Good luck - it is a very long hard road but should be worth it.  Keep strong.

Wow, 

I swear us oesophageal club people must be rabbits!!!
There are more and increasing by the day, hour even!
welcome Corrinesue1.

I really really didn't realise how 'common' we are until my husband ,aged56, diagnosed last summer out of the blue. You never hear much about OC and I thought it was quite rare, clearly NOT(:

You are out the other side too then.  We have just finished 2 weeks ago. 
Now (as you can probably see) I am obsessed with it coming back, I want to know all the signs and symptoms, wether he will be scanned, scoped etc etc. Aaarrrrgggg (:

Also another query for the board ( oh my I am seriously buzzing!) - what dose of omeprazole are y'all on. He's on 40mgs, my mum is a higher dose than that about 80mgs and she is nowhere near his level of 'illness'- she has 'silent reflux'

All ( in depth) info would be helpful.

thanx

Hilts

Hi Hilts 

if you remember the results of your pathology were the same or similiar to mine as in the cancer has been destroyed then there would be no point in any interim scans or tests until the post operative healing process has run its course , on the omopresol i am on 20mg once a day but i am also on the ad aspirin trial for 5 years , take it easy

regards

Douglas

Thanx Doug.

I am seriously nutty today. Mad as a bag of wasps (:

I know all the 'rational' info and data, but of course I am having a non rational day, so won't belive anything I'm told LOL.

It will pass no doubt, but all the stress of last 9 months washing through.

take care

Hi all,

All this chat is helpful. Hilts I can get where you are coming from. I struggle with the uncertainty of it all. I,from experience, know nothing in life is certain but OC is not straightforward! My husband is very much on a 'need to know' basis which I think is right for him but I struggle and have 'googled' which can be terrifying so trying hard to stop this! You guys are so helpful. Doug thanks for all your advice as our 'mascot'. 
 

I have a question about questions! We get to 'meet the surgeon' on Thursday 15th April. We have no idea what type of surgery will be offered but GI nurse implied it's likely to be open surgery. Are there any specific questions that anyone feels we should ask? 

I hope you are continuing to recover RayB and you don't mind me joining in your post.

Kindest regards,

Mandy (aka Milly58)

Hi Hilts,

Hi Hilts,
 

Thanks for your reply and info. I wondered if you asked the surgeon any particular questions that aren't obvious - especially you being a ex nurse and all that!

I'm on the fattening the hubby regime! I love baking! The problem is I don't need to eat it! Also he is following an active recovery programme via Zoom through NHS. We are increasing our walks. Has anyone taken part in the Inspiratory Muscle Training (IMT) before surgery? 
 

Many thanks.

Mandy 

Hi Milly58, 

Do you know, we only asked the surgeon one question really....

' Can you get rid of it' ! LOL I genuinely think that was all we asked. It this curative or palliative?
He didn't really want to know anything else, and tbh nor did I.

We knew it was major surgery, but we didn't really need to know a lot, other than again, get rid of it.

I suppose we felt 'what choice do we have', just do whatever, again to get rid of it LOL, seems to be my favourite line tonight.

Yep, he did the inspiratory training. The gadget that you inhale with, increasing resistance. Did that about 3 times a day, working up to a 7. He was semi fit anyway, so he took to increasing his stamina. One of the best, free and probably most difficult was to walk up and down the stairs for 10 mins twice a day. Sounds easy, but after 1 minute I was a jibbering wreck (:, needing cake, but he cracked on and even got up to 15 mins- trust me it is a killer (:

Looking back I think it did make a huge difference, I can't say how exactly, but he was moving pretty well post op. 
Fatten him up - absolutely.  Mine had some food clogging , that put him off his food a bit, but, Once mine had his 2 nd pre op chemo, my oh my, there was no stopping him, total glutton.  Most of his weight loss has come after surgery, more so with the post op chemo nausea poor appetite. All husband and fellow travellers left hospital with something called a jejunostomy feeding tube. Goes into the gut and for 2 weeks post op he had 'delicious' vanilla feeds overnight. It keeps the calories going in. He hated that. They decided to stop overnight feeds after 2 weeks, but leave the tube in until after chemo finished. That came in very handy, as when appetite or fluids were really off, just shoved a pile of water and feed into that. He has lost about a stone in total most of it since the op, but he is now starting to put on again.

The tube was 'self removed' about 4 weeks ago. All the stitches had broken and he 'forgot ' to mention it, so it just slipped out. LOL.

He is just really starting to enjoy food again now.

we have decided in celebration and in 'f' it' mood to get ourselves a couple of tattoos.........never had one before, nor him, but after coming through this, why the heck not (: (:

Hi Hilts,

Thanks very much for this! The stairs is definitely something he could do. We both normally go to the gym 3 times a week (swimming and gym) but obviously this hasn't been open very much at all since last March and we won't risk going now as his op is scheduled for 4th May (not a Star Wars fan but May the fourth be with him!) He has his 2nd jab tomorrow so that's good.

Your husband is doing so well and you too! Defo go for a tattoo to celebrate and dance on the table at the first opportunity! 

Hi All

How is everyone ?

Well after another week long stint in hospital due to an infection I was back on track, then the 2nd vaccine, last Thurs knocked me back again! Who said this journey was a rollercoaster, was it you Hilts ?

Anyhow today was results day!!!!! Surgeon knows im his star pupil, so was very positive and even excited to tell me that the results back from Pathology were even better than he had expected.He was also impressed at my weight gain, back to pre op weight or as I call it my fighting weight lol. It was good to hear there is no spread including the piece of lung they took as it looked 'dodgy'

So now just the 2nd round of chemo (FLOT) to look forward to. Still have this horrendous cough which made me vomit (first time since op) Fri night. I made the decision to leave feeding bag off for that night and was more settled. Spoke to the dietician who was happy for me to do every other night from now on, playing it by ear for now, but best nights sleep ive had.

Next appointment 3 months.

So what do you all think?? Its took all day for it to sink in,weird feeling getting good news ; )