Stage 4 tongue cancer

Hello Jaz

Sorry to hear you’re struggling. 
I’m sure many people will be along soon to help you.

My hubby is 15 weeks post treatment and he can’t eat anything remotely spicy and can’t eat “proper” meat. He’s managing those tins of beans and sausages and stuff like that. 

He does the choking thing with some foods. He eats lots of milk puddings and soup but still struggles with real solid food.

I’ve not come across the hair loss other than to say people having extensive H&N Radio seem to lose their hair where they had the radio. Ken no longer needs to shave his face and has no hair from half way down his head. 

All I know is there are many people on this forum who are living great lives following this treatment. 

So keep on plodding on and hopefully you’ll come out the other side soon. 

Hi Jaz. 
we all heal at different rates and even 5 months post radio is still early days

I think it’s a question of sticking to foods you know you can eat and just dabbling with others. 
Did you get Fortisips or Ensures? Throwing one or two of those down I found helped and even 14 months in I do keep them on standby and have one when I’m in a hurry. 
You could try a mouthful of food and then the tiniest sip of liquid to help you chew it up rather than chasing food down with a gulp of water which is what a lot of people try. Sorry if that’s not what you’re doing. 
When things get back to nearer normal with Covid you might find help from acupuncture for saliva function. A few of us have. There is a particular protocol for it. 
Finally try sugar free gum. It gets the smaller salivary glands that aren’t hit by RT going. 

Slowly slowly and you’ll get there. 

Hi Sharon

I'm so so sorry to read of your story.... and I do hope your both on the road to recovery.....

Thank you for responding....I don't feel quite so alone in what I'm going through now.... I do feel for your husband I know exactly what he's going through....and to say, it will get easier for him .... Ive just started to eat chicken, but everything has to have either a sauce or gravy with it otherwise it's soooo dry.  I also started out with the PEG feed whilst going through treatment but everytime I swallowed it was just too painful so was put on a TPN (Total parenteral nutrition) food is put directly through your vein instead.....it was sooo much better!! Hopefully the choking "Thing" will subside more as we recover....the hair thing, I'm really not sure what's happening. ..my Dr did say it may be lack of certain Vitamins/Minerals...so taking multivitamins to compensate from what I'm missing from meat Vit B etc.....

I also hope that you are recovering well....what a shock it must have been to both be diagnosed at the same time...

Stay safe & look after each other xx

Forgot to add. 
Hair loss might well be stress alopecia and have nothing to do with nutrition 

Stress hormones tell your body to stop making hair faster than you replace it. It often looks like clumps of hair falling out. 
just a thought

Hi Jazz 

This is Hazel I am now 20 month post radiotherapy for tonsil cancer with several affected lymph nodes ,as others have said in the scale of things 5 month ian still early. I still can’t do anything remotely spicy  mild curry’s are just about ok but I mean really mild At your stage  inwas still eating and sipping a warm drink  help the food go down.I also always have a supply of Ensure high calorie drinks for those days I struggle ie today we had a roast pork dinner I struggled the issue with meat is it can still be difficult to swallow. But saying that yesterday I had a rare ribe eye steak no rhyme nor reason. Just baby steps some days 2 forward some days 1 back. 

I would say my saliva is now around 95% never thought  in those early days  would ever say that  ok I still use 1/2 a xyimelt at night time and chew sugar free gum during the day i also had acupuncture which I really think helped me with dry mouth 

hope this helps

Hazel x

Hey Hazel

Thank you for your message...... 

Everything I have to eat at the moment either has to be with some kind of sauce or gravy..... pretty sick of sauces at the moment.....I do still have lots if Ensure shakes though....which is my saviour at the moment.  May j ask what is xyimelt?.... I tried chewing gum to see if it could get the juices flowing....but mouth still ends up dry...and during the night is terrible....wake up with such a dry mouth/throat...I'm keeping my fingers crossed my saliva does come back. ...... still finding it difficult to put weight on though, and my hair, god only knows what's going on there....but, it'll grow back. ...hopefully!! 

You did great to get through all of that, and I'm happy to hear your recovering really well...... 

Keep smiling

Stay safe - Jazz x

Hi Daniel, 

Thanks for sending a message.....

I tried your advice and had a milkshake with my meal this evening to help with the dryness and that heled alot better than like you said drinking to get it down my throat. 

I'm hearing alot about acupuncture for the saliva.....does this really help?.... Will deffinately try 'Sugar free gum' if only for the bad breath...lol

Take care

Stay safe

Jazz x

Jazz

these are brilliant little things that help keep your mouth moist as long as you are producing some saliva

They are available in a few places like Amazon, the Mouth Ulcer Shop and Dental Direct

Dani. ..... so sorry....auto correct changed your name from Dani to Daniel....my apologies

That's fantastic......thank you for that, I'll get online and get some.... x