Where's my appetite?

Hi Pauline, I’m so sorry you are struggling to eat, it does become an issue doesn’t it and I don’t think your situation has been helped by your setback and a further scan which is bound to trigger more anxiety. Have you had your MRI results yet? I can only share my experience which was similar in that nausea and vomiting continued for weeks after treatment ended on the 26th August which prevented eating. I’m not sure if you are tube feeding but in my case it turned out the Fortisips food supplements were also causing the nausea so I stopped them, stopped using the PEG despite the dietician advice and forced myself to eat. It’s been awful but I set myself times and one bit of advice I did find useful was to eat mushy cereal before getting out of bed, lots of milk and sugar, that gradually progressed from a few mouthfalls to a small bowl, 11am a poached egg, 3pm a few mouthfulls  of Heinz (it had to be Heinz everything else made me sick ) chicken soup. I’m now 3 months post treatment and have increased mouthfulls to small portions, weight stable although like you I’m 2stone plus down. Each time I had appts or my PET scan I couldn’t eat due to anxiety so maybe discuss this with your team as I was prescribed low dose Diazepam to help with the anxiety. Eating is not pleasurable but if you can build up small mouthfulls in a regular routine it will be a start. Take care Debbie x

Hi Pauline. Can you try liquid food orally? I don't mean the RIG food...that's awful and makes lots of people nauseous.....but stuff like ice cream and smoothies to start with?

Debbie grasped the nettle and stopped them so maybe try the same?

Chiron33 said:

in my case it turned out the Fortisips food supplements were also causing the nausea so I stopped them, stopped using the PEG despite the dietician advice and forced myself to eat.

Well done Debbie. They really are horrid. I dreaded my fortisips but strangely after I started eating I used them as a standby for a year and quite enjoyed the Mocha ones!

Thank you that all makes sense.  The fortisips are all I have to 'eat' right now.  I am just going to have to force myself to try something.  I had diazepan for the MRI I think it made things a lot worse and took me days to get over it.  The GP has put me on Setraline, an anti depressant, but again it made me sick so Im going to try and manage for now without anything.  There is a natural anti depressant 5-HTTP which has been suggested as an alternative.. Its such a nightmare.  I think I'll contact the dietician and just see what she says about stopping them maybe for a few days and see if it helps.  

No results yet not sure I want to know!  Do you feel any better eating?   

Thank you for your advice. I hope you're feeling better and continue to make progress.

1. Pauline  xxx

Hi Pauline, I think like a lot of us in this difficult situation eating became a tearful chore to be honest. I actually started to dread it and would be relieved when the day was over and I wouldn’t have to eat!! I started to notice that the warmth of the soup felt nice so I increased slowly to a bowl , the poached eggs became more digestible and I introduced some toast, it sounds easier when I’m writing this as it’s actually awful, really tough. Just try easy things to swallow first. Although I stopped the Fortisips I do think they provide essential calories and I only stopped them when I knew I could stick to some sort of eating regime. I’m 14 weeks post treatment and some days are better than others now. I haven’t put the weight back on but I’m not losing it now so the dieticians have signed me off. See if you can find something you can swallow like a creamy soup and just start with gritting your teeth and trying a few mouthfulls. Keep us updated on how you are. 
Big Hugs Debbie 

Hi Pauline. I got into the attitude that good was fuel snd eat to live not live to eat. Start slowly and small portions. Poached egg on well buttered toast supplemented by orally dipping ensure drinks. Thus booklet might help you 

it’s a slow process forget thus Christmas food wise you’ll stress yourself out too much so reassure. Sit at the table but don’t try to eat as you would have done previously try a trifle and eat earlier an ensure ir fortisip. Evrn try complan with full fat milk  aNext Christmas will be better  

hugs Hazel 

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

Hi Pauline.  I struggled for months with nausea and had zero appetite.  Like you I dreaded eating and was glad when the day was over.  Everything burned etc.  but…… it slowly got better over the weeks.  I was on anti sickness for weeks but I found sweet things much easier than anything else. Choc mousse with cream was nice snd lots calories. I also went mad for soaked Frosties in full fat milk. I did manage a home made smoothie with blueberries snd banana and avocado etc.  just go with what you actually fancy.  I must admit I still can get a tiny bit of nausea even now if I have to eat something I don’t want to. It is miserable I know, but it WILL get better.  
lizzie