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1 week out

ditto1
Posts: 630
Joined: Mar 2012

Still doing ok, neck burn coming along, got good responses on my Im on Fire Blog. Hopefully another week or two and it may be in my rearview mirror. Eating ok can swallow, I was a No Pegger so all goes via the mouth. Not to bad but for now it feels like a little wad of something just sitting at the base of the thoart, Boost type products seem to go down ok, I just have to remind myself to do it, get the calories and proteins etc. staying alive, staying alive, anyone who did not just see John Travolta is fibing. I guess to go to a question from a testimonial it is this. I know everthing is based on time, foot forward / backward/ we are all different and Im living that reality based on my readings of peoples blogs. Voice, my voice just sucks, I know we always sound different to ourselves than to others but usually just a few words before I choose just not to speak. Little did I think texting would be my way of communicating. Thanks to all the Techs of the world and my kids for teaching me how. So this cooking thing I read about for months and now am experiencing would that affect the voice, funny I made my living on the telephone before retireing, now the 1st thing I do is apologize to who answers the phone and immediately advise them of whay I am speaking as I am and quickly finish the call. So any FYI on voice returning would be appreciated. I had no surgery, Base of Tongue, 2 nodes. 33 Rads, finished 10 days ago, 2 Cisplatin, 9 Erbitux. I will check now to see if Saturday Night Fever is on tv tonight.

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

D1,

Now that I am 8 months past any treatment ,somedyas my voice is normal, by that I mean not hoarse or ruff, but it's not the same voice I had pre-C, on days where I have talked a lot for work, it gets worse, really rough sounding ..even my boxer boyz look twice at me. I asked my ENT and he said all looks great, that the vocal cords were affected by the rads and there will be good and bad sounding days..so maybe I'm at my new normal voice stage. I've found a new fondess for texting as well..save me a lot of time for different things.

Linda

ditto1
Posts: 630
Joined: Mar 2012

now that I am retired using my voice is not a mandate but it would be a step back to the old me. So I figured what is so special about this site and all you folks is we can get quick responses from folks that are living it or have lived it, but will generally offer some insite. Again thanks for your reply. If im not bloging with you folks Im sleeping, do not know why RADS work that way. But John Skiffin may have said it best in a recent blog that it was about 3 weeks into RADS before things starting going south, so its likely the same 3-4 weeks after RADS before we can start going North again. Thanks and have a great day Linda.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Yep, I think you have it pretty much figured out... Now if your body will cooperate, you should strt noticing a little improvement 3-4 weeks post Tx.

Unfortunately not nearly as fast as you'd like...but improve you will.

Two steps forward, one back....eventually you'll have more good days than bad.

As for the voice, the first year or so my voice would get hoarse from time to time.

Congrats and hoping the recovery goes smooth and as fast as can be.

Best,
John

phrannie51's picture
phrannie51
Posts: 3618
Joined: Mar 2012

but that may be because my cancer was behind my nose, rather than deeper in my throat and closer to my vocal cords.

I think you've done remarkable with the food angle of all this. I would have been up a creek without my tube after rads were over, so know you must have to use a lot of will power to get the calories down. It is hard to "remember" to feed thyself, when your mouth hurts, food tastes like nothing or worse, and you are so exhausted. I think it takes longer to get over the fatigue than just a couple of weeks. I have days still, where I can sleep 1/2 of every hour in the day as it passes by....and get to bed and fall right to sleep again. I never was a napper, so this isn't an escape...it's a real need for sleep....I know you're feeling that big time with only 10 days of being finished under your belt.

You're going to start feeling better here soon, tho....get another 10 days out, and I think you'll be pleasantly surprised, that at least the mind numbing fatigue will begin to lift.

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm not the best one to ask about voice. I've been dealing with voice issues for 5 years now. This is how my cancer was found. I had this crazy raspy voice that just never seemed to get better. After seeing both MD and ENT, I was sent to a H&N surgeon. After a biopsy on my vocal cords it was discovered that I had carcinoma in-situ. Not enough to treat with chemo or rads but enough to excise and do speech therapy and watch me monthly. Needless to say I had a total of 10 biopsies because over the years I kept getting new growths which all came back as in-situ. After my 9th my voice actually for some time started to get better and for a whole year nothing showed up on my monthly scans. Last november my voice started getting worse again. With each strobe we found nothing so my surgeon decided to move my CT scan up from august (this month) to this last March. Well low and behold it showed a tumor deep under my vocal cords which couldn't be seen with the strobe. So back in surgery I went. He could only remove a portion of it and then scheduled me for chemo and rads. After surgery my voice was barely a whisper....again darn it! He told me that he expected after I healed from treatment my voice would start getting even better than before because the tumor would be gone. I would however have to heal from rads and of course the surgery itself, I am now 8weeks post rads and I can say that my voice is getting better slowly. People are starting to mention when they see me that I have more volume. It honestly all depends on exactly where your cancer was and if you had surgery and rads or just one or the other. My voice was really bad but now I'm getting better so I hope that gives you some help and hope. Good luck to you.
Billie

hwt's picture
hwt
Posts: 1832
Joined: Jun 2012

I'm more than 12 weeks post. I recall saying one day that I heard my old voice for the first time. It has been quite awhile but I don't recall the week. Sometimes I wish I had kept a diary but other days I can't wait to forget. Hope you hear "the old you" soon.

CivilMatt's picture
CivilMatt
Posts: 2825
Joined: May 2012

Ditto 1,

At 21 weeks post my voice he hit or miss. I never know what is going to come out for sure until I speak. The only symptoms I have are dry mouth and lack of spit. I take a water bottle everywhere with me. My voice does seem to be getting better, I can purposely talk on the phone and not sound (completely) like Frog Matt, other times I do. Keep the faith, it should get better, John Travolta or not.

Best,

Matt

tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

I am 4½ months out and am still hoarse. My singing career is over before it started! It is frustrating because I do feel alright but still sound sick.

Such is life with Rads.

Tom

ditto1
Posts: 630
Joined: Mar 2012

maybe I could be clearer on my voice, I can speak but within moments my mouth feels with mucus, If I do not talk my mouth and thoart just get dry. This mucus thing how soon will it stop post treatment. I mean its like turning a spiket on and off. Lots of kleenexs when spiket on. But I think until the mucus stops theres not much hope. If anyone see's this followup would appreciate your thoughts.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Oh yes I remember the mucus thing very well. For me it seemed to last about 3 or 4 weeks. I remember the tissues and spitting it out, yuck. For me drinking coke helped to cut some of that. It also helped because water was too thin and I'd choke on it and then more mucus would magically appear.
This too shall pass tho and maybe yours won't last long at all. Try some soda or soda water and see if it helps. I'm sure others will hop on here soon and give you some more advice.
Keep us posted.
Billie

ditto1
Posts: 630
Joined: Mar 2012

Billie, I hope so, but talking maybe overrated, at least from me, but looking forward to the mucus to go away or reduce. Looking forward to saliva, wow never knew how important it was.

tuffenuff's picture
tuffenuff
Posts: 273
Joined: May 2012

i finished up with my treatment the first week of august. today was the first time i laughed like my old self (so hard i cried) without worrying about mucus or hurting my throat. it was really nice.

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