Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

hi,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

Thank you for your message. I already typed out a reply but it doesn't seem to have saved!!! My reason for replying was my mum was offered further flot after surgery this never materialised. There were no further scans or anything in the follow up. Push for checks.. whatever you can get..... when my mum had surgery part of the cancer got away and went somewhere they could do nothing about. Get everything you can and dont settle for anything less than you deserve. If scans and flot had been done after my mum.might still be here. Sending so much love..xxxxx

Thank you for your message. I already typed out a reply but it doesn't seem to have saved!!! My reason for replying was my mum was offered further flot after surgery this never materialised. There were no further scans or anything in the follow up. Push for checks.. whatever you can get..... when my mum had surgery part of the cancer got away and went somewhere they could do nothing about. Get everything you can and dont settle for anything less than you deserve. If scans and flot had been done after my mum.might still be here. Sending so much love..xxxxx

Hi .

i did not receive post op FlOT as my tumour was downgraded to a T1 after the pathology and the initial chemo had destroyed the tumour and it was contained in an area less than 3cm i was however given the option but having lost 18kg and the excellent results  posts op  it was agreed it was not really beneficial , i cant fault my treatment and everyone is different , its all about what stage you are diagnosed at , i see my oncologist every month and i am in a very good place now , a bit early to say i am cured but all the feedback says yes , you take care of you and your family and god bless you all.

Best thoughts to those who are bereaved. What can one say. No words can be said that would make it any less painful.

it seems to me that with this cancer there is a very very fine line between curative and palliative. More so than with any others ( I may well be wrong here) and it doesn't take a lot for it to tip over into palliative. In saying that though there is a very brave and stoic chap on here who is 7 years + into a stage 4 diagnosis.

 That was one of the first questions I asked the team. Told them- no flannel please, tells us what we are dealing with- and they did.

doogreg- yours was an amazing response- down a whole stage from FLOT and that is incredibly positive.

i am told, now it maybe urban legend, that only about 40% complete FLOT because it is so aggressive?

i have to say 'cancer took my mum' we are not having the same experience with the hospital. Yours sounds awful, with lots of gaps in the treatment. How on earth can they not follow up on such a major operation- what were your mam's staging etc pre op. How much were you told. We have been told quite clearly, that the plan is curative BUT there are absolutely no guarantees. The nurse said " it only takes ONE rouge cell to upset the apple cart.

so while we are optimistic, I think we are also reluctantly of course realistic.

Hi Hilts

 thanks for your comments as i said previously its all about the early diagnosis and the diagnosed staging as to the chances of containment , unfortunately i have met to many people who were already in  a metastasis situation which puts the risk of the cells spreading elsewhere much greater , my heart goes out to them as that is a different thing to deal with , only surgery and pathology can reveal the true situation , from what you have told me so far sounds positive if i can help you in any way with advice on anything connected with your husbands treatment please message me , take care and stay strong both of you.

Hi Everyone,

This is horrible thing to have, my staging is stage T3 N2 hopefully the FLOT treatment will have the desired effect, to give me a chance to have an operation and followed by more FLOT,

 All you can do is keep positive, keep as fit as possible eat as much as possible (obviously heathy lol) and hope for the best.

Hi Ray

Thats good   tumour less than 3cm no metastasis and only 2 lymph nodes i am sure you will get through the chemo and onto the operation no problem fingers crossed , keep in touch during your chemo and let us know how it is going , remember don,t be afraid to ask about anything you are concerned about , take care.

Hi Dooggreg

Thank you for your support, yes I will update this thread, and keep you up to date with my journey through this process.

Hi folks, 

How are our oesophageals doing out there.

posting my  update.

Husband finished his FLOT chemo toward mid November, with a 'partial response' whatever that is ‍♀️.

Had his Oesophagectomy on Wednesday 16th. All keyhole. 8 hours on the table.

Now he is  on day 3 of something called an 'enhanced recovery programme' when I turned up about 3 hours ago, he was sat in the chair, drinking coffee!!!!!. So was the guy next to him!

Drains and drips in place, but he is walking around the ward!!
I was shocked, in a pleasant way, by how quickly they push the recovery- they expect to Chuck them out on day 7. He is exhausted, but asking for a paper etc.

Don't know the pathology stuff yet, but really not as bad as I was expecting

How are you all out there ?

Hi Hilts

it,s good to hear your husband has had his operation , i am now six months post operative and 90%

recovered , the pathology does take around four  weeks which usually coincides with your first follow up, if yo have any other questions feel free to ask , i am always happy to help, otherwise have a merry christmas 

Regards

Douglas

Hi , 

thanx for coming back.

yep, he's all done and dusted. I could not belive how slick the whole affair has been. When I worked on the wards (okay, it was 1989!,), the op was horrendous and recovery pretty gruesome and lengthy. Not like the 'modern' job in any way. He is day 6 today and all he has left is the chest drain , or the bucket as most of the chaps in his ward call it. He is eating purée now and we have had the pep talk from dietician. All the pain stuff has gone too and he is on oral (jet) meds. All the  4 'wounds' are tiny no more than say an inch, and glued not stitched. Honestly it looks exactly like my gall bladder op. Impressive stuff.

He is utterly exhausted- hospitals are noisy and as I tell him , his body has taken an enormous nuclear hit.

Really hoping to have him home for Xmas, so he can enjoy purée turkey, with a side of pigs in blankets.....purée. He can then have a wonderful nightcap of Jej feed (:

i wonder is there any way to get all the Oesophageals on a single board, I see lots of random single posts on here and thought it might be useful if we are all together. I suppose the downside of that would be if people were in a bad way, listening to positive banter would be really off, and vice versa, if you are in a good place, sad stories would not what one would want to hear..... just a thought.

Have you had much/any of that Dumping syndrome? He is flapping about that , I keep telling him trial , error and maybe never, and he will only know how to avoid it from getting used to his new guts,but just wondering how common it is?

hi again Hilts

in response the first 3 months at home can be a trying with with the appetite , hungry , not hungry , the feeding supplements help a bit although the bind of being hooked up to the pump is irritating and a good incentive to get your eating in check, yes the "dumping" due to over eating is a problem but you soon learn no matter how delicious the food is you need to limit the amount you eat at one sitting , after 6 months i have more or less got this under control , i have a cooked breakfast every day , soup or sandwich for lunch and main course at 4 or 5 pm  snacks inbetween and toast at suppertime , and that is maintaining my energy levels and weight , the biggest surprise is probably how you can adjust to eating probably half what i did previously , eating is not a race or a competition so eat slowly ! , and rest rest , rest , their has been some serious internal re plumbing done and it needs time to heal ! , as before any questions you have i am here to help where i can, have a good christmas

Regards 

Douglas