Its been 7 months since my oesophactomny. Its been a couple months since finished post chemo, few weeks ago we had news of the results of post op scan which was good news showed no cancer we were
very pleased. But still feeling very tired and still nauseus when eating any food, food is not enjoyable just eating because I have to not because I want to. Has anyone else had the same and how long before
you feel any better.
Hello Col - I felt exactly the same about food for quite some time and I am sure others will tell you the same.
My wife suggested I try a small glass of red wine and that did stimulate my appetite - I also found I preferred stronger tasting foods that I didn't like before the opp. but don't buy in bulk something you like one day because tomorrow you may hate it (that's what I found anyway).
It was probably a few months before I could eat and look forward to it and now almost three years post opp. I do get hungry and look forward to eating though it is still quite difficult to gain weight.
It's a long slow recovery you face so try to be patient - you have the biggest part over with and very good news from the hospital
Good luck
kind regards Mick
Thanks Mick can't wait to feel hungry again and enjoy food but its a long journey.
First the bad news: I was feeling slightly nauseous for about two years after my second round of chemotherapy ended. Now the good news: I am now over five years postop and the nauseous feeling does eventually pass. Stick with it and though you will obviously never be as you were before I think my quality of life is 80 to 85% of what it was before.
You are more or less right on course alongside many others! The taste buds do eventually improve by some mysterious process that probably involves the saliva glands and nerves. Keep up your mouth / dental hygiene, and keep your mouth moist and the taste should eventually return.
The nausea does not help of course. It is a bit like babies whose systems often seem to make them sick until they get trained / develop more. There is medication like domperidone that does help with nausea, but the things to watch out for are: a) is the food clearing OK from the bottom of what stomach you have (ie the pyloric sphincter). If not, the surgeon might stretch it a bit to help; b) the more of your stomach you may have had removed, the more likely it is that your system will not generate the iron / vitamin B12 it needs as this comes from the fundus, or top part of the stomach. Think about a check on your mineral / vitamin levels in case you have a bit of anaemia; c) it does take a really long time to regain stamina, and that is a frustrating period that tries all our patience. But gentle, progressive exercise and always being kind to yourself will gradually make things better. A physiotherapist may help. You probably feel 30 years older than your age, but it won't always be like that!
Thanks Alan perhaps I will get mineral/vitamin levels checked, and try to do a bit more exercise.
Hi Col, firstly having a post op scan is a bit of a bonus, I don't think many hospitals offer that and to get such a great result is fantastic.
Your poor body has been through so much, so be kind to it, I did not feel I was making real progress until about 10 months after surgery, but I knew I had to eat and sometimes it was such a chore, not feeling hungry, feeling nauseous, suddenly wanting to drink very cold Fanta at 2 am, but I am sure things will settle. Try Domperidone, it is an anti sickness drug and make sure you sit up straight when eating so that gravity takes the food as quickly as possible to the stomach, only eat small amounts, but eat often, you need the calories and of course the vitamins and take a look at this link gloshospitals.nhs.uk/ShareP.... It contains some excellent info on a drink you can make at home which helps keep your electrolytes up and healthy.
The link Dashwood provided above would not work for me, but I found this one which hopefully may be the one indented for others to read.:
gloshospitals.nhs.uk/ShareP...
It may need to be Copied & Pasted into your web browser.
Good luck
Hi Col
The symptoms you are feeling have been experienced by just about all of us. They come they go but the overall trend is improvement with time.But I still get twinges 23 years post -op !
It is the not-trivial price we pay for still being alive.
The best advice is probably to stop beating yourself up with 'why' questioning and just get on with and enjoy whatever you feel able to do,eat etc from day to day.Gradually you will work out a regime that suits you and is effective most of the time.
Wow! Fantastic, gives us all encouragement, thank you
Hi L
Thanks for the feedback. I am now at 28 years post-op and would still say the same - the evolution continues, some good, some not so. Just remember LIFE IS GREAT.
X
Thanks 23 years that's very good news and just what we want to hear.
6 months post op. Which was A precautionary procedure and fortunately no sign of cancer, so no chemo necessary. Other than that I was experiencing exactly the same symptoms as yourself, however, my appetite eventually returned and I am feeling just a little better as each week passes. Although I still feel nauseous after eating, and I struggle to gain weight. In addition, I get very short of breath. My main problem is scaring which is restricting the passage of food , I have had three stretches with only partial success and will probably need a stent fitted.
Remember, Every case is different, I am fortunate in that I have not had much pain, but lots of discomfort.
Hope this is a help, please feel free to contact me (mike.corkhill@manx.net) if you would like to compare symptoms...!
Take care, & good luck to all
Mike
Thanks for you reply Mike my post op scan was because I was still feeling sick to rule anything else out. So glad you didn't have to have any post op chemo. Lost about 3 stone in all but a little back on and keeping stable making myself eat even though not feeling like it. Good luck to you for the future might get in touch to compare.
Hi Col21 -
I'm 3.5 months post-surgery and still feel constant nausea, have a total lack of appetite, and suffer from altered sense of taste. So far, I have lost 7 stone, and am trying to eat despite the drawbacks. Fortunately, I have been prescribed medical marijuana for nausea and appetite (I'm Canadian), and have found that this is a great help on both fronts. Unfortunately, my 3 months post-surgery CT scan showed an aggressive recurrence of the cancer in the lymph nodes adjacent to the tumour site. I will be starting palliative chemo today, in the hope that it buys me a few more months.
Best wishes to you and to everyone on this board and sincere hope for continuing favourable outcomes!
cheers, Rob
Hi Rob Thanks for your story on how you coped with your nausea and appetite. Sorry to hear of your
devastating news. I will be thinking of you in the coming months.
You Bet.., I guess most of us feel the same, I am 7 months post op, & feel exactly the same. However everyone assures me this will pass "in time" So glad to hear about your good news, long may this continue.. Take care....Mike
Hi there i am 15 months post op and did have chemo after op to. I thought i would never get over the nauseous feeling too. I would eat then dash to loo because i was heaving. Try eating Small and often even if it is crackers/cheese crisps. I never feel hungry but get light headed or low energy symptoms when i need food. My appetite has increased but not to the old levels ,a child's portion is about the amount. You think you will never enjoy food again ,but although i cant eat everything (due to dumping )I do get fancies for things. Your weight should even out at a new leval. I lost 3 stone.
Some of it i think is physiological due to the op and being scared of eating or perhaps like me it is foods i was eating on chemo i couldn't face. Back eating those foods now.
Good news anyway with the scan.
Debbie
My husband is 4 months post op and everyone says , as i’m they do to you, that it’s still early days and will improve. Pleased to hear you got the all clear. My husband did too!
No followup 18 months post-op
Ivor Lewis post op 
Dad refused his post op chemo
