Taste - bit of hope

Alanl said:

ent consultant at 6 months and he said to me after 6 months taste is probably as good as it will get .

Aaaarrrrgh! Why do they do that. It’s not true. Improvements continue to well past 2 years they are just more profound earlier on. 
I still notice improvements at nearly 5 

Thanks for a lovely post and the encouragement it’s giving. 

Hi AlanI,  I didn't really get much taste back for about a year. Before that eating was a real chore, which I didn't look forward to at all. It did start to come back a bit hit and miss at first, but it did come back. Don't despair you still have plenty of time to get your taste back, which I'm sure you will.

Ray. 

Hi Alanl, I’m sure you will continue to improve. I remember finishing in my treatment last year on the 26th August and feeling very disheartened with the lack of taste. I’m now 15 months post treatment and it’s an ongoing process of improvement , I can now eat out and apart from chilli or hot curry , I can taste most things. It’s so good read that it continues to improve. Best of luck for future taste. Debbie 

Hi Alan I too like Dani want to shout !,,,,,,Dont feel low please in scheme of things 6 month is really early although you might not think it. I’m just over 5 years and still getting improvement s albeit tiny ones but shows it’s a long haul. At 6 months I had no interest in food it was eat to live not live and food is fuel was  my mantra for a good 15 months.

A kfc chicken fillet wow even I would have struggled with that for a good few years even now I can’t do a burger unless I’ve made it they tend to be dry.it’s not unusual to have to use liquid I tended to sip a small amount herbal tea to make mouth moist then put food in. 

keep in touch hope this helps. I’ll pop a link in to a cook book that may help.

www.yumpu.com/.../cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

hugs Hazel 

Hi Alan

I finished chemoradio for tonsil cancer in June, taste has been returning bit by bit, certain foods do nothing for me but others are becoming more enjoyable, cup of tea and chocolate biscuits are now much more enjoyable, fish and chips are a treat, liver and mash is another that is now a regular on the menu.

I am hoping for still more improvement.... oncology team reckon that a year post treatment will bring more taste and enjoyment to eating.

Peter 

Thanks Peter i finished in March and not as far forward as you are with taste but have bit of hope now. Used to love liver and mash but that sounds like hard work at thr moment . Good luck

Thanks for this encouraging post Alan, we all recover at different rates so I'm pleased you have proved your consultant wrong as it is a bit annoying when they say things like this as it does not give people confidence during the recovery period, keep up the positive vibes, take care.

                                                                    Chris 

Used to be one of my favourites AlanI, hopefully, it will not be long until you are tucking into your favourite food again. 

                                                             Chris 

Hi all,

I had surgery on my neck in May to remove the growth and after a few days my eating was ok again.

Then I had 30 sessions of radiotherapy which finished in August. 2 weeks in and I lost all taste.

I have regained taste to some extent in the unaffected side of my mouth but the affected side is just sore along with the tongue. I have no feeling on the left side of my tongue except my tongue on that side seems to feel like I have rubbed sandpaper on it (weird as I cannot feel hot/cold foods).

Food is a complete and utter chore. I am relying on protein shakes. I can swallow but my mouth is so dry, it is hard to stomach any 'proper' food. Tried some mashed up stew tonight with runny gravy and almost gagged.

Each food I try (because I crave it due to the smell) leaves a bitter disappointment and is quite upsetting and puts me off that food from trying ever again.

I am having regular catch up with dieticians etc who just encourage to eat yoghurts etc.

I feel like I will never eat proper food again, and although the initial surgery seems to have been successful, I now feel despair at the thought of not eating again. And then I feel guilty about thinking that when so many people have worse issues. Its driving me crazy and it just seems never ending and with that and the dry mouth that keeps me awake at night is just shattering and I have no idea what to do.  

Sorry to vent - Paul

daddypig said:

I feel like I will never eat proper food again, and although the initial surgery seems to have been successful, I now feel despair at the thought of not eating again. And then I feel guilty about thinking that when so many people have worse issues. Its driving me crazy and it just seems never ending and with that and the dry mouth that keeps me awake at night is just shattering and I have no idea what to do.  

Sorry to vent - Paul

Vent away Paul. This is the place to do it.

Actually around 12 weeks is still fairly early. I wasn’t up to eating for anything but survival till 6 months. At 12 weeks I was still on morphine with an ulcer running down the whole length of one side of my tongue. 
Don’t despair. Recovery is a long road of steps forwards and backwards. I got excited about eating but found to my dismay that I was disappointed time after time so I put enjoyment away and ate to heal. Slowly some foods became enjoyable but even then something I enjoyed one day was rubbish the next. 
The oddest thing was a good flavour first bite which then completely disappeared after the second. 
Try this. A mouthful of food with just a tiny sip of a warm drink to act as a proxy saliva when you chew. Chase it down with a little more drink if you need it. 
Chew sugar free gum in the day and carry a pocket spray with water in it. It’s much more effective at moistening your mouth than sipping water 

Try a xylimelt at night. 
One thing I’ve tried recently is taping my mouth closed at night. Stops me sleeping with my mouth open, snoring and drying my mouth up. 
Hope some of this helps