Went to SLP last week and

ozymandible

not really feeling much better.  The pain gets worse everyday, and I had to bust out my mortar and pestle again because I am losing my ability to swallow my meds.  I'm wondering if this lymphedema spot in my neck has become infected because it hurts like the devil sometimes but I never have a temperature.  Maybe I just can't get the hang of manual drainage massage.  Nothing seems to shift it only seems to get worse.  Feel so lousy I just take my pain meds and try to sleep a little.

I was doing so good a couple months ago.  Oh well, my surgeon might call today maybe he will have some answers.

Thank you for reading.  Extremely discouraged today.

wbcgaruss

Love The

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

ozymandible

He did refer me to a pain

He did refer me to a pain management specialist so at least there's that.  No, he said he was going to call sometime today about the PET/CT scans.  He is my second opinion.  He was saying all the hot spots might be nothing-didn't seem all that worried so maybe it's all good.

Just being a big baby today.  PO'd because I have to grind up my meds again.  Mad at the world and not fit to be around.  Blecch.

The cat is me choking and coughing every time I try to take meds. 

motorcycleguy

ozy,

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

I hope you feel better, soon,

MG

ozymandible

Thanks MG.

Thanks MG.

tbret

Stop washing

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.

ozymandible

Thank you.

Thank you.

tbret

Any Progress?!?

Sometimes just change is progress.

I really hope you are having a better day.

ozymandible

Maybe a change in my attitude

Maybe a change in my attitude?  Some kind of radical acceptance of the state I'm in maybe.  The pain is really knocking all the starch out of me.  It's about all I can do to just sit here quietly and make sure I am fed and hydrated-relying on the kindness of my offspring.  I'm not feeling sorry for myself-I just have absolutely no strength.  I guess it might just be like this for a while.  My mouth is very swollen so I am back to the tube full time.  I just don't have the energy to struggle with trying to eat right now.

I can still swallow one or two pills at a time without choking.  I cut back on vitamins only doing RX and pain meds.

Maybe I should see if they'll bump that pain management specialist up.

Haven't heard a peep about the biopsies I need.  I'm hurting so bad that I don't really care about it too much.

Thank you for asking.  Wish I had better news. 

wbcgaruss

ozy I Think

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

 

 

ozymandible

Thank you Russ.  Sometimes I

Thank you Russ.  Sometimes I feel like they've let me sink or swim.  Have some FU next week and will make phone calls.  Might use a mouthpiece again.  Wears me out to speak.

wbcgaruss

ozy This Is Not

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

 

ozymandible

FU is just follow up and the

FU is just follow up and the mouthpiece would be the seeing eye kid speaking for me.  . Might be a good idea to insist she come along since I'm so heavily medicated.  I could be missing critical pieces of information.

wbcgaruss

I Guess

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

ozymandible

Yeah, I'm unsettled too. 

Yeah, I'm unsettled too.  Maybe at FU this week they'll start sorting things out.  If I call tomorrow triage will take a couple days anyway.  I can't make them do anything.  Maybe the chemo doc will schedule a biopsy for me.  If I recall correctly it will not be a bronchoscopy so what does that leave?

CT guided? I thought the Chemo doc and ENT surgeon were supposed to hook up about this but maybe it's just hard to coordinate things with staffing shortages and all.  All I can do is one day at a time.

I sure hope 2022 turns out better than 2021 did.  Thank goodness 2021 is almost over.

BeagleDad

Sure does seem odd

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