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I know I am getting annoying

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hey Everyone,

I really need to know if anyone out there lost their swallow after treatment only to do excersises and regain control.  I know it can and does happen during treatment and you fight to maintain and regain.  I am climbing my mountain and you have all (as they said long ago on SNL) PUMP ME UP!  i was just wondering if there was someone who had been NED for a while and stopped swallowing and did these exercises and it worked.  I am not gonna give up even if noone has, but you all know, a little extra positive can't hurt.

Going to follow up with primary tomorrow since last visit.  Last time he heard wheezing and put me on antibiotics.  Hopefully no wheezing this time, I always have a gurgle high up more in back of throat due to thick salvia and phelm I can't swallow(get stock in tissues, i will be making you all money with what I am going through lol), also have to get script for follow up ct of lungs to see if the spots they saw during pnuemonia was the pnuemonia like they thought.  So leave me in those pockets folks!

Hope everyone is hanging tough, I pray everyday for you all!

God Bless,

Rachel

CivilMatt's picture
CivilMatt
Posts: 3069
Joined: May 2012

Rachel,

 

While I don’t have any major issues with swallowing (knock on wood) I can sure give you support in your endeavor to fight these side-effects.   Bless the H&N forum for drilling into my head to swallow, swallow, swallow.  It is funny, something we take as so basic can be so hard.

 

Good luck,

 

Matt

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hey Matt, thanks. Also I am starting Lymphodema therapy on Wed. I guess for the hardedning in my neck after all these years, ever have that and if so what does it entail?

Tahnks again,
Rachel

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

rachel, i am also going thru lymphodema thearpy because i had some nodes removed.  for me all it means is masaging the area.  i hope that's all it means for u also.

God bless,

debbiejeanne

CivilMatt's picture
CivilMatt
Posts: 3069
Joined: May 2012

Rachel,

 

I did have a round of neck massages (too few).  It was very pleasant and helped.  Now I have to do my own massages (too few).  I never knew there would be so much maintenance involved in cancer recovery and who ordered the occasional constipation where the heck did that come from.

 

I digress a bit.

 

Matt

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Matt,
You make me laugh! Unforunately I will not venture down that little path you mentioned!
Glad to hear that they are enjoyable! The messages I mean! Lol

Rachel

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

I'm too new to recovery to be of any help on your question....you had NPC, and I did also.......and I'm hoping I can say "I've been out of treatment for 12 years" out there in the future (just like you).......I'll be following your trudge up this mountain....Nothing comes easy with this disease, but I just know you'll do it.

p

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Phrannie, when I was in your shoes, my hemo told me about a woman she treated in her 12th yr and she went on to have a family. I remember thinking the same thing you are right now, if I could just be there now. Sometimes, even in that new sense of awareness, you wish time away just to get further and further to that 5 yr mark and then past that you miss life that was happening around you(or me in this case), so DON'T rush it, enjoy what God has given us.

I find it funny that they all told me how rare this cancer was, almost no recorded treatment plans, it doesn't seem so rare to me on here!

If I teach you anything, its that technology has developed great things that will probably save you from things I am going through, keep up on your hearing I didn't lose mine till 2010, I was told that even if I do or don't get my swalloe back that I have to continue to aggressively do these exercises, so Phrannie, DO THEM! Even now, don't be here in 12yrs. Maybe if I didn't hide my head in the I would have found out about this before it started, trust me I was a coward for many years and ashamed that I didn't trust the Lord and face my fears sooner especially when He had already given me so much. That is what 12 years taught me!

God Bless you sweet Phrannie, stay HEALTHY!

Rachel

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

I truly do not "wish my life away" (well, I might be a teensy bit guilty of it when we're transitioning from winter to spring in Montana....but that's just wishing a couple of months of it away...Embarassed).....the only way I'd wish it away these days is if I didn't have to get older along with the wishin'....and that's a no-can-do....LOL.

p

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I'll be no help - just REALLY wishing someone would chime in soon, saying "There is hope, I'm proof". 

Have you had the same amount of saliva and phlegm since treatment, or has it gotten worse?  I know we've seen at least one person make an amazing comeback on the eating front, but I really think his issue was trismus. 

Glad you still have the right attitude, either way.

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