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Right Tonsil Stage II, 1 lymph, 9 teeth gone IMRT 35, 3 Cisplatin

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

HI all, I just wanted to say hello, coming up to my 3 year anniversary and thought it would give some hope. I too was obsessed in the early stages with info and looking for someone to tell me how long I had to live, but, now 3 years on, here is a short description which most of you will relate to.

45 year old female (smoker at the time, not since though, still enjoy a beer or two or three) Dx, tonsils out, 9 teeth out, 35 rads IMRT and 3 x cisplatin, lots 25 kilos (approx 55 lbs) no peg, no taste, very small amount of gluggy saliva, tinnitus and partial deafness, mixed alternative therapy with conventional therapy, got my body well before treatment. So by the end of it all I felt deflated, depressed and no hope. A few mouth sores, quite tired. I worked all the way through with the ability to have a few lay downs during the day (as I own my own business)

3 years later, taste 95% back, just can't taste cold chocolate, saliva 95% back, energy better than ever, sadly, weight gone back on haha. Many many reason to live, you know we are going to say goodbye one day, just not yet. Good luck to all of you and always live in hope, this is one of the better ones to get, sad but true. Love light and many years of happiness to you all, side effects can be a state of mind, I just pretend it's always been like this xxxxxxxxxxxxxxx Jen

luvofmylif
Posts: 344
Joined: Sep 2012

Wow, that is so good to read. Your story is inspirational and I thank you for that. I am so happy you are living well after your long difficult road.

God bless you and thanks for giving the gift of courage and inspiration to us.

Joan

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Hi Jen,
So nice to hear you are doing well and carrying on with your life
it is posts like this that makes it all worthwhile.
I too was dx with stage II Tonsil cancer but I only had 33 rad treatments
no chemo or surgery. Its been 8 months now and I'm pretty much
back to normal (drinking with the guys, not as much as before) , fishing...
not catching like Skiffin, Cruising with family. My only problems are my
taste and saliva are not back yet, but there getting a little better ( I'm
willing to wait ) and the submandibular gland under my jaw ( right side ) swells when
I eat because it is not releasing saliva, other than that LIFE IS GOOD.
Keep your faith in God and always be positive it goes along way.

God bless
Tonsil dad,

Dan.

ditto1
Posts: 634
Joined: Mar 2012

We all need to hear the Light at the end of the Tunnel stories. Keep it up and enjoy you life.

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

Awesome news, and congrats on staying tobacco free..., your body will love you for it.

Best Always,
John

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

Thank you so much for sharing your story with us. It is so inspiring to hear from people such as yourself to encourage the rest of us on this journey.

God Bless you,

~ C

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

I'm only 3 months out of treatment, and knowing that things DO get more normal, that I will someday probably spit again...that the taste of food will someday last longer than 3 or 4 bites...all that you said lifts me up...not that I'm down at all (still basking in treatments being over, and a NED scan)...BUT, I love knowing there is much to look forward to.

p

CivilMatt's picture
CivilMatt
Posts: 3061
Joined: May 2012

Pascotty,

Timely and terrific post, easy to identify with!

Can you taste warm chocolate (just have to ask, curious mind and all)?

I hope in 3-years I am in as good a shape mentally and physically as you are in.

Best,

Matt

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

In answer to your question Matt. YES I can takes warm chocolate. I dunk it in my coffee and suck on it. Normal chocolate takes too long to suck and by the time it's started to melt I lose the taste. Oh and another thing I do is chew gum all day. It keeps my saliva going and makes me swallow a lot which is good. It's sugar free of course. Just in case my doc is reading haha. Lifeis good. Early days cancer thoughts would consume my thoughts almost the entire day. Now I'm lucky to give it a fleeting thought once a week. It true how time heals the mind and the body. Love and caring thoughts to you all xxxxx

wrhbounds's picture
wrhbounds
Posts: 39
Joined: Jan 2013

Got to read the whole thread next time

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