl patches around the clock with hydrocodone for break through pain.  Threw in a little Ativan to help me relax from the stress of nausea and insomnia.    Pills can only do so much though.  Sometimes waiting it out is what we have to do.  Hope I am making sense.  At least I am a little mellow right now. 

 

Since i I am not sleepy maybe this would be a good time to let you know more about me:)

 

i am 58y old and I work as a nurse in healthcare. I have worked at my current facility for 22 years.  

i do love where i work and the people that I work with. My background is surgical nursing and supervisory roles. 

I would like to interject here that none of my background even remotely prepared me for this treatment course. I am as sincere as I can be that I became more prepared by coming here to this forum than all my investigating and talking to those in midst of my care.  I am convinced that this is such a rare cancer and the treatment even though is streamlined and protocols followed precisely ...... Can't touch the insight which comes from actually living it. 

I have some thoughts to help make the process better for the next group behind me. I have been talking to my rad/onc nurse and offering suggestions already.  She is very receptive.  But  I told her that I have a long way to go before I feel mature enough in my experience to form a plan.   

Without a doubt.....,, I will be hanging out here for a bit because I feel very comfortable and comforted!

i did go back and read what I could,on all of you guys to kind of get an idea who everyone is and what you journeys have been like.   All I can say is may God bless you all for all you are giving back.  you come here to give back because you care and I want you to know that you are wonderful!!!'

thanks for listening to my rambling.   Starting to get sleepy now!!!!  

cant miss tomorrow it is tx # 21 yah!

Missy xoxoxo

Me, too...

"I would like to interject here that none of my background even remotely prepared me for this treatment course."

Missy, I know exactly what you mean. I was an RN, too, for quite a few years. I had next to no contact with cancer patients, though. And even if I did, it would have been empathy from afar, not from experience.

You NEED to sleep. Cellular repair happens only while you are asleep, according to a huge Time magazine article I read a few years ago on current sleep research. Tell the oncologist that you can't sleep and need her med of choice prescribed.

Likewise, if you hurt, that's a HUGE stressor. Tell the doctor whenever you need a pain med adjustment. The cancer responded fairly quickly to treatment in my case. For most of the time, I needed pain med increases to deal with all the GI tract damage and skin burns.

If you even think you might become queasy, stay on top of that, too. Take the antiemetic med right away. Waiting to take it until you're kneeling in front of the toilet could mean that you can't keep the med down. If oral meds don't control your nausea, go to the infusion center or ER for IV meds (more effective than PO and you'll get fluid replace, too).

You are in survival mode!