Hello

The dieticians are recommending eating portions of food 3 times a day and he just can't do it.  The sensation of swallowing is so horrible he can't do it. He says it's not painful as such.  Any tips and tricks to get some food in via his mouth please!

x

Hi and welcome from me.  I have only had surgery for my cancer so am not best placed to help you, but there are plenty on here that can.  I am sure they will be along shortly.

Hi I’m 4 years post radiotherapy for tonsil cancer with several affected lymph nodes. From end of week 3 I was totally reliant on my n g feeding tube for water medication and all nutrition. If he’s had a peg fitted and can’t eat start using it that’s why it’s there. It’s a tough process if I can do it anyone can. If he’s lost appetite there’s little you can do he does need food by any way possible. You can try soups with added cream  poached eggs with hollandaise sauces. extra calories but be careful on sweet things as well need ti watch our teeth presume hes on duraphat toothpaste. My blog below  might help  Will post link for foods but remember peg there for a reason . If he looses too much weight the dieticians will be on ti him.sorry I misread just use peg  the dieticians sometimes are clueless on how hard it us  

once appetite goes it’s very hard to maintain nutritional  needs.  The mouth and throat take a battering. 

https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022
Hazel x

Base of tongue SCC was my diagnosis too 

It isn’t easy. Sometimes it seems impossible but though the road is tough it’s doable. 
Side effects are manageable. Three weeks is about the time that side effects kick in so you need to be prepared to use that PEG. 
A day at a time is the way to go 

We are all different but we all get through. 
Stick around. No question is silly and there is somebody around to answer any of them 

Walnuts said:

The sensation of swallowing is so horrible he can't do it. He says it's not painful as such.  Any tips and tricks to get some food in via his mouth please!

Don’t bother. Use the PEG. I found it wasn’t worth fighting

As everyone is saying, use the PEG as much as you can. I didn’t have one, I was determined to keep eating, even though it was hard. You need the calories to help fight everything which is going on. I actually managed to put on 1 kg while I was there. I lost weight after treatment.

The other guys who were there, who all had PEG tubes used them and said they worked pretty well. If your husband is having trouble swallowing, use it and use the shakes etc they give you. It’s hugely important that he keeps up his nutrients!

Good luck!

Dave

Beesuit said:

Don’t bother. Use the PEG. I found it wasn’t worth fighting

Walnuts

I have a caveat. SLT will go on and on about losing ability to swallow. There are exercises to prevent that. I have some in my blog 

Thank you so much for your blog, I've read some and it's great! Thank you especially for the link to the device that helps swallowing,  I will see if my speech therapist can get me one via my GP. That would be fantastic, thanks again x

I can't swallow solids safely as I suffer silent aspiration,  it's very very very hard not being able to eat. It's a basic drive and I also used to be a fine dining chef. I find the Peg feeding does nothing to stop the food cravings sadly.

I've got exercises but no difference yet in nearly a year. I'm thoroughly fed up with it.

Hi Lonewolf

I am so sorry that you are in such a life changing situation, it must be really hard for you. The treatment for cancer although lifesaving can be harsh and can leave side effects that are sometimes hard to cope with.

I have not had the same op as you but have also had to adjust to eating issues since my 2 maxillectomies and a mandibulectomy but at least I can eat puree.

With some food that I crave but cannot eat I sometimes put it in my mouth just for the taste and then have to spit it out. Bacon and pork crackling is great that way. I also enjoy inhaling the aromas of food and then remember how it tastes.

I do live a happy and fulfilled life in spite of the eating issues but have had 3 years to adjust to the changes and hope that in time you are able to do this also.

I do hope that you have some success with the swallowing device.

Sending you my best wishes

Lyn