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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.

3 years post Ivor Lewis surgery

Posted by

On the 3rd of October 2016 I had my surgery, in theatre for 9 hours.  Approximately a 12 inch incision on the right side of my back and 2 ribs removed, my right lung deflated so that the surgeon could guddle about inside. A couple of incisions on my neck and several small holes in the abdomen and a jejunostomy feeding tube inserted into the intestines. Apparently I had more tubes coming out of me than Victoria station and a colostomy bag for company. Thankfully the coming out of surgery was a blur, they were having difficulty controlling my heart rate which was pounding about 220 beats a minute. They realized that the epidural wasn't working for me and quickly put me on something else to kill the pain and something to reduce the heart rate. I spent 4 days in the Hdu and 6 days in a normal ward, I do remember being very thirsty and only getting an ice cube stuck on a swab to quench the thirst. I was helped out of bed and into a chair the day after surgery and over the next few days helped to stand up and take a few steps. The tubes were removed gradually over a few days and when the tube inserted in my nose was removed it was joyous. I seemed to perk up after that and the chest drain was removed and I think I was now allowed to eat porridge. I had a chest infection and the major wound was infected so I got put on an antibiotic drip. I started to be able to eat soft foods although I didn't get a special menu. The wound and chest infection cleared, by this time I was giving myself the injection in my abdomen and setting up the feeding pump so I was discharged. It was great to get home and get on the road to recovery. Our NHS despite any faults really is marvelous and I am so grateful for it. I was 57 kilo's when I left hospital and I am now 97 kilo's! Life is different but very enjoyable, it's brought me and my wonderful wife even closer. And brought me closer to my 5 sisters and 2 brothers and my son. So for those who are just starting on this journey, be positive and never give up hope. Life is beautiful.


Posted by

Pleased to hear you're still doing well Frank  - long may it continue!!

Still appreciate all the help, advice and support you gave to me when my husband was diagnosed.

I haven't been on here in ages,  but for some reason at silly past 1am o'clock I decided to log in and have a mooch about. I saw your name at the top of the page and thought I'd say hello.


Posted by

That’s a great story Frank, and not too different to mine, except I had a 12 inch incision in my abdomen as well as the shark bite in my back. It is strange how I too have become closer to my family and friends too. Something to do with needing their support in a time of need I think.

Keep well, keep posting, good news is always welcome. I’ll be posting later this month about an anniversary of mine!

Counting the days, making every day count.


Posted by

Dear Frank, 

Thanks for sharing your story with us and offering advice; Long may you continue to do so!

I am 10 months post treatment and in remission. It's not a quick recovery, but every week my pain gets less and I'm getting stronger and putting on weight. 

There is huge amounts of hope and things to look forward to. And I echo your sentiments about the NHS. It does have it's faults but they were fantastic with me and saved my life for which I too am very grateful. 

Posted by

Bravo Frank 

Congratulations and thanks again for your great support to me and all on this site !!

Hope you celebrate in style

All the best 


Posted by

Glad to hear you’re doing so well Frank xxx

Posted by

Hi Amy, nice to hear from you and thanks. I hope you are feeling better, it takes time to heal after the loss of a loved one. I hope you are being kind to yourself, take care and kind regards Frank.