Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Oesophageal cancer

Chris1973
Posted by

Hi I’m new to this and looking for advice from anyone else who has been through similar.

i was diagnosed with stage 3 oesophageal cancer in August last year , I have had a oesophagectomy 16 weeks ago , I had lots of problems after surgery and now I can’t swallow any food apart from liquid ,it’s really getting me down , I am hopefully getting my oesophagus stretched in the next couple of weeks , is there anyone else who has been through this and does it work .

thanks in advance 

Zappaman
Posted by

Hi Chris, yes I had my gullet dilated about 6 weeks after surgery and it worked fine. I didn't have lots of problems after surgery but it is quite normal for the healing process to narrow the gullet. Do not be afraid to post any problems here, I'm sure most of us  who have been through this have a vast experience and knowledge to help you. It's been a major surgery that you have been through and it does take time to heal. As hard as it may seem try to be positive, it really does help. I don't know what problems you have had but think about the fact that you have survived major surgery and that's something to be positive about. You woke up yesterday and hopefully you will wake up today, a million people around the world won't wake up today. It does get better and it took me a while before I built up the courage to have a slice of toast. Out of all the foods I could have had a craving for, a simple slice of toast and it was heavenly, absolutely delicious. So try to be positive and you will get there. Kind regards Frank.

Chris1973
Posted by

Thanks Frank it’s nice to hear from someone else who has been through this , I’ve had so many problems after surgery and eating I think will be the key to recovery quicker (those ensure drinks are disgusting) .

thanks again Chris 

Zappaman
Posted by

Chris, I decided against having chemotherapy and radiotherapy prior to the surgery, I didn't want my immune system destroyed. I thought I would have a better chance of getting through the surgery with my immune system  as strong as possible. I was drinking juiced greens with a bit of apple to sweeten it up as I was never fond of cucumber and the like, to help to oxygenate on a cellular level. I was struggling sometimes to swallow the ensure drinks whatever was down in my gullet was like gloop and nothing could get past. My major wound was infected whilst in hospital and I had a chest infection, I got an antibiotic drip and was out after 12 days. Local nurses came in daily for a couple of weeks to change the dressing, other than that nothing to worry about. Be kind to yourself and take time to heal. Kind regards Frank.

Chris1973
Posted by

Thanks Frank , I was supposed to get chemo after the surgery but unfortunately I had a narrowing of the arteries round my heart , so ended up getting a heart bypass 2 months before the cancer surgery and it made me too weak to even consider it , the cancer surgery was bad enough ended up with kidney failure, sepsis and phenomena and in a coma for 3 weeks , glad to say I’m on the road to recovery,I just wish I could eat proper food to build up my strength.

im eating mostly soup but even they can be too thick I dilute them with milk and the blender to get them down , home made milkshakes with whatever I can put in them to fatten them up.

with the gullet stretch how long after could you eat agai ? 

Thanks 

mall the best Chris 

Zappaman
Posted by

Hi Chris, after the gullet dilation I only had to wait 24 hours to go back on to solid food. Even after the initial surgery soups and meals that were sloppy, like minced beef,  and anything made with it. Well done pasta, macaroni and cheese and you will learn what else you can manage. I do regard myself as fortunate that my road to recovery was not hindered by other problems. Can you manage to swallow fortified milk? That can help put the weight back on. I had lost about 5 stones prior to surgery and when discharged from the hospital I weighed 57 kilo's. At my last check up in June I weighed 97 kilo's, my consultant surgeon has been delighted with my weight gain. Kind regards Frank.

Chris1973
Posted by

Hi Frank ,

ive tried fortified milk , it helps but it’s just the cravings for real food that are getting to me I guess , to start with I could eat soft food , but as the healing progressed that’s when things started to stick , now I’m at the point where all my medications have to be crushed or in liquid form too and even some of the looquids are quite gloopy and stick .

i think I was just getting fed up with the not eating but in hearing from someone else like yourself who has been through it it makes it easies knowing that it may get fixed with the stretch .

thanks again Frank 

chris 

Zappaman
Posted by

Hi Chris, I think many of us here can sympathize with you about craving for real food. I was disappointed after a few weeks of the surgery and being able to eat quite well to start having difficulty swallowing. However since the gullet dilation things improved greatly, smaller amounts on each forkful and chewing well if necessary did the trick. The sooner you get it done, the better and you can enjoy eating again. I tried to explain to family and friends that we do not appreciate just how much pleasure we get from eating, but until you experience not being able to eat I don't think anyone can understand. Good luck and kind regards Frank.

Bird sung
Posted by

Hi Nice to near from you. I was discharged two mad a half month ago and very similar to your case but I had one more major surgery one month right after the esophageal cancer.

I too find it's difficult to take solid food and I was advices by my upper GI Surgeon and dietitian to take liquid food . But I have to keep trying to eat solid food as planned as I cannot forever rely on liquid food. 

Sometimes it's rather difficult as I vomit a lot if food stuck and breathing affected too. It requires a lot of patient and everyone's body is different and we follow only the experience and advise from the expert .

The most important is to make sure there is no leaking and narrowing and we have to learn to cope with our new stomach if we still have and ways to eat . Try be more positive and jot down how,when etc to eat . 

You really have to be on your own to help yourself as nobody will understand more than yourself.

Cheers!

Chris1973
Posted by

Hi Frank , finally got a date today for getting my gullet stretched Friday the 6th so only a week to go and then hopefully be able to have some proper food , hopefully it will work and will make my recovery easier and help with my state of mind.

regards 

Chris

Chris1973
Posted by

Hi bird sung , 

good to hear from you , eating or not being able to eat gets you down a bit , I have the vomiting as well when something gets stuck , it’s not good and hurts when something is stuck, but however I have a appointment today for next Friday to get my gullet stretched so I can eat , I just hope it goes ok and works 

thanks Chris 

Zappaman
Posted by

Hi Chris, good news about the appointment and I'm sure everything will be fine and you will be able to eat better soon. Just make sure that you have clear information on how long to wait until you can eat. And remember to eat small amounts about 6 times a day, avoid foods with a high sugar content and what ever you try chew well before swallowing. Kind regards Frank.

Zappaman
Posted by

Hi birdsung, if you have problems swallowing sloppy foods and solid food have you asked about the gullet dilation? I never had any vomiting problems after the surgery, I could eat small amounts of sloppy foods like Bolognese and macaroni and cheese about a week after surgery. About 4 weeks after surgery I had slight problems swallowing but it was too soon after surgery to have the gullet dilated. I had that after about 6-8 weeks and been fine since. You should ask on here about diet most of us here have real advice on diet as we have been through a lot of what you might have been going through, rather than the "Experts" you mentioned. We are giving advice from experience, not from guidance notes, I didn't think much of the information I was given about eating, certainly didn't get warned about the perils of sugary food. And it was my GP who printed me some documents on food dumping that was the best information on that. Good luck and kind regards Frank.

Bird sung
Posted by

Hi Christ,

Surprisingly yesterday I managed 3 meals smoothly even after lunch , I vomited after trying rambutans (fruit) .This time I am lucky I just vomited twice and later at the evening I vomited once after the first two bite during my dinner then later every food I chew and swallow is alright .

I even take away the balance food I cannot Finnish home and continue eating .You need to be sensitive to your ways of eating as our body,digestion ,stomach had changed .

Eat slowly, Chew carefully and relax while you are eating. Wish you recover soon.

Best of regards,

bird sung

Chris1973
Posted by

Hi Frank , had my gullet stretch done yesterday, and what a difference had my first solid food today for months , was only a egg sandwich but man it was good ! . I have to have it stretched a total of 4 times every 4 weeks but after the first one I’m so much better , so glad I can eat again 

Chris