Surgery

1. Bless you. Just starting on the journey. I hope you stsrt feeling better soon x

Hey sorry to hear it’s tough on you now but your going through the tough the fight of your life to get beat this and this is going to make you even stronger !! Take time to relax catch up on tele chat to friends post on here we are all here for you but never regret this surgery your a soilder !! Keep on going you come this far xxx

Tough and inevitably life changing as it is, surgery offers the best chance of beating this horrible disease. Not everyone is eligible for it. If you’ve been offered the option then I would grab it with both hands. That’s what I did. Now nearly two years post-op. 

Hi Alba1. Sorry to hear you are going through a tough time at the moment. None of it is easy but my honest answer to you regarding surgery (and based on my own experience) is to do it. I had my operation October 2023 and made a good recovery. Wishing you well in whatever decision you make. Take care of yourself, Julie 

I was hoping to have surgery at The Royal Marsden in London but they told me because my tumour is 11 cm there would only be a 20% chance of it being successful, so that was a no go. 

Nice to hear from someone who has gone through it. I have some questions if you don't mind. How long where you in hospital for post surgery, were you in lots of pain? How has eating and life been since the surgery? Do you have lots of reflux or sickness

Really pleased went well for you. Did you have any complications? I'm 70 do you think that will effect my recovery. Any tips you would recommend 

Sorry to hear this must be a very difficult time for you.

Hi and to answer your questions;

1. I was in hospital for 16 days, half of them in ICU. This was due to complications. Three days after my surgery I developed a chyle leak and had to be intubated as they couldn’t manage the pain. Prior to that, I had been doing really well
2. eating and life are undeniably different. I can only manage child-sized portions and tend to snack more in between meals. Having said that, my weight is only a few pounds down on what it was before treatment started. I also haven’t regained the stamina that I had previously and tend to get out of breath more easily. I have to pace myself more now than I used to when it comes to doing jobs around the house and garden. But I continue to make the most of life and have been on several holidays since my operation ;including one which involved a 14hr flight!). I am currently in Tenerife on a 10 week escape from the worst of the winter weather back home
3. reflux is a recurring issue. Sometimes I can go for weeks without an incident  and then, when it does happen, it can knock me off my feet for a few days. There isn’t always a discernible reason for its occurrence either.

But, in spite of every difficulty that I have faced, I do not regret having had my surgery. I consider myself lucky to have been given the opportunity to have it. I am very cognisant of the fact that, without it, my chances of still being alive would have been much diminished. I am still officially “in remission” and will be until my 5th anniversary in 2029. I hope that I am one of the lucky ones to beat this disease. You will have to make your own decision regarding the surgery. All I would say is to trust the recommendations of your surgical team. When the operation was first described to me by my consultant, I was totally taken aback by the severity of what he was suggesting. When I asked him what the “Plan B” might be he was pretty blunt in telling me that this was very much my best option if I wanted to survive. I trusted his judgement. Good luck in whatever decision you make

Morning Alba1. I was 63 when I had the op. I was moderately fit and not overweight. I did try to put on weight before the operation, as I was told I would lose weight until I could begin to eat properly again. I also began to concentrate on getting fitter during the weeks before my op, which if nothing else helped to boost my mood. I would imagine that the hospital would not recommend the operation if they did not think you were fit enough and this is a good question to explore with your medical team.
I also used the Oesophageal Patient Organisation’s website (and still do) which has masses of information. 
I wish you all the best. Julie