Hondoo

jackflash22

Hondoo, you say you can eat anything even a beefburger after it goes through the nutrimixer. What enjoyment do you get out of it, because you can't taste it. I can't taste the ensure drinks I cant even 'burp' so not even a secondhand taste. When you talk about your diet and eat anything I feel like your enjoying the taste but how can that be. I have had when I was with my family had a taste of my sons brandy coke I dipped a mouth swab  (clean one) into it and 'boy' did that taste good. I chewed a big ripe cherry cos I couldn't resist it but it took the rest of the day trying to get rid of it I had bits of cherry skin in my teeth, under my tongue. I suck on an ice lolly and dribble it out my taste buds are OK. I still haven't made up my mind whether or not to get my throat opened.  

 

just read your profile and  realised you were able to swallow that's how you taste things, I was thinking you couldn't swallow anything and was on a PEG permanently.

Hondo

Hi Jackie

 

I don’t know or understand it but somehow I get a sense of what I am eating through the PEG tube. I guess sometimes it is by burping I get the sensation of taste, I am not sure. I did do a test one time after eating and found that the juice or saliva in my mouth was the same color of what I was putting in the PEG tube that was something I did not understand. I also have a problem with food buildup in my throat, how does it get there is what I wonder because I have a hell of a time trying to cough it up to get rid of it or it will give me bad breath. There are a lot of things I put into the PEG that I get no taste at all from and there are thinks I put that just the little taste I get is enough to satisfy me. I hope this helps

 

Tim Hondo

Anonymous7/6/2023

I could smell the Ensure that

I could smell the Ensure that was going in my NG tube in hospital, and I could smell the Ensure I was putting in my own PEG tube. Sometimes I can't tell whether I am smelling things or tasting them.

I don't have tubes now. I'm stuck on liquids and thin puree. I have lost 8 stone in the last 12 months (I was 22 stone last Spring!)

Taste is a very strange thing to me now. Sweet things are either bland or disgusting. Especially strawberry flavoured things - VILE.

I tend to fare better with savoury tastes, but if the taste is too strong or salty - that causes great pain.

I miss eating fruit so badly - I have tried fruit juices and smoothies, but they have burnt my mouth - too acidic.

Sometimes the taste of something seems to change from mouthful to mouthful. Sometimes I will have one nice mouthful of thick soup, then ZERO taste for every mouthful thereafter.

And all of this changes from day to day.

I do keep trying to thicken up the puree, but it always causes injury.

I'm feeling the frustration in your post Jackflash. People do keep saying things get better though. They do. Having cancer has shown me that I must trust people MUCH more than I ever did, and so I do try to trust what they say - people who are further along.

Hondo

Estelle_H said:

I could smell the Ensure that

I could smell the Ensure that was going in my NG tube in hospital, and I could smell the Ensure I was putting in my own PEG tube. Sometimes I can't tell whether I am smelling things or tasting them.

I don't have tubes now. I'm stuck on liquids and thin puree. I have lost 8 stone in the last 12 months (I was 22 stone last Spring!)

Taste is a very strange thing to me now. Sweet things are either bland or disgusting. Especially strawberry flavoured things - VILE.

I tend to fare better with savoury tastes, but if the taste is too strong or salty - that causes great pain.

I miss eating fruit so badly - I have tried fruit juices and smoothies, but they have burnt my mouth - too acidic.

Sometimes the taste of something seems to change from mouthful to mouthful. Sometimes I will have one nice mouthful of thick soup, then ZERO taste for every mouthful thereafter.

And all of this changes from day to day.

I do keep trying to thicken up the puree, but it always causes injury.

I'm feeling the frustration in your post Jackflash. People do keep saying things get better though. They do. Having cancer has shown me that I must trust people MUCH more than I ever did, and so I do try to trust what they say - people who are further along.

Ensure

I like Ensure with my Oatmeal cookies that my wife makes for me. I don’t eat a lot of sugar so my wife makes my cookies using only Honey and the Ensure I buy only had 5grams of sugar in it. But during the day and sometimes at night a good glass of cookies and milk can go a long when you are hungry.

 Sometimes I look and think I am getting fat but the scale keeps telling me No.

Tim Hondo

Anonymous7/6/2023

Hondo said:

Ensure

I like Ensure with my Oatmeal cookies that my wife makes for me. I don’t eat a lot of sugar so my wife makes my cookies using only Honey and the Ensure I buy only had 5grams of sugar in it. But during the day and sometimes at night a good glass of cookies and milk can go a long when you are hungry.

 Sometimes I look and think I am getting fat but the scale keeps telling me No.

Tim Hondo

Ensure is a bloody lifesaver,

Ensure is a bloody lifesaver, if you ask me!

Hondo

Estelle_H said:

Ensure is a bloody lifesaver,

Ensure is a bloody lifesaver, if you ask me!

bottle or two

A bottle or two a day helps to keep the doctor away. It is not cheep but it is cheeper then the doctor.

Anonymous7/6/2023

This is where I feel very,

This is where I feel very, very lucky to be in the UK. My Ensure (and everything else) is free. Sadly, the Tories are systematically trying to privatise the NHS. They are borgeiosie criminals who are stealing our precious NHS from under our noses. And who will suffer? Not them. They can afford fancy private doctors. No, it's us, the poor Proles who will suffer, and yet we've been paying into it since most of us left school and started work at age 16. Yep....

Guzzle

Estelle_H said:

This is where I feel very,

This is where I feel very, very lucky to be in the UK. My Ensure (and everything else) is free. Sadly, the Tories are systematically trying to privatise the NHS. They are borgeiosie criminals who are stealing our precious NHS from under our noses. And who will suffer? Not them. They can afford fancy private doctors. No, it's us, the poor Proles who will suffer, and yet we've been paying into it since most of us left school and started work at age 16. Yep....

Free?

Estelle, as you pointed out we have paid a lot of money. But I gladly do so as it is free for all uses. The NHS is still truly great. If you search this site the topic has been hotly debated. Don't disagree about the etonian supper club in government. I worry that political convergance and elitism don't offer us much choice. Did you resolve your issue mate? Had everything crossed for you. G.

Anonymous7/6/2023

Guzzle said:

Free?

Estelle, as you pointed out we have paid a lot of money. But I gladly do so as it is free for all uses. The NHS is still truly great. If you search this site the topic has been hotly debated. Don't disagree about the etonian supper club in government. I worry that political convergance and elitism don't offer us much choice. Did you resolve your issue mate? Had everything crossed for you. G.

New lesion is still there

New lesion is still there Guzzle. I'm at clinic on Wednesday. I'm trying to keep calm  work is keeping me very busy which is good in situations like this. 

It's  a couple of weeks since the last lump, biopsy and "scare", literally, and if this is how it's going to be - frequent "scares", I have to LEARN to stay calm... for emotional survival! I'm not experiencing anxiety, more like a mild feeling of 'sadness'. 

But so far I am surviving, every day I count as a victory. You agree? 

Guzzle

Estelle_H said:

New lesion is still there

New lesion is still there Guzzle. I'm at clinic on Wednesday. I'm trying to keep calm  work is keeping me very busy which is good in situations like this. 

It's  a couple of weeks since the last lump, biopsy and "scare", literally, and if this is how it's going to be - frequent "scares", I have to LEARN to stay calm... for emotional survival! I'm not experiencing anxiety, more like a mild feeling of 'sadness'. 

But so far I am surviving, every day I count as a victory. You agree? 

Good luck

Estelle, yes. Mild sadness - PTSD? Also added anxiety with every ailment. Par for the course. Given your profession you know. I havn't needed counselling / meds thus far but can see how they may help. Hopefully wont need them now. You got people around you? Gary

 

 

 

 

Guzzle

Guzzle said:

Good luck

Estelle, yes. Mild sadness - PTSD? Also added anxiety with every ailment. Par for the course. Given your profession you know. I havn't needed counselling / meds thus far but can see how they may help. Hopefully wont need them now. You got people around you? Gary

 

 

 

 

Chances

You mention your chances in intro. They are good! G.

Anonymous7/6/2023

Guzzle said:

Chances

You mention your chances in intro. They are good! G.

I had some fab counselling

I had some fab counselling from a Macmillan Cancer Psychologist, we worked through the PTSD. Like most of us I get a bit low at times. I need to be a bit more "glass is half full"! You're right 56% aren't bad odds. 

Guzzle

Estelle_H said:

I had some fab counselling

I had some fab counselling from a Macmillan Cancer Psychologist, we worked through the PTSD. Like most of us I get a bit low at times. I need to be a bit more "glass is half full"! You're right 56% aren't bad odds. 

worst case

actor in your age, hpv status etc that is worst case I would imagine mate. Prob much better in reality. But a lot of people out there would take that. G.

Anonymous7/6/2023

Glass is at 56% - better than

Glass is at 56% - better than 50/50 LOL ;D  I can't sing the praises of Macmillan counselling enough... things ARE brighter now. Also beign back at work - forcing me to stop thinking about my flippin self all the time! Being at home for 6 months did me no good whatsoever!