Still not much taste

Hello Markmac , I’m Nige, coincidentally I finished my treatment on the same day as your hubby, the 10th January.    I can fully appreciate the problems with the food and not eating, or more so not wanting to eat - it’s like chewing cotton wool.  At the same time I had/have mouth ulcers on the soft pallet and oral thrush - now that’s not nice.   Very very similar, about the eggs and broccoli chicken etc. I ended up taking the protein drinks and working my way from there.    I have lost the best part of 3 1/2 stones - but with the help of my amazing wife, I’m managing to turn the corner a little by trying variations on what I can eat, so to come away from protein drinks.    I manage porridge with manuka honey in the mornings - I have boiled eggs, or omelette, trying different ingredients and see what works.    How’s your fellas’ swallowing, I have problem there so I have loads of slightly flavoured water, and milk full fat as it helps the weight.   I try and have something during the morning, even if it’s a complan meal - the same in the afternoon-   This isn’t easy by any means, but the struggle is worth it.!  I have chicken or beef burger with different veg, varied and also done a tad different sometimes like a bubble and squeak sometimes individually and I try the different mashed potato or the inners of baked potato. .  Ellise has tried the inners of pies as pastry can be too much for my dry mouth - hence loads of drinks available - Even trying deserts such as cream with strawberries as an Eton mess or banana and custard -  the trick I managed or should I say ellise has managed to use is try little bits but oftan and don’t be too upset if things don’t work out.         I have had little changes in taste and being able to taste but not a lot.   My other fall back is to try and make ellise feel guilty as she noshes away in front of me - we make a joke of it but it gives that bit of determination

Don’t give up , you’ll get there .

what is your husbands cancer ? Mine is tongue/throat and lymph nodes.   Still a way for me to go, having had further biopsies.

on here you’ll find some great inspiration from some amazing folk - you’ll get great ideas too.

smuthing o can help you with even if it’s letting off frustrations, lease just ask.

Sending you strength and help hugs  

Nige

Ty for the advice.  He had head and neck ssc oropharynx stage 1 hpv pos

bless you I pray each day gets better for you.  

Hi Markmac. This is a frustrating time when taste is still recovering and everything can taste strange, awful or no taste. I tried lots of different things that I had never tried before waiting with hope that I would taste it as it should taste. Calories are important at this stage to keep weight up to  help your body to recover so a few 'unhealthy' foods are O.K. It is hard to stop losing weight for some of us but it is so important to keep working at it. Small snacks rather than trying to eat 3 big meals are much easier to manage. Eat everything full fat at this stage to increase the calories. I still have 3 supplement drinks a day to keep the calories up. I found the taste of citrus worked best for me but sweet things are still rather muted. Taste does return either fully or less so for some of us but you do get there. 

Lyn

Healthy foods may be a luxury for a while, I was told not to worry about what I was eating, within reason, by my CSN/dietitian as long as I was keeping my weight stable, donuts, chocolate biscuits, cream cakes were all on the menu for some time, dentistry understood, 2 years post treatment and I can now eat, and enjoy, most foods.

Hi there,

I really empathize with what you're going through. It’s been almost a year since my treatment finished, and I still find it challenging. I can hardly taste anything at all, and anything spicy, including pepper, is unbearable for me. Most days, I stick to eating an omelette, and I'm okay with most vegetables. However, bread is difficult for me to chew or swallow, and pastries and cakes are nearly impossible.

Every morning, I have a homemade smoothie with banana, pear or apple, kiwi, and avocado every few days. I mix in soy, almond, or oat milk with a variety of seeds like chia, hemp, and flax, along with collagen and Greek yogurt. This gives me between 400-600 calories, which helps me maintain my weight. My dietitian prescribed Aymes drinks, which my GP now supplies, and I take two per day with full-fat milk. Each drink provides about 550 calories, including the milk. I've lost 4 stone, but I really don’t want to lose any more.

Eating has become hard work, but I keep trying small amounts of different foods. I saw my head and neck specialist today for my six-weekly check-up with the camera up my nose, and everything looks good so far. I’m now being moved to eight-weekly appointments, which feels like a small step forward.

My biggest challenges are dry mouth, reduced mouth opening, and swallowing. I believe it’s improving, even if it’s very slow. My consultant mentioned today that he’s seen people improve over as long as 2.5 years, which gives me hope.

I wish you both good progress on your journey. It does get easier, or maybe we just learn to adapt to it. Take care!