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Speech Therapy session today:

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Had my evaluation from new speech thrapist and now know what happens when you are all 1st dx and referred to speech. DO IT, there is no guareentee that what happened to me @ 12yrs clean won't happen to anyone, but much less likely if you are ahead of it. I would have been, but the technology or connection from rad to swallowing wasn't an issue past treatment.
So I am standing at the foot of the tallest, steepest mountain in the universe and I must start climbing, and with all of you and God with me, I will make progress in the right direction I just know it. So guys and gals, when set backs hit you at any point never forget the fighting spirit that we were born with which is why we survive, if some of us survive shorter that's just because God wants us back.
So I am doing all the exercises you are with 12yrs of hardening and scar down with me, I will have another swallow study on 3/20 to see if progress from Deec. Ad if not baseline for new exercise program. I will be starting Vitalstem therapy and starting to have neck messages by occupational therapist to try to losen the muscles in my neck so they can work again. So just like all of you, allbe it different, I am battling too!

I am Irish and Scottish and American we were breed to FIGHT!

God Bless you Friends,

Rachel

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

You've been there and done that before.... Fighting is in your blood..., pull up the boots, tuck in the shirt, and kick butt...

I'm only American, so I guees I just Fight to Breed...., LOL...oh wait, too late, there's already two more pieces of me running around the planet.

Best,

John

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Skiffin,

LOL! Three of you in this world are enough huh? Lol... thanks for upbeat words, already started climbing, didn't get far yet, but I will!

Rachel

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Yes you will ! You are amazing and with your attitude you will make it to the top of that mountian !

 Peggy

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Peggy,

That was a very nice thing to say, thank you so much! I love how everyone supports each other here, I just hope I help someone someday!

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

and you do ! I don't post much because I am not as good with words and writing like most of the people on this board also don't have the knowledge that they have but I too hope I can help others on here one day . Just wish I would have found these wonderful people before I finished my Radiation treatments . I told the people at my Onc office about this site, hoping they will tell others about it .  :)

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi Rachel,

You echo what I was told by my friend that's been through this. He's now 18 month NED. As you've said and he has told me. You're going to learn exercises to keep your swallowing mechanisms in tact and to keep your jaw from tightening//closing. No matter what, DO THEM! It's like hydration. Skip them and you'll be in trouble down the line. Part of my team is a language/speech pathologist. I have a meeting with her the week of the 18th. I, as well as Marcia, will be learning massage and stretching techniques and other exercises that will help prevent some of the long term issues you've described. 

That being said, it seems you've been given quite a task! One that will require determination and diligence. Based on what you've shared about yourself, both are qualities you obviously possess in abundance. Considering what you've already been through, I have the feeling you're going to kick some tush! 

Positive vibes and prayers coming your way! 

"T"

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

T,

You my dear, like it or not, have been chosen! I choose for you to be my hero, I love to hear your outlook on your battle and I am in your ring along with everyone here pulling for you and Marsha to kick Jacks butt. I pray for your heath, your sense of humor, that you and marsha hold on to each other and lean on each other during this, and that one day, sooner than you can hope for you are back up there singing! I've seen not only how you respond to me, but how you respond to others on here, you are in the midst of your fight and you find all the time to lift others! God will take care of you my friend, you will just like me in eating, beat this!

God Bless you!

Duggie88's picture
Duggie88
Posts: 519
Joined: Feb 2010

 I was scared as hell when I lost my voice and even after it made its way back I lost the deep base voice I once had and quite frankly alot of self confidence in speaking in public. But I found the best thing to do is just talk on and now the wife keeps telling me to shut up and I do when I fall asleep. Positive thoughts your way and like Led Zepplin said Ramble on.

 

Enjoy the day

      Jeff

sabriene
Posts: 27
Joined: Aug 2006

Rachel, glad to hear so far so good with you.  When I read your e-mail today it made me go back and think what the ENT told me one day when I had a check up.  I was not in the best of mood for difficult to speak and eating a major problem for still had the peg tube. Since speaking was difficult wrote him a note.  He was preparing to scope my throat and laid down his equipement and said "Roger in this office we think positive and from this day on you do the same"  Since 06 I think of that  a lot and how true it is with all of us in this boat.  Your situation is somewhat like mind and it has been a yearly battle.  Seem like we put out one fire and at times two more pop up. I have read your previous e-mails and in my opinion you have the fight to hang in there with all of us on the battle field.  Howeve, sometimes when it seems things can't get worse they do and that is where the real fight in the person will surface.  An example for me being just when I thought things were doing some better to where I could enjoy living after 20 years of marriage back in 09 she ask for a divorce.  Mentally, that was very very hard to understand when I had beat the odds with cancer so far.  Financially, I had gotten all the expenses paid and being debt free was not an issue.  The rad. doctor mentioned to me that is kind of unsual for normally marriage problems surface at the start of it all.  The moral of all this the problems that stem from it all yes Rachel may be once again at the bottom of the mountain but she can gradually make it to the top.  May even be some set backs along the way but she will master all of them.Embarassed Roger 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Roger, that bought a tear to my eye. I know have battle much, but my rewards are huge. I have an angel that calls me Mom, I blessed with two young parents(mid and early 60's), a best friend in my sister and my baby brother, two newphews and a beautiful neice, not to mention a great and supportive brother and sister in law. I was divorced from my emotionally and physically abusive husband 2 1/2 years ago, and by fluke coming up on 2 yrs have been in the most loving and supportive, caring relationship with my boyfriend than I could ever wish for. When the eating thing can up, already with issues that I have since NED in 2000, hearing loss and speech, I thought my Christopher would run, and he said so you have a tube and things will be different, but your still the woman I fell in love with. Like I said, my battles, including this one| have been hard! But God has blessed me more than I could ever wish for. I wish that for all of you on here, fron the deepest part of my heart!

Rachel

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