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luvofmylif
Posts: 344
Joined: Sep 2012

Hello everyone. I haven't posted for awhile but still think of everyone on this site. I think I just needed a break from thinking about cancer. Selfish I know, but it seems since my husband was diagnosed with cancer my emotions have been all over the place. But, I am glad to be back on the site and hope all of you new and old subscribers are doing well. I received just support from all of you and am always grateful for that and it feels good to be reading posts again . I think about you all everyday.

John is about 3 months out from radiation and chemo and 6 months out from surgery. All in all  doing well. He returned back to work about a month ago but it still so exhausted at the end of the day. We had first PET scan last week. It showed a small spot on the left base of tongue near the eppiglottis. Of course I am worried about it but they said we will watch it as it may be reactive in nature. Also, this is really weird, an area on his gluteal area lit up. They weren't sure what to make of it but decided that it was nothing to worry about, so for now I am not going to get too upset about the results. That's the only way I can live now. He is today saying he noticed that the ability to open his mouth wide has diminished. Curious is this normal after radiation and what others have experienced. Should we let the drs know via phone call or just wait till next appt in a couple of weeks?

Anyway, sorry I have been away. I keep all of you in my heart. Hope you all are doing well and enjoying life. I am glad to be back on the site. I sort of feel like the prodigal son, so to speak,(except I am a girl and old) and hope you all will forgive my abscence. Missed all of you.

Joan

 

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Hi Joan, overall doesn't sound like a terrible first report... Yes a few things to stay up on, but sounds like the MD's are gonna keep an eye on things for you guys.

As for the deminished ability of opening the mouth..., not uncommon.

Actually there was just a thread concerning it, and I linked to a site that demonstrated some exercises to help with that I believe..stretching of sorts.

Trismus

Glad to see you back on...

Best,
John

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Good to hear from you. And glad your news  is generally positive. Need all the good news we can get on this board. Rick.

hawk711's picture
hawk711
Posts: 527
Joined: Jan 2010

My mouth got smaller after treatment too.......they say you should be able to put 3 fingers stacked up in your mouth, and I can do only 2, so I lost maybe 33% of my "open wide" ability. 

Not a big deal, I just don't order those big sausages at the ballpark anymore!

Glad to hear the news is good for you both...

Steve

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

Two fingers it is for me, too.   Trismus. This is definitely something I had given NO thought to at all.

Deb (recalling a girlfriend in High School who could cram her fist into her own mouth...)

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

While reading Steve's "three fingers" comment - - -is there ANYONE who did not open as wide as they could to see how many fingers they could cram in??  I'm in at almost three.

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

Joan,

 

John sounds like he is doing normal at this stage of the game.  I’ve decided from the neck up I will never feel exactly like I did before.

 

My throat feels smaller and stiffer.

My teeth don’t clinch together like before.

I use to sneeze 2-times in a row, now it is like 6-10 times in a row

Then of course, dry mouth, taste and spit.

 

I can yawn, real big, mouth side open and no complications.

 

Stay on top of things and keep getting better.

 

Matt

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

that the PET scan proves he is a PITASmile  The mouth thing can become a problem.  I had no trouble the first time I was radiated, but this second time has resulted in a severe narrowing, called trismus.  What you notice is not an emergency, but certainly needs discussed.  He will need to be on exercises for this.  When it gets to the fibrosis stage of healling, it becomes a permanent problem.  This results generally from damage to the chewing muscles from radiation.

 

Pat

phrannie51's picture
phrannie51
Posts: 3822
Joined: Mar 2012

he needs exercises for opening his jaw, to start loosening them up, and to prevent them from getting fibrotic....until you can talk to the ENT about it, sticking two fingers into his mouth, and gently trying to spread his fingers, putting pressure on those muscles is a start.  I could just barely get two fingers in, somewhere right after rads, and just kept working on the muscles....today I can do 3 fingers plus a little more.  He might as well do the neck ones, too since he's at it...turning the head all the way one way and hold....then the other way and hold....then tilting his head both ways (like he's touching his shoulder with his head)....just to make sure his neck stays limber.

Overall,  John sounds like he's right on course.  Working was SO tiring when I went back....and for a while there I wondered if I'd ever get my energy back....it took from October to January....but it started coming back, and keeps getting better at the usual rate.....by degrees every week....

You, my dear have changed...do you realise that?  I think you may get the award for 1st place in "one day at a time"....it wasn't that long ago that you would have been unable to say.... "I am not going to get too upset about the results. That's the only way I can live now."  I'm so proud of you!

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Ummmmm, LOL... I put a link to the exercises in my post above.....

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

Good to hear from you again.

Deb

katenorwood
Posts: 1853
Joined: May 2012

Hi Joan !

John sounds like he's doing pretty darn good.  With the tests (scans) no worries.  I agree w/P you sound real good too Joan.  Going to keep sending those positives for both of you !  Hugs !   Katie

luvofmylif
Posts: 344
Joined: Sep 2012

Thanks all for the support and information. I think I will have John call the ENT surgeon today to let him know about his jaw. I loved the comment about PITA...never thought about it that way LOL.

And, yes, Phannie I am trying to take it one day at a time. As you veterans know it's the best way to get through this.

I will check out the superthread about trismus and try to help John with exercises.

You all are the most inspirational and amazing people . As always, you remind me we are not alone in this battle.

Joan

cureitall66's picture
cureitall66
Posts: 874
Joined: Aug 2012

First, great news to hear. If those issues you point out were of great significance, I'm sure they would have acted quickly on it.

Second, I've never had radiation and I can't even GET 3 FINGERS TO HOLD MY MOUTH OPEN!! So, those of you that are having that issue, I wouldn't fret. I have no problem getting food in my mouth....LOL

Glad to see you on here Joan. As caregivers, it's very difficult to stand back and watch our loved ones go through this and feel so helpless. No one but our own warriors/caregivers here know what we go through and experience. It is very hard on us emotionally too...but, be strong the best you can and know there will be brighter days....they may not be the same as you once had, but they will be better than what you just went through with him. Keep a smile on your face and stay with us. BTW...you can pm me anytime you need to talk.

~Cris 

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Glad to see you on here Joan.  I haven't been on in a while and it was nice to see a post from a friend.

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