I hope it's OK that I have joined. I don't have cancer but my husband was diagnosed with oesphageal cancer in February.
His journey so far:
He had an oesophagectomy in April and started chemo in June.
It has been a really difficult time. The surgery was awful. He was in theatre for 12 hours and spent 3 weeks in hospital as his oxygen levels took a dip and he got pneumonia.
He has not tolerated the chemo well and was really unwell and lost a lot of weight. Oncologist started by reducing chemo by 20% but then had to drop another 20% so now on 60% which he seems to cope ok with. He is poorly 1st week or so after the IV chemo and hardly eats and spends a lot of time in bed so specialist nurse then tells me to put him on his overnight feed every night until he picks up with eating.
The nutricia overnight feed gives him belly ache / diarrhoea so he tries to skip it whenever he can. The dietician has now sent him supplementary drinks / smoothies. He hates milky drinks but they have now sent us powdered ones that can be mixed with water.
My hubby gets bad stomach pains and says he feels dizzy. I have also noticed his hands shaking. Asked at chemo what this may be but they weren't sure. District Nurse thought maybe a drop in sugar levels. I think I read on here it maybe something to do with dumping syndrome.
Hubby is finding it difficult to manage food. He can eat anything now but he doesn't feel like eating at times and if he eats something at breakfast and at lunch then he doesn't want anything for dinner as he fills up quickly. Will eating ever get any better?
Any advice would be really welcome.
Hi,
Some of the things you mentioned are similar to my experiences. I had my oesophagectomy in Feb 24 and completed my post-op chemo (at 75% strength) in June. I was on JEJ overnight feeds for about 6 weeks after surgery which took a lot of the stress out of trying to get enough calories orally. Gradually eating started to improve but, like your husband, mornings and early afternoons were easier. I tried to max out calories by eating a lot of high calorie foods (cheese, full fat milk & yoghurt, custard, ice cream, cakes and buns). Things do get better but it may take a while. If he’s not coping with the feeds that he is on, then ask to try another one. I found it hard to stomach the Fortisip drinks I was given but I believe there is a Fortijuice version which may be more palatable. I am now able to eat anything I want, albeit in small portions. I eat 3 meals a day with snacks in between. It’s a tough journey but I hope you’ll get to this point in due course. Good luck
Thank you for your suggestions.
I have managed to get him to eat the small chocolate puddings with custard and he eats rice pudding.
Cakes - very nice only problem is keeping me away from them
It certainly is a tough journey but I hope there is light at the end of the tunnel.
Take care.
Hi. Will eating get better? Yes undoubtedly but all in the course of time. This operation and chemotherapy drain you and no one finds it easy. Skipping the overnight feed tube nutrition does not sound a good idea to me and not helpful to rebuilding strength but we are all different. Also I felt that the key to my own recovery was increasing exercise and avoiding lying in bed no matter how tired I felt. Sometimes of course especially with belly cramps one is forced into a lie down. The lifelong routine of 3 meals a day had to be binned and my life these days is very small meals and continuous grazing. Life post op. which is over 2 years ago for me will always be different but it is good to be alive. I think Cool Blue has given you some very good nutrition ideas. I hope things go well for you both.
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