Thanx both, 

yep, the difference with the cough happened immediately- incredible. So maybe ,finally,  we can move on. Don't get me wrong, we are vvvv pleased that no dodgy bits, but the cough was driving him (and me) MAD. Fair play to the unit though, they just got on and sorted it.

At the moment we are watching 'For a few dollar more' - I love it especially the score/music. He is pain free and moaning about how itchy his bullet wounds are ......, not wounded by Clint or Van Cleef (:

He was on free fluids straight after op yesterday and got to eat by evening, light diet one might think- er , nope not him chicken korma followed by jam sponge and custard!!! No beer though as hospitals are, as yet unlicensed (:

Millie- you absolutely Enjoy Tenerife- warming the bones and not cooking (:! Is gooood for the soul.As is 'curative' beer (: 

Lee- let us know any updates

Keeping the faith

Hilts

Hi Hilts /Milly, back end of next week...feeling positive but very uncomfortable...just planning everything as best we can so we'll all be ready.

Lee

Hi Lee,

I think how you are feeling is perfectly normal. I felt a mixture of relief that the big day had been agreed but also trepidation.  Remember they are highly skilled professionals whose vocation is to help patients. This op is big so they don't do it unless they think that

a) the patient can tolerate it and

b) they feel it's worth putting the patient through the operation.

Hang on in there and if your dad is aware that you are part of this group please send him best wishes that he has a lot of fellow patients and their relatives routing for him.

keeping the faith for everyone 

Milly

Hello,

Dad has been given new date of next week too, I completely understand how you are feeling Lee. A little helpless but also remaining positive that this is a massive win in the next stage of beating the OC!

I hope all goes well with your dad and I look forward to hearing about his progress!

Hilts - great news on your hubby! Yourself and other have inspired me with your stories over the past 6 months! I talk about your stories to my dad like I know you personally!!

Hi everyone, 

Milly - thanks for your words of encouragement as always, they really help.

Scott - thanks also,  I'll keep you informed over the next few days of progress. 

Distraught- I am probably not the best person to reply as my Dad's situation is not really the 'norm' - we were diagnosed stage 4 and only palliative (but things have changed slightly). I know that catching OC early gives you the best outcome possible so that's a real positive for your husband and your family- good look with your next stage. 

Lee

Hi distraught

In the words of hilts - welcome to the club that nobody wants to join.

I was diagnosed at the beginning of October 2020, and like a number of others on this little chat of ours was put on the FLOT/surgery/FLOT path.  Surgery was back on the 2nd March and the 2nd round of FLOT completed on the 17th June.

I can't sugar-coat it - it is quite a hard journey, think rollercoaster and bumper cars, with the odd twister thrown in.  You are currently going through the assessment phase to check and double-check that the path is suitable for your husband.  There will be a team setup in the hospital who will probably meet every week (a multi-disciplinary-team (MDT) who will discuss the PET scan and if confirmed localised, then there will be a final laproscopy (where a camera is inserted) and the major organs checked over for any signs of spread.  Once all confirmed OK, then FLOT/surgery/FLOT will kick in.

It's great that he is still eating well and it's important to keep the weight up and to ensure that your husband is reasonably fit for the journey.

We are here for you and can answer any questions, however gruesome they may sound.  

And feel free to rant!  We've had some great ranters on here (I won't mention any names - cough).

You should also have access to an Upper GI nursing team who will usually be on the end of a phone to answer any ongoing questions around treatment and timescales.

cheers

bfg

Hi

Hilts – great news on the cough.  That’s been bugging since the op, so must be a relief that he’s on the mend now. Also great that he’s not on the minced and moist diet (I still have strange dreams about that). 

Scott, Lee – thinking of you both with your respective fathers going through the op.  Do feel free to throw any questions our way!

Milly – holiday in the sun!  Outrageous behaviour.  Let us know where you are staying and we can all come and visit!

cheers

bfg

Hi Distraught

there are a few of us on here who have been posting for over a year and throughout the 50 odd pages of posts , in reponse to your PET scan question in my case it was about two weeks after the scan when i first met my oncologist , this is the point when you will get an indication of the grade of the tumour and size , in my case it was less than 3cm  and non invasive , the treatment plan was agreed and then about a month later i started 8 weeks FLOT followed by a months rest during which i met my surgical team and had the necessary pre op assesments ,  then on to the main event 10 hours surgery , two weeks in the ICU and general ward and then home , i was seven months start to finish and believe me as the patient it absolutely flew bye , i am 16 months post op and probably will be recovered to the  level i want to be at by mid 2022 , i know it's a bit much to read through 50 odd pages of posts but there are stacks of hints and tips in there , the main thing is NHS cancer care is second to none and the people who specialise in the oesophageal cancer are at the top of their game , if you have any non clinical questions feel free to ask them on here and i am sure someone will be able to offer some advice , there are quite a few who post on here who are the patients family and i understand you have a different perspective , as the patient i can assure you you never feel neglected during the process but it does require an element of patience to get through it , don't Google anything  just ask on here !!! or phone Cancer UK , take care for now and keep posting

Regards

Douglas

Hi y'all, 

Hope you are all chugging along. Strange things going on with my notifications. I used to get an e mail for every post, but I though we had all gone off living it up in the Caribbean or something as I was soooo quiet, I get a notification this morning from Doug, to see that there are loads of posts that I have missed- any IT/forum wisdom out there- I checked and I am still following the thread ???
 

Scott/Lee - square up to it and smash it! You'll be done soon enough. In my humble opinion distraction IS the only way to get through the 'big day' . Keeps,the shredded nerves in check- a bit(: Scott- I know exactly what you mean about knowing people personally. As I have said before, we all just might know each other , without knowing it LOL. That's the thing about this site and why I reckon it is soo helpful, we all spill and vent in the 'comfort' of 'privacy/anonymity' only a couple of million people can see it eh. We can and do spill our deepest, darkest and private  without 'worrying' what people might think- not that we should worry about that, but we all probably do !
 

Distraught- Welcome, I am glad you have found us; all fellow travellers and experts in the 'lived experience' (: . I think I will be cheeky and say that this part- where you are - is the worst part of all on this rollercoaster. The shock, disbelief, tears , anger and all the other human emotions exploding. My then 56 yr old husband was diagnosed out of the blue in July 2019, a bit of clogging with food and coughing. E Day (endoscopy day) 29 th July. MDT appointment 8th of August ( we delayed it by a week for holiday- what else are you supposed to do eh) in that time as well as holiday, PET & CT scan etc. That MDT appointment is when you get all the info staging and treatment plan . We got a T2 not lymph's or spread ( Downgraded after surgery to T1b- don't worry , you will become an expert at all the terminology!) As for what you'll be offered, there are soooo many variations, but it will no doubt involve chemo at some point. Keep coming back to ask and vent away. None of us are medics , just as I said 'experts in the lived experience (: Once you know where you are going with treatment, it does get a bit better. Also, as Doug says, google and the net in general is a total horror show; we all have done it , knew we shouldn't and probably still do, but it bears NO reflection on the reality of most of our experiences. 

US- well , cough had gone ( big clapping emojis), back on full diet! BFG- the 'horror' of minced nd moist! at the time though it is the first post op foray into food, so a great achievement, as you look down to your much awaited first meal and tah dah ! LOL - the best incentive ever to move on....

 BUT, there is always one or two- he has had a massive allergic reaction again- this time to the iodine they used on his op site!!! Not anaphylactic, but pretty bad, scratching like a flea bag. Does anyone know if all this treatment makes you more prone to allergies? As his body decided it didn't like the platinum either ):

Anyhows, 

Keep keeping the faith folks

Hilts