Dad’s post treatment loss of taste

Hi Helen…

im the same, I have very little taste and I don’t enjoy my meals anymore, I was hoping in time this would change, I’m only 6 months since my treatment finished!

I find pasta dishes the best like mac and cheese and it’s a good way to get the calories up! I make a lot of soups also good way to get some veggies in 

caroline xx

Hello Helen,

That's so sad about your father. We don't realise how important the social aspect of food is till it's gone. I was like Caroline. I could taste but it was all low key and confused at six months but by a year I was much happier. The doctors say improvement continues to two years and what you have then is what it is but I disagree. The vast percentage of return to some sort of normal does happen in those first two but even up to nearly five I'm still tweaking my "new normal"

The problem is that the whole taste pathway from taste buds themselves, neves supplying this taste buds and parts of the brain can all be impacted by CRT and surgery. Some permanently. 

Can he taste anything at all or is it all just bland nothing? Has his dietician any idea?

HelenCatLover43 said:

He’s able to smell foods still & can still enjoy textures.

I used to blow the air in my mouth back up and out through my nose while I chewed so I could get a taste of what I was eating because at first, though like your father I could smell, the food tasted entirely different

The first meat I could enjoy was a slow casserole of fatty lamb with spices like cumin that provided aroma but no heat.

Hi Helen. Tell him not to give up I’m just  over 5  years snd still noticing improvements. I’ve just had a major for me improvement I have had what is known  as burning f tongue syndrome for a good few years. Just recently it went I’m now able to eat some things that I couldn’t previously. I can’t tolerate any spice so like Dani says I use coconut milk and cumin cinnamon coriander to make aromatic dishes. I sue chicken thigh not breast that too hard to swallow even now. Slow cooked lamb I find shoulder works best  lots of onion. Noodles not rice, rice sticks. 
I have home made soup every day varying the content to what’s in season  

pork unless very fatty hard. 
salmon in a cream sauce , most fish if he like oily fish they are stronger on taste. 
have you seen this link 

https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

Hi Helen 

T2N1M0 tonsil cancer

I finished 6 weeks of Chemoradiotherapy (4+30) in early June this year, had to learn to eat again after PEG tube feeding with protein liquids, absolutely no taste, could not drink anything fizzy, spent many weeks on video calls to oncology support teams, my wife always challenging me to eat different things, slowly but surely taste is returning, been to Tenerife and enjoyed the food there, now going for chippies at the seaside, going out for lunch, enjoying Diet Coke with meals, also developed a taste for 0% alcohol Guinness and St Peter's Without 0% stout, tea and choccy biscuits most nights (Tunnock's Teacakes)  even had Christmas dinner out yesterday, had a couple of the milder Indian meals out, managed OK  but made a mistake with a starter...chilli dip and pakora...ouch! jug of water and avoid for a while yet.

Things are nowhere near back to normal with my taste but they are improving day by day...its a long process.

Good luck

Peter

Hi there.  Strong tastes that helped me were/are kippers, frankfurters, Godston organic cheddar, onions, garlic etc. pataks aubergine pickle, English mustard  and m and s chocolate cream eclairs.  Best wishes.  Liz xx

Hi Helen

I am now 4 years post my second lot of radiotherapy so my taste buds are a bit more damaged than some but I still have a semblance of taste albeit dulled and things not tasting quite like they used to.I had jaw cancer so my situation may be a little different to your dad's. 2 years is a long time to have no taste at all though so that must be hard. I also find my sense of smell is fine so often enjoy the aromas of food that others are eating but that I am unable to manage.

It is wonderful that you are so supportive trying to help your dad find something that he can enjoy eating. My daughters get very concerned when I visit them for a meal as I am unable to eat most of what they provide in spite of their best efforts. I always tell them not to worry about me as I will bring my own food as they are not in a position to understand the difficulties around finding the right moistness and texture that works for me.I still enjoy the social interaction that eating out holds.  It has taken me a lot of trial and error to find what works for me and I am now on a fairly balanced diet and found some menus that work well. It has also taken me some time to gain acceptance of having to eat differently from everyone else. I do miss eating a lot of things but it has come to the stage that I have managed to move on and accept the way things are as I will be on a very soft/pureed diet for the rest of my life. I do hope that your dad is also able to get to this position too but it definitely takes time.

For me I have found home made soups are a good way to get variety into my diet. They are nice and moist and I can make it to the texture that works for me. Adding natural yogurt into it seems to raise the taste a bit and give it a zing. For part of my Christmas meal I am going to make a seafood chowder as my special treat. I have also found that if soup is on the menu when I go out that is a real plus and then I don't have to eat my own food. Tiramisu is one of my go to's for a special dessert but also trifle works well with some sherry in the sponge base. They all taste a bit different for me but are quite acceptable.  The one food I can taste correctly are bananas so I take advantage of this and add it into smoothies and desserts.

You just have to keep experimenting but also accept the new normal in your life and that helps too.

Best wishes

Lyn