Can't Eat / Lost Weight

Hi and welcome from me.You do not say how long it is since you finished treatment, but it does sound pretty extensive treatment.  Recovery is a slow process.  The best saying is give your recovery a year and you will have many more years of good quality life.  It is a marathon and not a sprint and there are many setbacks amongst a general move forward.  For most of us taste does come back in one form or another and so does the joy of eating.  It may be different to before but you will generally be able to do the things you love to do.  I never could sing, so I don't miss that, and you had better ask my wife about my kissing

Hello there from a fellow wife who's husband finished 30rounds of RT and 2rounds of CT 12wks ago.Just as Peter mentioned, recovery is very slow,some days better then others. My hubbies speech is coming along slowly,also it doesn't sound the same. He's is still relaying on his PEG, but he's starting to eat soft food orally. He lost about 25kg in weight and does look fragile at the mo. Hopefully this will change once he put the weight back on. With his mouth still very dry and can't produce any spit, I have to admit,I have to settle for pegs on the cheek.But since I joined this wonderful site, I have been given alot of hopeful advise/comfort. So stay strong and patient, it will get better,also it's slow. All my best wishes.Hugs. Mel x

Hi welcome from me. Wow 70 radiotherapy sessions I had 35 and 2 chemo. My blog below shows how I went through treatment and recovery tips in there might help you. 
I treated it as a marathon not a sprint recovery can take time. There’s very little I can’t eat now I’m 7 years post treatment spicy food is about all I can’t eat 

hugs Hazel 

Thanks to everyone that has responded.  I had my tongue and mouth surgery at the end of Dec. 2023.  I had right side neck dissection at the same time.  I had 35 radiation sessions between Feb. and April 2024. Then in July 2024 I had my left side of neck dissection followed by chemo and 35 more radiation sessions.   I've had 1 clear PET scan since then.  Yeah.  But still have lots of mouth/tongue pain.  I miss eating so much that I cook just to make the house smell good,  LOL

Hi Red Head. Sorry to hear that you still have a lot of mouth/tongue pain. The feeding tube must be a life saver at the moment. Can you take anything by mouth at all? Can your speech pathologist give you some advice about what to try to eat to try and start a gradual transition from the feeding tube over time with the help of some pain relief. It is easier when you are pain free. I know what you mean about cooking just to get the smell of the food. I am able to eat puree but miss eating anything with texture. I sometimes put some food in my mouth that I know I can't swallow just to get the taste. I also love smelling the aroma of the food my husband eats when we go out as it reminds me of the taste. I even go through the menus and hypothetically choose what I would like to eat from it. The things we do!!!!!!

Lyn

Hi Red head, I’m in the same boat as you I’m afraid and can’t give any advice. I finished RT 6 months ago for tongue and neck cancer and my tongue is still very uncomfortable and my neck keeps me awake at night with the lymphoma. I’m eating ok but I really don’t enjoy my food and I have no appetite at all. Still drinking 3 Fresubin daily to keep my weight up so can hopefully have my rig removed, they won’t remove it until I keep my weight without losing anymore. It’s so worrying when things are still painful as you just want to be back to normal although my consultant told me that I will never feel like I used to! Not really what you want to hear but I try to think that it’s just a new normal. On the plus side according to my BMI my weight for my height is perfect!

I wish you well for the future.

sue x

Thank you so much and well wishes to you too.

I know what you mean, the things we do.  I cook things I know I will not be able to eat but I try to eat them anyways.  Just in case this time things might be different.  I'm sill grieving what I used to have.  I had a vacation to Italy scheduled (first trip abroad) but decided to cancel it about 6 months after my surgery.  I am reluctant to travel aboard now that my speech is so messy and my dining habits have definitely changed.  This too shall pass (hopefully)!

Yes travel can be quite a challenge and I have found takes a bit of working up to. I started out going away for a weekend with my husband and chose self catering accommodation so I could manage my own meals to take the concern out of finding something I could manage on a hotel menu. I have a car fridge that I put my self prepared food in to take out with me for a day's outing.I have to carry my trusty Magicbullet food processer with me as it is quite small as my Vitamix processor would take up all of my luggage space.   I worked out a lot of the pitfalls during these weekend trips. Then managed a 3 week trip to Tasmania with my husband (I live in Australia) again with self catering accommodation. Had to think through what to eat on the plane and took my own yogurt. Bought Sustagen at the chemist when I arrived as it was too heavy to carry in my luggage. Amazingly a lot of soup on the menus in Tasmania so that helped. All this did not happen overnight and took a couple of years for me to work up to. Overseas travel definitely not on the cards as too much to think through in the eating department. Your problem solving skills get a work out but it is amazing what solutions you can come up with.

Lyn

Hi Redhead, 

I have also had 4 mouth surgery ( including 2 maxillectomies ) plus radical neck dissection and 2 lots of radiotherapy but only one lot of chemo. The last op was the second maxillectomy ( April 2024) which has now left me with no hard palate. They couldn’t do a skin flap to cover large hole- no peg this last time, so I had to learn to drink fortisips quickly without it going into sinuses as the obturators didn’t fit properly. This was certainly a fast learning curve.
I now have a better fitting obturator which is difficult to insert however it allows me to eat puréed food. I am a very determined person and not going to let this stop me doing things. So- I have just returned from a wonderful holiday in Gran Canaria. The staff were very helpful and I tried to explain to head chef what I wanted to eat each day. Most of the time this worked but occasionally language problems might mean I ended up with too much smoked salmon in my mousse or too much salt in something else. I discovered mixing yogurt in would help. You learn how to explore funny combinations of food. I also took fortisips with me as extra luggage in the cabin( covering letter and prescription as proof so no problem)

The burning sensation in the mouth is often there but difflam and regular sips of water help. My speech has gradually improved even without the obturator. It all has taken time and lots of practice. Like you I miss singing properly.

Life does get better so keep plodding on - anything is possible …