"This sucks."

Hi Marc,

It does suck. I have experienced the same "suckness," and, to some extent,
still do.

I just wanted to say hello, and tell you how much I've enjoyed (yes, even at
a time like this) reading your posts to the group. I sense you have a very
strong life-affirming attitude in this, as well as sense of humor, and
talent as a writer. The support from your community you describe is very
touching.

I'd say "welcome to the fellowship of the tasteless" except that sounds like
the epitome of tastelessness itself !  Hopefully you will leave the
fellowship of the tasteless asap. And congratulations on being able to keep
your teeth !

In my case (tongue cancer), my taste didn't just "take a holiday," it got
perverted by diabolical forces so that everything, even distilled water,
tasted like it was oily and salty. This persisted for about two months after
final radiation, and I believe was more related to the chemo than the
radiation. Hope you do not experience this ! And since it sounds like the
radiation you are receiving is much less in the oral cavity arena, it seems
reasonable to hope you will not experience major loss of taste. Has your
doctor, or medical team, given you any prognosis about side-effects in the
area of taste ?  I got none, which, in hindsight, I actually appreciate.

My taste has not come back after almost a year after treatment, and I remain
hyper-sensitive to anything spicy, salty, sour. But "sweet" is back ! And my
great joy is taking fresh green caradamom seeds imported from India (green
cardamom makes all other cardamom seem wimpy) with a little star anise
cluster, crushing both in mortar and pestle, and brewing soy milk with
coffee with the crushed spices, then adding the rare honey of the kapok tree
which has a dark, almost molasses, like taste. 2 liters a day keeps the
doctor away ? That's mother's milk to me.

My best wishes to you in your struggle with this !

best, Uncle Sally

'Given the choice between two evils, I'd take the one I hadn't tried before'
Mae West

Having been there, I empathize as well as sympathize. My taste buds went
totally weird before they departed. Water tasted like skim milk, coffee
tasted vile, etc.

The next thing to expect is extreme sensitivity to temperature. You may
find that you will need to have all liquids and solids at room temp.

Most people get their taste buds back after radiation. The first of mine
started to regenerate about 3 months after the last treatment (9/2006)
Some are just lately returning. On certain days, perhaps holidays on the
official taste bud calendar, they just turn off. Sweet is usually the
last one to come back. I could not enjoy a diet Coke until February. For
some this would not be a problem, but for me, whose blood was 1/4 diet
Coke, I missed it.

Do be prepared for your taste to have changed. Things you loved before
won't be as special, even though you can taste them again. You might
also find yourself appreciating things you didn't before.

Don't look for things to be the same after radiation. Things will most
certainly get better, but things will be different. Those of us who have
been through it rejoice in the difference because it is much more
preferable to the alternative.

Hang in there. It gets worse but then it gets better.