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#188375 02-22-2015 06:41 PM
Joined: Jul 2014
Posts: 25
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jul 2014
Posts: 25
Hello All! As the title says, just thought I'd check in and possibly help anyone else at this point in the journey. Hubby is 6 months out of tx and life is moving forward. Still not much saliva and not a lot of taste. He is starting to pretty much be able to eat anything but doesn't really taste it. He will get maybe one good taste of sweets but then things blank out on the next bite or two. We've noticed that the drier the food. the less he can taste it. I'm sure there is some "no moisture= no flavor" theory going on here. His blood work is slowly getting better. His potassium is still low and so he remains on those humongous pills. But, that's a small price to pay. His lymphedema down the center of his neck is still pretty bad but his swallowing is pretty decent. He had a bit of the electric shock feeling when he turned his head a certain way, but that seems to be fading, as well. He is back to work full time and life is good.

When we go out to eat, I sometimes still can't believe that we are actually enjoying a meal out! During tx, I wondered if we would ever enjoy a meal in a restaurant, again. We are both so grateful for these simple triumphs. I know life can turn on a dime and am definitely not free of worry, but I feel so blessed and really take each day as a true gift.

I just want to encourage anyone who is on this same journey and maybe not as far along as we are or maybe are not doing as well. Please hang tight. Things can change (for the better, even!) This is such a slow process, as many of the "long" timers on here have told me. Sure, impatience can set in. We're human, after all. But, keep the faith and stay strong. Come here for encouragement and with any questions or just to share with all of us. This place has been a life line for me.

Thank all of you for your help and encouragement as Hubby and I tackle this. I can't begin to tell you how much this forum has helped. Hope you are all doing well.

Carol


Carol
Husband diagnosed SCC BoT 4a-June 4, 2014
Mets bilateral lymph nodes
HPV positive
Tx started June 23, 2014
Blood clot in cephalic vein of right arm after first chemo
2x Cisplatin (hopefully getting in 3rd)
35 IMRT (hopefully complete on Aug. 12)
third Cisplatin cancelled
Last day of treatment Aug. 12, 2014
PET scan Nov. 10-NED (some PT inflammation)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Carol, what a nice encouraging post.

So happy to see your hubby is doing so well with his recovery. Being a caregiver is a tough job and you were great.

Being 6 months post rads he still has a long way to go before his sense of taste is finished recovering. A total recovery takes a full 2 years. The most gradual improvements happen with the sense of taste and saliva. Its fairly common for patients to taste the first bite or 2 then the food loses its flavor. In time, your hubby will begin to notice he is able to enjoy the taste of food better.

Keep up the great work smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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