Went to SLP last week and

New pic I always liked that cartoon.
You are right you were doing so well a couple of months ago.
In fact, all through your treatments you were cooking and doing this, and that I was impressed.
ozy I feel for ya this kinda setback situation you have been working with for a while can get you down.
Not big stuff but this constant pain and sometimes pretty bad.
One of your docs or cancer team has to address this and find an answer.
This shouldn't be.
When your surgeon calls explain the whole thing to him and the duration of time it has been going on and
if he doesn't have a solution get him to refer you to someone and stay on this and get it resolved.
Constant pain can really drag you down but do the best you can and know there is an answer out there you just need to get to the right person.
Still praying for you-Take care-God Bless-Russ

I'm sorry you're having a tough time; it can definitely make a person cranky!

I hope you feel better, soon,

MG

That's the furst thing that would help! (see what I did there?)

There I was, like February after the radiation stopped in November.   I'm just beginning to think there may be light at the end of the scanner tunnel when I had this big wattle under my neck show-up that hurt (although not bad) and I couldn't fold sheets or put pillows in pillow cases ---  and my sister is texting me asking what's new and I send her a "selfie" and she called me immediately and said with an urgent, pleading voice, "Oh My God!  Can you have it surgically removed?!"

You can always count on family, can't you?

So I complain and FINALLY someone sends me to an "edema nurse" who mostly works with women and she has to do the massage a couple of times and show me how and I do it and it's uncomfortable and I can feel the pressure in my throat when I'm doing it and I'm thinking, "Oh, so cancer wasn't enough.  Now there's THIS!"

It went away almost as fast as it appeared and I got my wife interested in helping me with it and... well... it's over.

I will hope for the same for you, Bill.

Chin-up.

Sometimes just change is progress.

I really hope you are having a better day.

Uhhhhh maybe I shouldn't it's dangerous for me to think.
Maybe just throw in my 2 cents.
It almost seems as if you are heading backward a bit.
I still think at this point you should be doing well not dealing with unbearable pain.
Again just my 2 cents here but is there a doc on your team you feel confidant in calling and explaining the situation.
I would be bugging someone and letting them know how bad the pain is and asking for someone to look at you.
Usually, your ENT is your frontline go-to guy.
I feel for ya ozy.
It just seems like something is amiss here.
By the way how long is it since you finished treatments?
From treatment finish, you should have a couple of bad or worse weeks but from that point on you should be in a slow but steady improvement.
See your ENT may be nothing out of the ordinary is wrong and they can tell you why you are having this bad period.
But at least you would have an explanation for it and not be in the unknown.
Wishing You The Best-Prayers continue for this to resolve-Take Care-God Bless-Russ

A sink or swim event in your life or a little test this is a serious cancer event and many times a one-shot deal to get it right.
Don't look at it as a sink or swim and don't let anyone treat it as such do what you have to do to get your problems and situation addressed.
Your team should be doing what they can to get you through to being recovered and handle any bumps in between.
I am not making a judgment but if you think things are not as they should be you have to reach out and remind and
bug people and sometimes you might think you are being a pain but so be it, things need attention and don't feel bad about it.
This is a one-time major thing do what you have to to get through it.
Good luck with your FU next week and I assume you mean FLUOROURACIL, 5-FU not something else.
And yes if you are worn out use your mouthpiece and I assume, here I am assuming again and you know what that means?
I assume you mean your kids and probably the seeing eye kid. (Funny name for a kid BUT!)
SO-Wishing You The Best-Take Care-God Bless-Russ

You can tell I'm a little unsettled about your situation.
I hope it's just me and all is well and just needs more time.

Take Care-God Bless-Russ

Yeah man, something seems off.  I wish I had advice for you, but Russ has it covered.  I have not read about anyone experiencing such severe lymphodema like yours.  Well, I should clarify ... a painful lymphodema experience.  In my case it was just "not pretty" and I wanted it to go away.  The therapist showed us the manual technique and gave me a stretchy bandage to put on my head at night and over the course of several weeks it went down a lot...and we do that massage every day to try to create a new route for the junk to travel ..but even when massaged and manipulated there was no pain.....so I just have no experience to assist you except agree that this should be reviewed by a doctor coz it just ain't right.

So really I am posting just to express my concern and hopes that you will soon be writing from a more cheeerful perspective.  

One of the other benefits of this site here is it is a safe place to go when feeling down and just needing a place to vent the frustrations and emotions that are part in parcel to what we all have experienced.  Family and those close to us in our personal lives cannot fully understand and grow tired of our "complaining", not to mention a feeling of helplessness toward our situation.  

It is my NON medical opinion that your lympatic fluid has become "dammed" or trapped and the swelling is putting pressure on nerves and other areas.  I hope this is all it is and that the fluids can be encouraged to find paths elsewhere in your body.

Don