No appetite

Hi June. I am the same as you tooth wise.I only have teeth in my left lower jaw, no upper jaw and no teeth on my right lower jaw after several jaw surgeries which makes chewing extra difficult. Hence the need for minced moist/ pureed food. It takes a while to get used to the new normal but we get there. I do miss roasts, sandwiches, bacon and eggs, fish and chips and so much more. No point moaning about it  though as they say 'it is what it is'.

Lyn

To be honest I’m really struggling with food and drink. I was hospitalised because I couldn’t eat or drink because of the radiation treatment and mucositis. I spend my whole day and a lot of the night spitting out the thick green or clear mucus. If I stop it fills my mouth so quickly I’m choking or throwing up. I’ve done all the stuff they told me to but it’s not making any difference. As a consequence food and drinking has been nearly impossible to swallow. These days I’m not eating because I have an appetite but because I don’t want to end up in the hands of the dietitian who through sugar and cream make me a diabetic in a bid to add the weight I’ve lost without a nutritional diet suitable for a cancer patient. I find that if I drink a mouth of hot tea then shove in and swallow whatever food I’m eating I can eat something.  It’s been reduced to broccoli cauliflower occasionally cabbage, sometimes a little plain pasta but only the larger types, I managed weetabix with milk, a small piece of toast or a cracker with marmite and banana (don’t ask but I can’t taste anything I don’t like marmite) to get out of hospital. I’ve been so constipated that I haven’t passed a stool in 5 weeks even though I’m eating and drinking again albeit in small amounts. This week I tried kiwi, prunes, stewed apple and pear, basically anything that will help my bowels but it’s agony. Contact ulcers which makes the mucus worse. I’d love just normal food to sit and eat a meal with my family so all of this is really starting to get to me the hot tea does help to swallow food that I need to eat but I can’t say it’s because of appetite. 

I was in the same boat as you up to 2 months of the treatment with the thick mucus and even 10 months past RT I still suffer badly with mucus nightly which keeps me awake. Luckily these days it’s not so thick and I can spit it out rather than have to remove with a tissue. It’s awful isn’t it? I take it you’re possibly a couple of months from treatment? Haven’t you been given Laxido for constipation? I had a prescription along with morphine and ibroprofen which I needed for about 6 months until the pain died down. Sue x

Hello Sue

I sympathise completely.  I'm 8 months post RT and am trying desperately hard to eat. Each time I make some sort of progress I am then knocked back again,  either with ulcers, nausea and I have a dreadful back of the throat, which doesn't seem to want to improve. I'm not sure how much more I can carry on like this, but try to live in hope that things will improve. So very depressing.

Angela

It is a long old slog, and it does tend to get us down, but things do improve eventually, I'm 2 years plus out of chemoradiotherapy, eating and enjoying food, been on foreign holidays, cycling and gardening. 

Your GP can arrange counselling for low mood, tell your GP and oncology about any issues you have, do not just put up with them.

There will be a new normal for most, it is part of the cancer deal unfortunately.

Hi Angela that’s why I post on this forum because everyone gives such good tips and advice and to know that others are on the same journey. I’m feeling happier since having my rig removed after 8 long months. I was told to cut down on my Fresubin although I still don’t have any appetite so I still drink 2 a day to keep my weight stable x

I’m at a similar stage to your partner 3 1/2 month post the end of treatment. I rarely feel so hungry that I have to eat! I try very hard to eat 3 main meals and snack but I’m finding sweet foods generally unpleasant and salty foods irritate my mouth. Bland food is generally best for me even though I crave Indian veggie food & fruits but spices (inc black pepper grrh) and acidic foods are not worth the sting to my damaged tissues and resultant hours of mucus production!  I can detect gradual changes to some tastes so there’s always hope that this is improving bit by bit. Whilst I’m still a healthy BMI I’m just not going to sweat it! 

You do right, Twiggle and I'm going to cut it out too.  We don't have scales at home, but he's weighed every few weeks at clinic and they're not fussing - yet - so I'll see how it goes.

Anyway, as I type, he's eating a smoked bacon sarnie!  I took off the fat and that went down my neck, as the best bit mustn't be wasted.  Ahem!  Fortunately, he's never suffered with a sore mouth or throat, but the mucous issue will be for life, hence nubulising at least four times a day.

But hey, you sound like you're doing really well, so I hope the improvements keep coming.

Best of luck xxx

Thanks Gill!

Glad to hear he enjoyed his lean bacon sarnie and you got the best bit ;-)

All the very best to you both! Sx

Thank you so much for your words of encouragement.  My daughter gets married in less than 2 week's time and I desperately want to feel better for this. I shall be beyond devastated if I miss this.

Thank you so much once again.

Angela