Food issues

Hi Kenco,

What your husband is experiencing is par for the course I'm afraid. Six weeks is really early in his recovery. It was six months before my taste settled down and a good year before I could eat most of the things I had previously enjoyed, one or two I never could.

It's best to stick to the foods you know don't hurt him and gradually try the odd one. If it's painful then abandon it for a while.

How is his taste?

PS. Not having salt is pretty good for him anyway as he has to keep an eye on his blood pressure having had his neck irradiated. I don't add salt to anything now and a packet of crisps is a rare treat.

Hi! 

I find eating anything spicy or acidic still challenging as like your husband my mouth (mainly my tongue )feels as if it is on fire. However I am progressively noticing some improvement and I started being able to add a tiny bit of salt to my food.I use loads of different types of herbs to make food more interesting and tastier (parsley, rosemary, mixed herbs.etc). When I make a dish with tomatoes I add a bit of sugar. Butter , crème fraîche and cheese have also become my best friends. Even if I still can't eat everything I used to be able to, I am enjoying cooking and having meals with my friends and family again.

6 weeks is very very early stages and your husband is doing amazingly well.  His taste buds will improve, just needs to take each day at a time and try to introduce new food progressively. No need to rush. I think he needs to enjoy the food he is having and avoid anything that is causing him pain at the moment otherwise eating will become a chore. Baby steps but worth it. 

1. ️

Thank you so much for reassuring me xx

Hi there ,we don't add salt to anything or buy anything containg salt anymore ,even a plain cooked potato can cause a burning sensation in this mouth ,trail and error is the way forward ,like you say I will introduce new foods slowly ,thanks for your help x

Hi Kenco… I am now a year out after my diagnosis and 9 months post treatment. With the exception of spicy food (but can handle some now but not as hot as before) food live is pretty normal. The journey was not easy but those that know me on here ( albeit I have been a bit quiet for a while) know I have a tendency to push the boundaries a bit. In short after my treatment and loosing my taste completely I treated everything food as ground zero and a giant reset. This meant retraining my mouth, taste buds etc etc from scratch. The way I looked at it was that due to the radiotherapy half my mouth was my real age and half was that of a child starting its food journey. Some may think that a bit depressing but I my case I turned it into fun and one big experiment to try lots of new combinations. At first keep the food softer but try to build in texture as this will work the mouth harder. For example use cuts of meat that have to be cooked longer, most flatfish have softer textured flesh and are easier to handle. Do a few nice pies with puff pastry crusts as you get the soft centre with a rich gravy and the texture. For me texture is key as it forces you to chew properly and gives the mouth throat etc a good workout. ( weird I know but at first eating is a gym session and can be pretty exhausting). I often broke my meals into 2 or 3 portions  so I could warm them as they where taking rather a long time to eat. I remember kicking my Mrs out of the house on halloween ( I suggested that she went to a party and have a night off) about a month after my treatment had finished when I had decided to take on a T-Bone Steak with a mushroom sauce I had devised, green beans and potato dauphinois with a few cans of Guinness zero. It took me two hours to eat it, I could barely taste any of it and it be honest it hurt but it was still a victory and a big step in the right direction.  I also had for me my secret weapon which was rice pudding with really good quality honey added (I used local stuff from a farm down the road and Manuka when I could get it). This rice pudding would only be warm (not hot) with loads of honey mixed in. Eating that after a mouth workout really helped to sooth my mouth and throat and maybe the honey helped the healing process a little. I kept this sort of thing up for a while and worked out ways of inviting people round for dinner based on menu I had but together that I knew I could handle but looked pretty normal to them.. For me it took about 3 months to make real progress in getting some taste back which was  hard work. Raz’s mantra on here is food is fuel which is true but feeling hungry is the key..I found exercise really helped me to turn that corner. An example would be we had some friends round for supper the night before and I made one of those pies (they all loved and I could taste bugger all). The next morning I went off for my hike followed by a game of golf and came home pretty tired, sat at the kitchen table and genuinely felt hungry for the first time in ages. I had a bit of last nights pie left over, heated it up and could taste everything (wow).. ok had roast chicken later and could taste bugger all but  it goes like that. Frustrating but it is part and parcel of the process but it was a big step in the right direction. So I said at the start I am now nine months down track and food life is pretty normal (some exceptions) and would actually go as far to say more varied and diverse than it was previously. Just keep trying different combinations of fresh and dried herbs, have a good old rummage through the spice rack and try ginger, nutmeg, star anise, saffron, cinnamon, garlic, turmeric, milder peppers (chilli maybe not) also look for other vegetables with in built flavour like fennel (aniseed) and fresh cooked beetroot added sweetness to many dishes without the need for sugar and gives stuff texture… I think somewhere in one of my threads there is a twist on a bacon sandwich with quite a high calorie count you might want to give a go… The key is keep plugging away at it, it will get you and your hubby down at times but don’t give up as there will also be some good times too and there are some lovely people on here that will be there to help and encourage you. Best wishes 

Hi Kenco

Sadly what your husband is going through sounds "normal" I was a total food & spice junky before treatment. I didn't realise how much of my life was centred around food & drink so I feel your pain. I had a chicken Korma the other day which was way to spicey so now it is, rather depressingly - butter chicken curry for me - oh my days.

Montus sounds a lot like myself, try something & if it doesn't work try again in a while. The food thing is the thing that gets me down but we can beat this thing.

Good luck & hang in there

Hi Kenco

I'm in to week 4 of recovery and I am only able to eat porridge, scrambled eggs, boiled plain fish and thin chicken soup. I add soft vegetables and rice or noodles. I can only drink plain water. I'm living on this everyday but glad I can actually eat without a tube.

My mouth and throat are still sore and everything tastes disgusting. 

Think it takes quite a time looking at other posts to get back to any sort of normality. I'd just love a coffee and some cake.

Wishing him a speedy recovery 

Hi Warrior ..  Managing the pain is always the tough part. I was determined to stay away from the morphine and used two strengths good quality CBD oil under the tongue 20 minutes before eating to back up the paracetamol instead. The weaker I used for breakfast (normally readybrek and honey) and the stronger for main meals which really helped ease the pain. The rice pudding and honey was the medicinal desert and did help soothe my mouth and throat. One other thing which helped with the taste was ditching the metal knife and fork (used just for cutting things up) and after trail and error (inc wooden, various plastics etc etc) I ended up using good ceramic eating tools, basically chopsticks and a spoon. For me this seemed to stop the “bad taste” which made eating easier. For me for ages I could not really taste anything with the exception of a hint of chocolate. When eating was a particular struggle and I was feeling sorry for myself I would scour the area for a Macdonalds with a working machine and get large chocolate milkshake. Over 600 calories in one of those so nursee didn’t complain, I could gurgle away quiet happily and the coldest soothed my throat that afterwards I would often take on some other food… or maybe just more full fat homemade milkshake. 

Both you and Kenco’s hubby are in the early days and doing great.. 

Just keep plugging away at it , little and often and also remember to keep doing the mouth exercises.

hope some of the above helps.

best wishes

Hi Montus

That is for your message 

I have CBD oil and will give that a go.

I use plastic fork and spoon and this has really helped. 

I can't touch milk or any food apart from what I mentioned as it tastes so bad. It feels like everyone can have dairy except me!

I'm such a foodie and it's painful not to have my meat and pizza etc. I've lost more weight in recovery than during the treatment. I'll keep going and keep eating what I can.

I was doing my exercises religiously but have stopped in the last week. Better get my act together.

Let hope it's gets better for Kencos husband really soon, and me!

Best wishes to you

I am sending good vibes to your husband on his recovery journey! I had a similar experience post-treatment. Aloe vera juice and sticking to cool, soft foods helped ease the burn for me. You can find more options for natural food. Everyone's journey is unique, but I hope he finds some relief soon. Stay strong!