Eating and Taste

Hi John

I seem to recall that at around 5 weeks post CRT I was still just about on pump feeding although throughout I had taken a couple of Fortisips per day.  Taste probably came back around 8 weeks, but then it was very muted - and still is a year on,  I know what I am eating but the tastes are not like I remember them.  Not being able to taste is a big block to eating, although smell is a key part of "taste" and I find that stronger than the taste buds.  Aside from the ulcers making eating impossible I never really lost my appetite and ate for the calories rather than the enjoyment in the early days.  Now I do eat for the enjoyment, but chose carefully the food I have.  Little and often with food is good as is experimentation.  What you can/cannot take this week may be totally different next week!

I did end up with my jaw opening being fairly restricted due to the RT damage to my jaw "hinge" area.  With exercise I managed to get that back to near where it was over the period of a couple of months.  Your dietitian and SALT will be able to help you with all these aspects.

Remember it is still early days for you and recovery is a long haul often 2 steps forwards and one back.  Since this Christmas (I started CRT Jan 2024) I have noticed a major positive change in my eating.  Just keep on with trying and slowly it should come back.

Hi there, my husband finished his treatment a little over 6wks ago, he decided to go for the PEG, and for him it's a life saver, he lost a fair bit of weight during the second half of treatment when taking solids became impossible  however, he still only just managing to take soft food, his taste buds are near non excisting,but these will take time to come back, we have been told that they could possibly not be back to 100%,just another side effect of the treatment.However, don't give up eating, your taste buds still need time to recover. All the best x

Hi John,

I'm 7 weeks post treatment (my last RT/CT was on the 20th Dec 2024) and I am still on Fortisips.   Luckily, as it turns out, my Oncologist didn't give me a choice and just put me down for an PEG.  Everything I try to eat just tastes real bad (in fact I almost wish I didn't have any taste at all then maybe  I could just eat for 'fodder'.)

I have been told that it could take up to 12 months or more for it to return properly. I have also been told it's  a "marathon and not a sprint", sorry if this sounds depressing but I just wanted you to know that you are not alone in this, maybe it won't help, but at least you will know that it is not unusual.

Sending big hugs.

Hazel x

Peter

Many thanks for your response; not the greatest news that I wanted to hear, but I am grateful for your honesty.  As I said I have been more fortunate then many both with the cancer and the side effects and I guess my lack of taste is just something that I will have to live with and be grateful for modest improvements as time goes on.

All the best to you and I wish you well for the continuation of your journey.  Like you, I will have to employ coping mechanisms until I start to recover my taste, but be grateful that my sense of smell may become more highly sensitive and compensate going forward.

Best regards

John

MRSMM

Thank you for your response  gratefully received, again, not ideal nor what I wanted to hear; but like most news about side effects, it is a case of being grateful that I am each day further along this journey and can see light at the end, albeit a distant one

All the best to your husband and his journey, and I wish you both the best

John

Hazel

Many thanks for your response and like my responses to others, I am grateful. despite it not being the best news that I wanted to hear.

I guess I should be grateful that I am not unusual or alone, however, saying that, I would not wish such side effects on anyone, so knowing others are in the same boat is somewhat alarming and sad

All the best going forward and stay connected so we can see how we cope with this marathon of a journey ahead of us

Best

John

Hi John/Ned

I think it has been covered pretty well but whilst eating is seems pretty pointless without taste (I was a complete foodie) just keep getting as many calories as you can. You body needs them to get through this. My taste, 2 years on, is not where it was before but I do enjoy food again & my jaw used to hurt to open but I am now pretty much where I was before.

You are allowed to let you mood & your head drop from time to time, you have been on one hell of a journey (I still don't know why cancer is so popular!!! ) but just keep the belief & the fight to know things WILL improve & you will eat something & realise that you tasted it (but you may find that after a couple of mouthfuls the taste might fade again -sorry) Keep going fella - you can do this

Hi John 

I finished chemoradio June 2023... HPV16 plus Tonsil cancer...PEG in place for around 5 months....lateish August 2023 before I was eating something solid.... supplemented orally with Ensure 2cal... gradually built up to managing full meals but only eating to survive... little pleasure in the act.

Gradually my taste and appetite returned, 20 months on and I can now taste most things.... even my favourite curries.... some things still taste a bit off .... wine is a no go...and some meat dishes 

One of the first things I could really taste was Guinness alcohol free 

I lost over 16 kilos during CRT... Admitted to hospital for 12 days to stop weight loss....

Peter 

Good evening John, it is still in the very early stages of your recovery where your taste buds and saliva glands need time to adjust, I'm dependent although I can drink thin liquids so it's not too bad even having a "cup of soup" once a day which i look forward to as its a change from the food supplements. You will get your taste and appetite back and before long you will start to put weight back on. Wishing you all the best slowly does it. 

                                                                                     Chris 

Hi John. I was ng tube fed for 3 weeks prior and post I then took my tube out and I was able to swallow i did so with the  nurses permission I got little pleasure from food but took the attitude food is fuel and the mantra live to eat not eat to live. I at because I has to. I aimed for 2500 calories a day to start with 6/ensures then added soft food. Gradially I replaced  each ensure with more food poached eggs became my go to food. 

my blog below might help when you see what I did. by 6 months food stared to become pleasant. Niw there’s very little,I can’t eat. Calories by any means are the secret to a good recovery. Hope you get yiur head in gear , forget about 3 square meals a day I ate 6 small plates often the same thing but slowly you’ll get there. It’s a marathon not a sprint. 

Hazel x