Hi I am having the same procedure on Wednesday I have found it doesn't matter what anybody says the fear is constantly with you ,I am the same ,I don't switch off at night neither.I think my fear is to find out what stage i am at.Hope you find something to help you .

Its all constant fear. I know its not happening to me, but my son, but its constant fear as to what theyre going to say. My son will be told the stage soon as well but hasn't got appointment through yet. Keep googling what I know so far about his tumour size and no spread etc to try and predict - it's driving me mad!

Hi Karen

Oh yep mood swings especially from steroids not fun to be on receiving end and horrible for our loved ones going through it.

A heads up the cancer and the chemo can cause low iron /anaemia which can add to the fatigue .

Hubby having to have blood transfusions to bring it back up so bare in mind and keep checking blood results.

Obviously not being able to eat a good diet doesnt help either.

Fear of the operation is understandable its not a small thing to undergo. Its not an option for hubby so cant say more than that.

Re looking back 

We have been on this path for over a year you quickly become all about the cancer and adapt to things but 

I see we are still dealing with "the new" every day

Sometimes it wears you out and you really dont "get it right" for your

Loved one but we are doing our best and we are all human.

..ultimately it really is one day at a time 

Id say 

Do stuff to keep you a float cos its a long road.so you dont lose yourself and also gives you the energy to be there.

I take my hat off to anyone enduring cancer treatments they are all awful grueling and traumatic. 

Strength to everyone

RB

Hi all. 
Hope everyone is as well as they can be. 
I can’t remember when I last posted on here , I’m assuming it was before the operation. 
im out after 11 nights in hospital im told I recovered extremely well. I won’t go into any gory details unless asked.  I’ve got a pipe for evening feeding ( 15 hrs drip fed with my own portable stand )  and I can eat what is described as sloppy food.

Shortneass of breath is a bit of a *** but I think that part of that is psychological. 
Once I’ve recovered enough it’s back to the chemo for another 2 months. 
typically my body hair has just started to regrow

Hi Mouser good to hear from you :⁠-⁠)

How is it being home ?

Sending best wishes

RB

It’s great to be out as it’s another box ticked off on the recovery road. 
I’ve had to get a book so I can write down what tablets I’ve had and when. 
Have to crush them and dissolve in water before drinking them down. 
Had my top off in the garden today thinking that the sun will help heal the scars and where the lung and abdominal drains where. 
kept family away while I was in there and now they’ve all been round to visit which was lovely. 
can’t beat sleeping in your own bed even if it is only 2 hours at a time x

Hi Mouser 

The weather is being kind here too.

High factor suncream ....and moisturise your scars will help.

Glad you got to see your family and deffo own bed and home cant be beaten.

Re medications...maybe some could be liquid form worth asking gp if they are long term ones.

Hope your sleep settles down as you get into your home routine

Very best wishes

RB

It’s so very good to hear that you are home and able to enjoy the weather a little. I have used you as a sort of barometer or benchmark as I will get my ct results on Thursday from my oncologist and find out when the op is as it’s been 3 weeks since my last chemo. I’m bloody terrified of the operation but hearing that you are doing ok is great and gives me a little peace of mind. 

Thanks Rhubarbdragon I’ve a few that are liquid. 
I can actually crush them and use a syringe to feed them down the feed tube. 
Boxbrain, yes, I was bricking it myself but once you get a date you end up just wanting to get it over with. You just turn up and let the experts crack on. They know what they are doing.

its a short day for us as we know nothing about it  

we go to sleep and wake up a second later 

it is an awful long time for partners and family 

Mine was 8 Weeks after last chemo. If that helps 

Well done! Glad to hear you are doing well and you've got the worst bit out of the way!

Hi just thought I would check in and see how you’re doing. I got a date for the operation which will be on the 2nd June. Not looking forward to it but it’s another step forward I suppose. 

Hi. Good you got a date. It must be a daunting prospect but at the same time knowing any remnants of it will be gone.

Dean just had his 2nd chemo yesterday after a 5 week gap between that and his 1st one due to low platelets. Did you get a kind of burning throat as a side effect from chemo? How do you feel after your 4 chemo sessions now - eating better? have you been advised to do anything specific re fitness ready for the op?

Hi. Good you got a date. It must be a daunting prospect but at the same time knowing any remnants of it will be gone.

Dean just had his 2nd chemo yesterday after a 5 week gap between that and his 1st one due to low platelets. Did you get a kind of burning throat as a side effect from chemo? How do you feel after your 4 chemo sessions now - eating better? have you been advised to do anything specific re fitness ready for the op?

Hi as for the burning throat. Yes I had that periodically. I have to be honest it has been nearly  5 weeks since the last chemo including the 2 weeks straight after. I am feeling much weaker than I was and emotionally exhausted. I have been told to do as much exercise as possible between now and the op so that recovery is quicker. I am worried about the second lot of chemo as I will be less able to deal with it after the op. Eating is still not bad but certain things taste different. Keep feeling that I have only 3 weeks until everything changes for ever. People keep saying that it’s good that the operation is coming quickly as I can get back to normal sooner. I smile and say yes but the reality will be very different. I wish things could go back to how I was. I had never even heard of this type of cancer before. I have spent the last 3 weeks doing every little bit of DIY I can as it may be a while before I can do much around the house. Sorry to sound so down but maybe Dean might get like this and it’s when he will need family the most. 

Thanks for quick reply Boxbrain -(just checked through messages and you haven't said your real name) Don't apologise for being a bit down & apprehensive re that op, of course you will feel like that. Dean is already like this, he's even mentioned not having the op - I know he will if his life depends on it though. He's scared of the op itself & the recovery & what life will be like after. He knows he's lucky that the op is possible but still scared. Its a lot. I'm scared for him, so is his wife. His wife says she doesn't want him to be 'butchered'.

Remember when you went to that support group & you met those guys who had had the op a decade or 2 ago - they said it was daunting but they're still here & have adapted. Thats what the body does, it will adapt.

My brother in law has Ulcerative colitis similar to Chrohns disease and had ALL his stomach removed when he was 26 plus majority of his large intestine so all he has is small intestine really. I would never have known (hes 60 now) when I first met him about 25 years ago I had no idea, as he eats literally anything and drinks beer & cider - often way too much. He eats hot curries etc.

Anyway, I know he still has the oesophagus but I am saying he had huge changes to adapt to and has. He has 'dumping syndrome' which I know can be an issue after the Ivor-Lewis but my sister says he manages it. Hes always worked full time and he plays sport and has a full normal life.

It's not fair this has happened to any of you guys in this chat, I don't know whats going on but so many people under 55, 60ish getting cancer, its crazy.

When I was younger we never knew anyone with cancer, now is so common.

Any time you want to air your fears, or share anything just pop on here & talk to us. No one would judge you for being fed up with things & worried.

In a few short months you'll be looking back at what you've been through and feeling good about it once you get to a new normal.

Thanks Karren. My name is Marc by the way

Hi Marc. 
I know what you mean about all the DIY before the op. 
I was the same as there’s no way I could have sat looking at stuff once home. 
I was forever at the tip  

we also had to sort bank accounts out and get a Will sorted as there’s always that bit of your brain that says I may not wake up  

I have a koi pond and was seriously considering getting it shut down as my partner wouldn’t have a clue how to manage it. 

im now 4 weeks post op the scar on my abdomen has all but gone. There is a smaller one on my back which got an infection but that’s almost sorted now too. 
saw the dietitian yesterday and was told I could eat more things. 
nice one off to the chippy we went. Chips and a load of gravy. I only ate the soggy ones but must have eaten too quickly and got dumping syndrome. It wasn’t nice and took a few hours to subside but at least I knew what was happening. 
lesson learned 

gone back to yogurt and ice cream today, will reset and try again tomorrow 

Hi I have a note book that has all the little things in it that I can remember to tell my wife just in case such as passwords and where the radiator key is etc. Hope the eating gets better. Still you are at least attempting food that’s a bit more solid now. 

Hi how is it going. Have you managed any food that more solid yet. Do your insides feel different?

Hi Marc. 
yes , building back up slowly. Ate out at a cafe for lunch ( dinner where I’m from ) had an omelette although I could only eat half of it. Have to eat slower, you can’t just chuck things down and you can’t eat as much as we end up with only a tiny stomach. Had a spicy rice with some “sauce” on it for tea. . Am eating better so I’m slowly knocking down on the overnight feed thing you leave hospital with. 
I’ve been given my 2nd lot of chemo dates. Start again on 5/6 exactly 8 weeks after operation 

Good Luck on 2nd for your op , you’ll be in good hands 

keep us posted 

Kev

1. Sorry didn’t answer your second question. 
   insides feel the same, no different whatsoever. 
   stomach/belly below the incision feels weird to touch , it’s sort of numb like it’s got local anaesthetic in it still. It doesn’t hurt just feels weird. 
   im told it’s just muscles and stuff knitting back together 

Hi Kev - sorry, I know you're replying to Mark but just wanted to say it sounds like you're well on the way to healing now. Glad you're able to eat better even if it's slow progress.