ozymandible said:

Well, I turned the corner and

Well, I turned the corner and had to make a quick u-turn because the pain is back!

Had follow up with chemo doc who thinks it's a problem with my neck.

That fits my neck has arthritis in it.

The excruciating pain is all along the occipital nerves on the right side of my head.  

This can be caused by pinched nerve in the neck.

Daughter drove today I was extremely medicated.

Not allowed to take people in with me so no extra eyes and ears.

Chemo doc was mentioning thyroid cancer?  I'm hoping she misread her notes or there was an error in the chart.  I haven't had any scans since before chemo and rads so how would they know?

Anyway, not going to trip on this because I haven't been scanned since treatment stopped.  It could be a booboo in the chart. One day the chemo nurse tried to send me home with a pump! (That was not part of my therapy)

There are other things piling up that are not germane to the discussion.

My plate is so full.  I want to get away from the table for a while I'm stuffed already.

One more thing to deal with.
Sorry that you have so much pain and have to deal with this.
It could certainly could be your arthritis kicking up or a pinched nerve or both.
I don't know why in the world your chemo doc would be talking thyroid cancer.
Previous to the start of your treatment you had a pet scan and it would have been noted and dealt with then.
If she is suspecting thyroid cancer you need a CAT Scan with dye to see if anything is going on so why didn't she order one.
Then if anything is unusual a biopsy is done to verify or not for cancer or not and the type.
You know the routine.
It just seems odd that she would talk about it and not be concerned enough to schedule a scan.
Sometimes things are said by even professionals that just don't fit.
Also if you are fresh out of treatment your course of treatment would probably have gotten rid of all cancer in that area even if not directly treated or at least suppressed it.
So you have a lot going on right now but if you think there is any validity to this I would get a scan to be sure.
In the meantime deal with what you have to deal with one thing at a time.
I am sure you have other doctors involved in your treatment I would see another for an opinion and evaluation.
But I don't think I would ignore it but don't dwell on it.
If your pain is that bad there is a problem and I would continue to try to find out what it is.
You certainly have had a time of it like most of us.
Cancer and treatment is a rough road with even rougher sections and a few detours.
Stay strong, hang in there, you will get through this I know you will and get to where you feel good again.

Wishing you the best-Take care-God Bless-Russ

ozymandible said:

"Also if you are fresh out of

"Also if you are fresh out of treatment your course of treatment would probably have gotten rid of all cancer in that area even if not directly treated or at least suppressed it."

 

Yeah, that's exactly what I thought!  Maybe an error in the chart or she misread notes?  Beats me.  Eventually I'll see my ENT surgeon so I'll be getting another set of eyes on it.

 

She is scheduling a CT scan I just have to wait for the phone call.   I'm glad the PEG is still there.  I'm still doing soup, smoothies and oatmeal but chewing hurts now and so does exercise for jaw and neck but I'm still doing them.

 

Remember that kids game Chutes and Ladders?  I got pretty far and then fell down the chute!  

 

She called in more gabapentin because she's increasing the dose and she wrote more norco for me.  I have to send one of my kids to the pharmacy I'm too rekt.

 

Thank you for your response.  Getting a little stressed and discouraged but I probably worry too much and borrow trouble.

 

 

Where you're at.
I have had difficult treatments, recoveries, and setbacks.
I was so weak at one period in my last episode that the nurses had the alarm set on my hospital bed and I had to use a walker and they had to be with me.
Not 100% my choice, in fact not my choice at all but they were protecting me and caring for me.
I knew they were right I was in bad shape.
This continued also at the rehab hospital I went to next for 10 days.
But I have had many victories too.
I got back home and recovered pretty good considering.
So I know what you mean when you say you are Rekt this whole thing beats you up mentally and physically and you feel drained.
We don't know what's ahead but trust in God, Trust in the Lord and he will get you through.
The hard part for us is the unknown.
It's nice to be in control and have a schedule and know what's coming up but cancer takes that away from us.
It seems like the evil little thing dominating too much of our life till we get rid of the evil little rascal.
I realize I can't do much for you or other folks on here but we support each other as best as we can.
We have good medical treatment and support and support from family and friends and places like this.
But the battle itself is all ours alone and it's not easy.
I was in the black tunnel but finally got to the end and into the light again and you will too.
Pullin for ya and all the folks on here struggling and letting you all know the victory will be yours.

Check out this song

"He Sees What We Don't"  You only see your valleys but he sees the mountain you'll be standing on  https://www.youtube.com/watch?v=bzYcn85XjUY

Prayers your way and for all the folks here on the CSN H&N forum Wishing You The Best-Take Care-God Bless-Russ

ozymandible said:

I finally got hold of the

I finally got hold of the lymphedema clinic.  They don't have any openings until December!

There is another place that I went to for PT that is closer to my house.  I might call them and see if they have lymph people and if they can get me in sooner.  If so, I'll try and get another referral.

Still doing jaw/neck exercises and lymph massage.  Some days it doesn't feel like it does anything though.  Sometimes my neck is way worse than other times. I wonder if I sleep wrong, or if it was something I ate or what too much liquid?

My boy is going to the store for me and maybe he'll take my daughter out of the house for a while she needs a break.

Hanging in there.

My oh my till then your lymphedema will probably resolve itself.
And since you are doing exercises and lymph massage maybe sooner.
Sometimes I am not sure what it is but I have an idea that it makes our bodies and body parts susceptible
to odd happening and problems.
Sometimes you have a day where you just don't feel right all day and weird and lousy.
After all, we just had radiation equivalent to being near a small nuclear bomb detonation.
And had chemicals pumped into us that I wouldn't even wish on a dog.
I think your body just has a lot to settle out and rid itself of and just get readjusted and get back to almost a true normal.
It takes time.
I am glad you got a couple of good kids helpin ya.
Did the daughter need a break from the cancer idea or a break from mom for a bit?
Heh, Heh.
Take Care-God Bless-Russ

Just trying to kid around a little we all need a break now and then. Take care God-bless 

ozymandible said:

Well we're cooped up in our

Well we're cooped up in our house so I'm sure she needs a change of scenery as well as a break from me.  It doesn't hurt my feelings one bit.

I agree, by December the lymph thing might be resolved or at least halfway manageable.

 

Hi! I had lymphademia also. Had an expert massage for 30 visits. I was introduced to this massage machine. Insurance will pay and the balance can be paid in installment. Also have a head compact to wear at night, don’t know proper term for it..

Flexitouch Plus works by sequentially inflating and deflating its chambers to create a gentle, wave-like motion that directs lymph fluid from the impaired area toward healthy regions of the body. The fluid is then naturally absorbed and processed by the body.

https://tactilemedical.com/our-lymphedema-solutions/for-the-lower-body/flexitouch-plus/