15 weeks post treatment but still got head pain?

If he can drink Fortisips, he may be able to manage very soft food.  I'm new here - my husband finished 7wks of RT with two sessions of chemo thrown in on Friday  The last week or so of RT was difficult, but he has continued to have breakfast, lunch and dinner.  Breakfast is porridge (Quaker golden syrup packets), lunch is bland soup taken to almost a puree with a hand blender and dinner is currently lightly, not quite set, scrambled eggs.  Hoping to move back to poached cod (or oven baked wrapped in foil with milk) and mashed avocado soon.  He’s having a Fortisip after eating the “meal” to take his calories to the level they should be.  It’s tough and takes him up to half an hour for each cooked/heated meal before the Fortisip, so it is quite a task! 

I’m going to reintroduce the foods in reverse order as he improves and when he's ready; so fish pie (sweet potato mash), yogurts, banana, that kind of thing.  Husband has a PEG, but hasn't used it for food, just one medication (Oxycodone) which was too sharp in the mouth and had him hopping, but I don't think he will be on it for long.

If your husband could just try a small mouthful and see how it goes.  Persist with trying to find the source of the pain and what can be done.  How long it it since treatment finished?

Hi Snow white and welcome. I am four years clear of base of tongue cancer. At 12 weeks I was still on morphine but I was eating soft foods and wonderfully I managed a very rare fillet steak. The things to try are poached eggs, tinned peaches, Custards and ice cream, crumpets and tea cakes liberally buttered, soup but not tomato, pasta and noodles. Scrambled eggs are softer if cooked with philly cheese and Ready Brek is better than porridge oats to start with. If he wants to try meat the best is slow cooked lamb with plenty of gravy. These are all a good start. 
I must say I had a nasogastric tube for 8 weeks and it gave my throat a really good rest from food while it was in such a mess. I’m sure that helped. 
If your husband isn’t trying solid food is he at least doing his swallowing exercises? 
As for taste mine was all over the place for six months. Most of my improvement came about in the first year but even now I still get little improvements. I can eat mostly anything. 
It’s a slow plod. But he will get there. 
Best wishes. 

PS. What does his oncologist say about the pain? 

I got him Ready Brek - it's in the cupboard, but he remembers the advert "central heating for kids", so I think he's being a bit macho.  Still, if he wants to continue, who am I to suggest otherwise?!  The other thing is, I don't watch him eat.  He prefers breakfast on his own and for other meals, he starts on his before I join him,  I think that way he doesn't feel pressurised.  Which is fine with me - whatever works for him.

Hi Snow White. As Dani  has said  his he doing his swallow exercises? I did mine religiously snd even at 4.5 years still  do albeit subconsciously now they are part of routine. His throat will be sure if he’s been trying to eat and it’s a struggle. To aid recovery I was  on 2000 calories a day and 2-3 litres of water. I was ng tube fed for 3 weeks before and 3 weeks after. I never lost taste but was the other way I had and to a certain extent accentuated taste. For me the mantra food is fuel and eat to live not live to eat gif me through. Poached eggs on well buttered toast with mashed avocado is a good place ti start. As hard as it may seem toast is easier than bread. The grilling alters the texture. Gravy and sauces become the normal bland nursey type food. Plus 6 smaller portions a day easier than 3 meals. Biscuits dipped in coffee or tea I wasn’t a dunker but now am. Supplement the fortisips until you find a balance fir him. Home made smoothies.  with peanut butter extra calories with double cream where you can. 
this link  may help 

www.yumpu.com/.../cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

Hazel x

Thank you Aotearoa. It’s not so much the softness of the food as he tells me his mouth is no longer sore, but he just finds everything difficult to swallow due to the dryness, and lots of food tastes very salty.  He will eat porridge and soft weetabix, but some of your other suggestions sound nice and I will give them a try. I need to try and get some vegetables inside him. I was just curious to know if things improve naturally or is it only through perseverance with food. 

Hi Beesuit, the soft lamb sounds nice. I think it has to be trial and error doesn’t it. He doesn’t have any swallow problems, but he does have some breathing issues when he lies down sometimes. He has got some fluid a lymphoedema around the neck. The mucus is also back. It cleared for a short while but is now back, and I think this also affects eating, as food sometimes ‘pings’ back! 

He has had this pain throughout his treatment and his oncologist says it is a mystery. He was on lots of opioids at one point, but has weaned off these and now only on paracetamol four times a day. He doesn’t want to go back on the morphine as he doesn’t like how it makes him feel. We had hoped the treatment would destroy the cancer and relieve the pain, but whilst it’s not as intense it is still there. We just wondered if others had experienced anything similar and had it eventually gone? 

Thank you Hazel, the Sallie is fine. It is more about taste and texture. There are some useful suggestions to try. He has lived on the Fortisips along with warm milk and dunked chocolate biscuits. I’ve talked about food is fuel, and whilst he acknowledges this, he struggles to apply it. 

Not Sallie lol. Swallow 

Hi Snow white

Welcome to the forum, you will get good tips here.

 One thing I find warming banana in micro, then mashed with a fork to a puree and stirred into fortisips works well for me, adding extra milk if needed. Ready break I find good too, I just stir  some in my fortisip just going with what is comfortable for what texture and swallow is best for me. Things like warmed milk and hazelnut spread good (as I don't have a nut allergy) to gain extra calories added to fortisip too. It is just trying different things. Soups are good, there are prescription ones, even just getting some cuppa soups and adding say butter or cream as something different I find good. Any bits I know I cannot tolerate I sieve out with a  tea strainer before adding any butter or cream to keep things suitable for my swallow. The prescription soup I sometimes add a small amount of chosen cooked frozen veg  and blend together. It can take time to gain confidence to start going to other foods little by little we get there.  Mashing small amounts of soft foods helps as it is not so overwhelming.

You are doing brilliantly  as a support to your husband.

Best wishes 

Nicky