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Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Having had the same surgeries, I know that the majority of posters here will never truly understand just how hard you have it. I know I thought I did the first time around, but it wasn't until after I was left with an unresponsive tongue made of wrist skin, a petrified neck and left arm weakness that I realized I had had no idea of just how bad this all feels.
For what it is worth, the taste did come back almost fully on one side of my tongue around a year after surgery. Not much comfort to me as I can't swallow so have to spit out the teeny tiny portion I taste then spend half hour trying to get it out of my mouth and off my teeth. But if you can eat, you will probably be able to enjoy taste again with what's left of your tongue.
Glad you are starting the anti-depressants and hope they work for you. Take a look at our coping with anger/fear forum and the thread: "don't you just hate it" for some comic relief. I'd be surprised if you don't recognize some of the complaints.
As for being a realist, I always agreed with Lily Tomlin
[quote]Reality is a crutch for people who can't cope with drugs.[/quote]and Jane Wagner [quote]Reality is the leading cause of stress amongst those in touch with it.[/quote]
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
I'm so sorry to read about the tongue/taste thing. Damn. I didn't have tongue surgery but my neck dissection left me with half my tongue numb and unable to taste. Tasting food with half the available taste buds is, as one would expect, about half as fulfilling. But in the 14 months since surgery I've just become accustomed to it. The fact that you will too is no consolation, I know, and I wish I could wave a magic wand for you!

Getting on an anti-depressant is going to make a world of difference, I guarantee it. Prozac saved my life during a couple of tough periods years before I had cancer. I have no doubt that the newer and more effective SSRIs, assuming that's what they give you and I think they will, will be even better.

I, and we all, are here for you. So fire away whenever you want!

D2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Joined: May 2009
Posts: 113
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: May 2009
Posts: 113
Beth,
Ok! I am your shining light! I havent posted on here for awhile....that is because I am out living the hell out of my life and working a ton! I am 31 and went down the same path you are going down right now with all the negativity and doubts. Ask just about everyone here I was as stubborn and pissed off at the world as anybody could be. I went to 3 different radiation specialists waiting to hear 1 of them say that I didnt have to go thru with this, then once I made peace with myself and knew what I had to do I went at it full steam ahead. You read all these nightmare stories on here but what we have that they do not is age and trust me that means a ton! All of my doctors told me I would need a feeding tube, they all told me that I wasnt going to be able to drive to treatment, told me that I was going to be out of work for at least 6 months, that my speach was going to be impaired and my life was going to drastically change. WELL, lets see......I didnt take the feeding tube (though there was a couple times that I wish I did when the tears would roll down my face while I slugged down a VHC) not to mention I drove myself to treatment every day and played golf into my 6th week of radiation which helped with my rehab from my neck dissection as well and I was back to work 6 weeks after my last day of radiation. I have put back on 20 lbs I eat what I want and other then some tightness, a small amount of neck/shoulder pain and some saliva issues my life is pretty damn back to normal. I honestly might be in the best physical shape in my life thanks to this BS. I am looking at all the advantages this has brought me instead of dwelling on the negatives and as far as asking about your chances of living....ha I told them I dont even want to hear that cause unless they go by the name of God they really honestly have no idea. Stay positive, hell get an attitude against this because being mentally prepared in my opinion is way more important then being physically prepared!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Well well, look who popped out of the woodwork!!!

Great to hear from you Jim and I'm glad things are looking so good for you.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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