Glad to hear your wife is getting the nutrition she needs now. My sons tumour almost blocked his oesophagus but luckily he somehow managed to eat up to the chemo and then it shrank anyway. Hopefully your wife will get chemo soon & be able to eat again.

Hi Karen just thought I would let you know that I got the all clear and currently after a CT scan I am cancer free. Unfortunately eating is a chore now which I hate and I have lost over 4 1/2 stone. However I have stopped looking at all esophageal cancer groups on social media and decided to just eat smaller portions but food that I can stand rather than constantly looking for high protein and calories. Being ruled by food can quite frankly drive you bonkers. Also everyone says how amazing the all clear is however for most of us it’s just the start of a very long journey. I hope all is well with your son and you are finding your own way through this process. xx

That's just fantastic Marc! When you think back to last winter when you first posted on here and now being all clear. Did you vocal chords recover? I recall you saying your voice was a bit different after the op. Did you manage all 4 post op chemo sessions? Deans having his 2nd post op chemo soon. He's doing alright thanks, same as you regarding eating, its a chore for him.

He's got bad dumping syndrome at times and the surgical join has felt tight at times but ok again now - I think its due to the healing process. He's lost about 4 stone since diagnosis but luckily he was overweight and is still around 16 stone whish is ok. He gets low quite often (as I'm sure is the case for everyone in this situation) as he says he's had enough of living and breathing 'cancer' & talking about it all.

I think I do his head in trying to advise him about being active & what to try eating, and I buy him supplements etc!

So eating is not good? I know you know this but it supposedly gets better as your body adapts - hoping that will be the case for you.

I don't blame you coming off the groups on social media - you need your actual life back at some point don't you & it can take over. I look at them every day, just for hope & the positive stories of all the people who had the op 10, 15,  20 odd years ago really. 

Well, I think I spotted you on FB as may have been in the same FB group!

You take good care of yourself Marc.x

Hi my voice is still rather croaky and I’m due to have tephlon injected into my vocal cords. This should ease them and literally stop them from sticking. My tube is being widened next month so I can swallow a bit better and then they can leave me alone

Thats good then, they can do something about it. Dean may need a stretch at some point as some foods he can't swallow comfortably so he's avoiding them. Roll on the day they leave you alone!

Hi, it’s Alex. Just an update on my wife. Since hospital she has been relying on a nasogastric tube for all hydration, nutrition and medication as she can’t swallow anything.

initially she was having to bring up phlegm overnight etc which was quite dramatic and stressful.

two sessions into chemotherapy (FLOT) the coughing up of phlegm has stopped which suggests the tumour had shrunk enough to let the phlegm pass. 

She is still spitting out all saliva though as is afraid to try and swallow. She says it feels uncomfortable to try. 

She has two more sessions and then a scan to look at surgery. The surgeon hasn’t been able look into her stomach due to the blockage. The tumour is at the junction.

Do any in the group here have any advice about swallowing with a nasogastric tube?

Should I be encouraging her to try swallowing her saliva?

Thanks for your reply. I’m trying to push her a little to try, but it’s hard to see her so anxious and scared. We have a meeting with the surgeon next week so hopefully he will offer her some reassurance

Hi. I was terrified of everything to do with the way swallowing felt and fear of somehow making the cancer worse. We lose all control of our lives and feel that the cancer has invaded us. We want to fight it but at the same time there is a feeling of not wanting to agitate it. It’s easy to let the fear take over and make us submit to it all. It’s ok to get angry even if that is not in our nature. The steroids that accompany the chemotherapy make us emotional wrecks. Sometimes not eating or refusing to swallow is our way of being back in control.  It may seem irrational but when we are encouraged to do something even if it is for our own good we use the fear to rebel against everyone. I often felt that no one knew how I felt and I was very alone. I had my operation in June and after six months I am only just starting to feel like eating again. I have become vegetarian and it works for me. It means that I can eat loads of new things instead of missing the food that I used to enjoy. I am now back in control and it is such a weight  off my shoulders. It’s a new life yes and I didn’t ask for it but I am making sure I have away in how I live it. Every little pain and discomfort worries us but gradually we can learn to trust that the treatment can work however nasty and hateful it is. Good luck to you as well and don’t forget about yourself. Things do get better even if it is in small stages.