Taste: As mad as a box of frogs

Anonymous7/6/2023

Anyone else experienced this? Interested in whether it's possible for things to settle down? (Surgery Dec 2013, Radio finished 21.03.14).

I remember saying to my nurse that, despite being quite unlucky with Grade 4 mucositis, after my hemiglossectomy and radio, that even though I now have a gobfull of scar tissue and adhesions... I had managed, somehow to have a nearly intact sense of taste!

That lasted about a month.

Now my tastebuds seem to have the following repertoire:

1. Bitter as b!tches
2. Burnt soap
3. Nothing

This can be for the whole 'dining experience' (oh boy, do I stretch the meaning of that phrase), or it can change between these three options literally from spoonful to spoonful. Sometimes the first half or so of the soup/yoghurt/pureed-everything can taste approximately how I remember it, then abruptly it will change to bitter... or the flavour vanishes and it tastes of what I can only describe as 'burnt soap'.

It's disappointing, because this felt like the ONE thing I'd been 'lucky' with.

I now have no incentive whatsoever to actually try to eat. Although, because I love my family and friends, I definitely DO still try, but with ZERO reward.

Food/eating/cooking used to be a MAJOR pleasure in life for me. Now I can't even cook because I have no idea how much of stuff to put in, no idea how things taste. I did a chicken casserole the other week, which everyone said was "delicious", but I found out it had been awful - far too much seasoning.

I was a lovely, big, fat, Mama - 22 stone! I used to be absolutely full of joy cooking giant, delicious dinners for my family! Now I can't. One more flippin thing I've lost. Boo!

Tell me, why the abrupt deterioration? I suppose this is yet another radiotherapy thingy. Will it ever improve? Ever ever ever ever??? (Trying to see the funny side - sometimes more successfully than others

This isn't a moan, honestly, I'm just wanting to know - like we all do I suppose - what to expect in the mid to distant future?!

lornal

Cooking

I used to cook for my family.  After the 2007 tonsil cancer w/ radiation and chemo - I stopped cooking.  Eventually, I started cooking again!  Big meals, new recipes, things I was scared to make before.  When we visited my mother-in-law - we bring stuff with us to make great meals (she is now in an apartment - and doesn't have many of the cooking stuff she used to).

It probably took well over a year to get to that point - where I wanted to cook, and food tasted good again, and I had the energy.

Fast forward to 2013.  I started having lots of troube swallowing - big pills were tough, as were bread and meat.  I still cooked for my family.  Although I couldn't eat much there was still the social aspect of meals that I still enjoyed.  But, by the end of September, I could only whisper.  Now, I couldn't eat, and I couldn't talk.  What was the point of cooking or even sitting down with my family for a meal.

Now, the middle of 2014. After another cancer episode that left me without my larynx, I am getting back into cooking again.  The surgery in January rebuilt my esophagus, and the wonders of the Electro Larynx lets me speak again.  My energy is still lacking - and I will only cook (even simple meals) on the days I do not work.

I went on vacation in August a visited family and friends.  On the last night with my sister, I cooked dinner for all of us.  At a friends house, I learned how to can, and make jam.

Today - I need to find a new recipe for Chicken thighs (finally cool enough to turn on the oven).  And, we will be going to an apple orchard later today to get lots of apples.  I need to find out what how to make apple butter, apple jelly, apple sauce, and anything else I can w/ my new hobby (canning).

I really miss smelling - so anything I can - someone else needs to open it for me to make sure it is good.  I avoid leftovers unless less that 24-hours old.  And I haven't really enjoyed a good hamburger for years. (my jaw sometimes hurts opening my mouth real wide from the 2007 cancer).

You will get there!  It will be a slow process - and one day - boom, your tastebuds will be back.    For me, it happened overnight - probably 3 months after treatment.  I had been drinking a sports drink that had potassium.  Better than trying to get the pills down, or getting an IV.  One night I drank it like I should.  The next morning I drank some more, and discovered then just how nasty tasting that drink was.  What a shock!

Patience - get lots of sleep and eat what you can to keep your energy up.  Maybe avoid food in a can and using actually metal utensils.  Use plastic when you can.  You might find you can stomach some of the food better that way.

Lorna

2007 & 2014

Skiffin16

Come Back...

More than likely you'll get it all back, or nearly all...

It took me two years to completely get my taste back. But quite a bit returned between 4 - 6 months.

A lot of times, it would disappear after the first bite.., but eventually it got there.

JG

corleone

Will slowly come back

I am 2 years post rad and the taste returned (almost) completely. I don’t have any troubles eating, except that I need to sip water with some drier foods.

3 weeks into radiation and a month after, there was no taste (well, even worse, everything tasted bad). Taste started to came back in small steps.  In my case the first to reappear was the taste for salt (1 month post radiation). 2 months post radiation sour taste came back, followed (after another month) by bitter. Taste for sweet took much longer, started to come back 6 months after radiation and much better after a year. I also experienced taste “fatigue” meaning that even when the taste came back, the first few months I felt it only during the first 2-3 bites, then faded away quickly. Later on, the taste was gradually more persistent.

 

 

phrannie51

It's going to get better...

but this part seems to be the slowest part.  I'm still getting improvements on things, and I'm two years out.  The first bite of everything is the good bite.....taste fatigue seems to affect everyone in the beginning...and by the third bite taste has flown the coop.  That lasted probably about 8 or 9 months for me.  My first real taste experience was with a dill pickle....I would never have eaten a pickle by itself before treatment, but if I was dying to "taste" something during the day, I'd eat one .

I used to be a good cook, but over the course of 40 years, have gotten so I don't like doing it.....but since it's a chore I still have to do.....these days I have one shot at seeing how something really tastes before I serve it.....the first time I made veggie soup, my husband (who likes salt) could hardly stand it.....LOL.  I've learned to not go by my taste on even salt and pepper and let folks do their own. 

Just be patient....it's going to come around.....  What I'm waiting for is for oranges to finally, FINALLY taste good.....I really miss them!

p    

Anonymous7/6/2023

What fabulous replies! You

What fabulous replies! You give me so much hope!

debbiejeanne

Estelle, I lost mine with

Estelle, I lost mine with rads for a while also.  then they returned.  then i lost taste again after laryngectomy.  after about a year i was able to taste spicy foods.  your taste will get better so don't be too discouraged.  like the rest of healing from cancer, it may just take a little while.  stay positive.

dj

Anonymous7/6/2023

debbiejeanne said:

Estelle, I lost mine with

Estelle, I lost mine with rads for a while also.  then they returned.  then i lost taste again after laryngectomy.  after about a year i was able to taste spicy foods.  your taste will get better so don't be too discouraged.  like the rest of healing from cancer, it may just take a little while.  stay positive.

dj

It's soooooo

It's soooooo sssslllooooooowwww!!!!  

TracyLynn72

Estelle_H said:

What fabulous replies! You

What fabulous replies! You give me so much hope!

It does come back!

My taste buds were back to my "new normal" about 4 months after I finished rads.  The doctor said that was VERY quick, but he wasn't surprised because my taste buds left literally at my THIRD rad treatment.  He had never seen anyone lose taste that quickly.  Everything tasted gross...to me it tasted sick, like I had a bad cold and I could taste mucus.  Gross, but true.  Now they are back, just different a little bit.  I like some things that I never did before and I don't like things that I always have.  I hope yours are back very, very soon!

donfoo

wide range

Everyone is different, same old saying. I got lucky and did not lose tastebuds for much time. Nor did I get much offtastes, just disappeared and that led to loss of any joy of eating. Eating becomes a chore and slow too with all the side effects still lingering.

Mine bounced back quickly, some take longer. All you can do is make yourself eat as much as you can and supplement when you are short. There is no way to predict the "new normal" so just hang in there knowing it will get better.

wmc

Watch out when first cooking....

Cooking.... use very little spice. I have lost all smell and some tast and I too learned the hard way. I opened up a jar of crushed garlic and I can't smell it. So I used what I thought was about the right amount on the meat I was cooking. My wife [god bless her] came into the kitchen with tears in her eyes and asked If I think I have enough garlic. It burned her eyes in the other room. When I ate it I then knew what she ment. Oh I had way, way to much. I have to stop and remember I can't smell and my tast is gone, but there's isn't. Now I cook with how I uesd to and not by tast. They can always add but can't take it away.

I'm sorry you lost so much of your tast but it will come back slowly. I lost mine through so much cutting and tho I have not lost it all, it has changed and doesn't look like it will recover. Don't get me wrong I still have some tast but not much on the toung, only when I swallow. Kind of strange but it's the "New ME".

Best of luck to you, and your family. [Have them tast it for you] Rember it gets better but it is  s l o w  at times.

Bill

Anonymous7/6/2023

wmc said:

Watch out when first cooking....

Cooking.... use very little spice. I have lost all smell and some tast and I too learned the hard way. I opened up a jar of crushed garlic and I can't smell it. So I used what I thought was about the right amount on the meat I was cooking. My wife [god bless her] came into the kitchen with tears in her eyes and asked If I think I have enough garlic. It burned her eyes in the other room. When I ate it I then knew what she ment. Oh I had way, way to much. I have to stop and remember I can't smell and my tast is gone, but there's isn't. Now I cook with how I uesd to and not by tast. They can always add but can't take it away.

I'm sorry you lost so much of your tast but it will come back slowly. I lost mine through so much cutting and tho I have not lost it all, it has changed and doesn't look like it will recover. Don't get me wrong I still have some tast but not much on the toung, only when I swallow. Kind of strange but it's the "New ME".

Best of luck to you, and your family. [Have them tast it for you] Rember it gets better but it is  s l o w  at times.

Bill

Honestly, I haven't been here

Honestly, I haven't been here too long, but I love you all to bits. I hope you know that x x x