Hi Guys and Gals,
Just wanted to share a frustration that I know we all live with but I need to vent...
We took the kids out today to do some things; just to get out of the house. On the way home I had planned a surprise trip to the ice cream shop that has opened again. Kevin obliged, but got really crabby. We got there and he refused to eat a cone. The kids choked theirs down feeling guilty with every bite because ice cream was always dad's favorite. Now he can't taste it, so why bother. On the way home he made no bones about how angry he was about the situation, furthering the guilt. I hate this...something as simple as an ice cream cone is lost to cancer. Just so wrong. I know to many of us that eating, period, is a thing of the past, and I by no means want to sound ignorant to that, I'm just venting....PET on Tuesday....

Sorry to hear. I don't eat or can really taste ice cream anymore either. I think it has to do with the sugar, fruit, which I have a problem with tasting, and it's been like this for a while. It can become frustrating not being able to eat like you once did, but there are plenty of other food options, and ways to work around it, and basically trial and error to find out what you now like, but what you don't like today, doesn't mean you won't next week.

Good luck with the PET.

Hi Kathy,

In my opinion, being a caregiver is just as or equally difficult as being the patient. Those of us fortunate to have someone in our lives that help us know full well.

I look at my Marcia and how positive and strong she is and I'm in awe. One quickly gains perspective and realizes that "love" above all else, is by far the greatest blessing in life.

Allow me to share some feelings that might shed perspective on your husband's reaction. I'll reach the halfway point in my treatment next week so I'm still on steroids to help with chemo treatments. I can tell you that my emotions have been on a roller coaster ride! Irritability has been at an all time high!
Little things as stupid as the beeping of the IV pumps or a microwave makes me crazy! Not being able to eat normally is brutal and hearing someone crunch chips or an apple is too much for me to handle. I literally have to excuse myself and leave the room/area. I can't explain it.

Oddly enough at this point I can still taste and ice cream is a favorite of mine. However, the cold causes some radical pain so it's out. Liquids and soft foods are it and they need to be neither too hot or too cold. I have to have everything "Baby Bear" Ha!

It may be something he needs to detach himself from. For me, it's as simple as leaving the room or put in the ear buds and crank some tunes up.

I can tell you it's troubling to me and I'll be seeking some guidance as I go through this both during and afterwards. Life changes forever when you hear the words "You have cancer" and to say it's a difficult adjustment is a huge understatement. I do hope you all find a way to make life palatable as things move forward.

Positive thoughts and prayers.

"T"

The problem is....we are a year and a half out!!! I'm thinking it isn't coming back..I just need to be more careful in my planning.
Thanks for the support guys. I hate the new normal and had hoped by now we'd be more "normal". We'll handle it and move on!
Kathy

Does he have any taste? Mine has been very slow in returning but I am finally getting back some of my sweet and salt... The two that seemed the most illusive. And I'm almost 2 years out. I can taste the natural stuff and fruit isn't so good sometimes as it can be bitter but slowly very very slowly it's happening. I get your husband's frustration, but you're not his whipping boy he needs to know if you could change things you would - but making you and the kids feel guilty isn't nice.

Last night he ad a bowl of Frosted Mini Wheat before bed. He said "huh". I asked what that meant and he said "I tasted sweet for that entire bowl of cereal." First time. Maybe there's hope. Thanks for saying you're 2 years out and it's just coming back Cheryl. I will let him know.

Kathy, i'm sorry ur husband is going thru this. it does take a while for the tastebuds to return. i'm glad he enjoyed the bowl of cereal. that's a start. maybe ice cream will be next. i'll keep my fingers crossed. u, ur husband and ur family are all in my prayers. hang in there it will get better it just take a while.
God bless,
debbiejeanne

Hi Kathy, I'm really sorry you have to go through this, and I'm sorry Kevin does too.

Shortly after I finished my first waltz with Madame C, during which I lost my sense of taste entirely just as suddenly as if someone flipped a switch from "Taste" to "No taste;" a friend introduced me to a man who had been through the process 5 years previously.

His friend told me that A) the sense of taste DOES return fully, and B) it took him 5 years for this to happen.

My first recurrence was in my liver (distant metastasis) 17 months later; and although I'd recovered about 40-50% of my ability to taste, Ice Cream was still out for me. What has always puzzled me about this however, is that fact that I was able to enjoy and taste milkshakes made with Ice Cream! Weird, but there it is, and today I still can't eat ice cream.

Another thing is the fact that most chemo will mess with the sense of taste. I don't have a clue as to why, that that's been my observation after my third waltz around the floor (I'm in remission the third time for these past three weeks now.)

Get him a milkshake and if he can't consume it, do it yourself as a reward for being such a great, caring caregiver and spouse!

Chemo kills fast acting cells like cancer, but other fast acting cells like hair, nails, nerves, hearing, mucus membrane, including taste buds, and nerve transmission of taste to the brain.

Hi Paul,

Right you are! I think that taste is the first to bite the dust, it was in my case.

I'd add the the inner ear, I lost ~50% of my hearing range because the cisplatin got either the fine hairs in the cochlea, or the nerves leading from them to the auditory center in the brain. And every other chemo has taken a bite from the remainder.

Some of these nerves will grow back, I suspect that such is the case with the ones involved in taste.

Also, if you catch it soon enough, loss of feeling in the extremities will likely reverse (recover). Mine has already lessened somewhat even though it's only been 3 weeks since I got the word that I'm in remission again.