Help please - 6 weeks post surgery

Neil1971

Apologies for any terms used that make no sense as I realise this is pimarily a US occupied board and I'm based in the UK.

My wife (50) was diagnosed in May last year, we have had 4 rounds of chemo and an esophagectomy performed on 5th December 22, investigation of the tumor and the 40 lymph nodes removed are all positive (only 1 cancerous), the the post op life is frightening. We have gone through 10 days of debilitating nausea, come out the other side to an almost constant cough, up retching over the toilet 3/4 times a day. She takes Lansoprazole, Acidex (Gaviscon) and also Ondansetron when needed. She is eating next to nothing (still overnight tube fed) after having a few problems with quick dumping, I feel she may be scared to eat food despite the fact that some have been tollerated very well.

We are both new to this and have probably underestimated the impact and difficulties we will face, but would like justa little advice as I know we are only just out of surgery, is all this normal so far, even though normal is going to be specific to the person

paul61

Hi Neil,

It sounds like your wife's experience post surgery is similar to mine after surgery. Our surgeons have a tendency to understate the difficulty of the recovery process. I had nausea, and cough. I did not have the retching but I did have "dumping syndrome" (diarrhea) for about a month after surgery. My doctor gave me cough syrup with codeine for the cough and it resolved in about six weeks. If your wife's nausea occurs particularly in the morning after over night tube feeds you may consider turning down the feed speed of her pump as a speed too high can sometimes cause nausea. It took me about two months to start to eat enough by mouth to stop using my "j-tube". She needs to start with very small, soft meals several times a day. Scrambled eggs, cream of wheat, apple sauce, etc. Beware of foods high in sugar content and liquid food supplements like Boost as they will cause "dumping syndrome".

This forum does not get a lot of activity but I would suggest you post your request for advice on the "Smart Patients" web site at https://www.smartpatients.com/ in the esophageal cancer section and you will find many of us who have been through what your wife is going through. We also have a bi-weekly Zoom call you can join.

We have people from all over the world who join this call. Eastern Standard Time is 5 hours behind London.

Things will get better but it does take some time.

Wishing your wife a quick recovery,

Best Regards,

Paul A.

amikins21

Hi Neil, my husband just reached his 1 year esophagectomy anniversary. It's been a rough rode. He didn't get the j tube removed until about 8 months after the surgery and they had to do 2 egds to open up the new esophagus as it restricted twice. He is still having trouble eating and has a hard time keeping anything down. I hope your wife fares better than he has and I dont think the doctors due prepare you enough for the aftermath.

Just remember to keep the meals small and soft until she can keep things down. Prayers for you both.