That disgusting soapy metallic cardboard taste! Suggestions?

Hi Louisa 

if you think  your mouth can cope with chewing gum you need a sugar free gum something likemorbutal the main ingredient to look for is xylitol as opposed to sorbitol.aAs you will  be susceptible to tooth decay. What you are experiencing is a common thing with the aggressive treatment , even now 20 month in on occasion I have a metallic taste nit often but it’s there 

Have yiu been  given any high calorie food drinks like Ensure or fortisip ? You really  haven’t to eat as treatment goes along it doesn’t get any easier unfortunately.By week 3/3 i has a nasal feeding tube  in have you spoke  with your  dieticians ?

Good luck Hazel x

Eat to live 

I’m afraid for a while that’s all you can do. At the height of my discomfort and pain I lived on  Fortisips. Just got them down as quickly as possible. 
I was absolutely OTT with mouth hygiene, doing something in my mouth every hour. 
I did find either carbonated water or Diet Pepsi dilutes with water were refreshing. 
It does get better but not for a while. 

Hiya, lovely Hazel,

I am now on Ensures via my PEG. It’s eating, but not as we know it.

My husband’s just got me Wrigley’s Extra Cool Breeze, but it tastes pretty rank. It seems to have xylitol and sorbitol and aspartame and mannitol!!

We’ll see if we can try some others, though now is not the time for browsing in the shops! I was wondering about Denteine (can’t remember how to spell it).

Sorry to hear you still have the metallic taste 20 months later!!

Thanks, as always, for your reply.

xxx

Hi

try anything you think yiu can eat just be careful with gum it really need some to be sugar free or when you get to the dry mouth stage which I am sorry to say that you probably will any other gum will rot your teeth.Have yiu git any mouthwashes ? I was prescribed bioextra which I still use .Like @Beesuit says eating is no longer a pleasure whilst going through treatment and in some cases die a good while after it’s like I said eat to live not live to eat. 

Indidnt have a peg mine was a nasal feedingbtube so has to drink    ensures or at least try to .Can u believe now I quite like them if I have a bad eating day I supplement with an Ensure never thought I would say those words lol 

But just look how many if us in here have been there and done it , the metallic  taste now I just get in with it know it’s not permanent and will go .

keep in touch 

Hazel ps thank  you for the lovely. Comment ! X

Thanks very much, Dani. The speech/dietician people are insistent that I must keep my swallowing reflex, but swallowing is so painful it makes me want to cry!

I will try your fizzy diluted drinks.

Reassuring that you got by with just the mouth care. 

Grateful for your help,

Louisa

I got badgered incessantly about swallowing after my NG tube went in. Please be assured that not swallowing for a while made no difference to me. I just tried super hard and frequently when i could swallow less painfully. Just nod your head and smile at them and get on at your own pace. 
It was the same with weight. I didn’t lose much but still got bullied. Hazel and I both put  things in our pockets when we got weighed 

Oh yes we did phones keys in fact I took some lead weights and put in my pockets once johns just reminded me if that !

oops. 

Plus the dieticians just smile sweetly at them  well apart  for  in week 4 she told ne to nibble on fish fingers chips and beans . To which I said I am not 5 years old snf serving as I am having a feeding tube put in tomorrow which part of I csnt swallow don’t you get ! 

H xc

Hi Louisa

I think you have to change your mindset and forget about eating for enjoyment. 

I found food either tasted disgusting or had no flavour whatsoever.  Plus there's the unpleasant texture in the mouth and trying to swallow.  I could only manage a few things in small amounts - Scandishakes prescribed by the hospital, Ready Brek, semolina and one flavour of soup pureed and diluted with milk.  In between I used Biotene mouthwash which really helped to make my mouth feel more cleansed plus lots of oral hygiene.   It really comes down to what suits you personally as I couldn't manage anything recomended by other people so a lot of trial and error.

Good luck with it and don't lose hope, it really does improve with time.

Linda x

Hmmm.  My clinic was too wily to fall for weights in pockets and heavy clothing.  I had to remove all coats, boots, jumpers etc at weigh in!

Linda x

Yes coats off but it’s amazing what you can hide in your trouser pockets