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 ?

Just saying hello and that I hope your treatment goes well (I am sorry I dont know what FLOT is) my husband has oesophageal stage IV, T3/4, N1, M1 (lung) he cannot be operated on, and is on EOX week one, doing ok so far. I have spent all week in tears as I am so scared by it all but he is being really brave so I need to man up for his sake! There is so much support and information here, it really helps. 

I want to wish you a happy and healthy Christmas and a better new year. Sending positive vibes for all of you x

Howdee.

welcome to the oesophageal club- no doubt one you'd rather not be in (:

How did your man present, how long was the trouble, how old is he.

if you read back through mine ,the ********* began on 29 th July, officially given 8th august. I think I have experienced every emotion under the sun, sometimes all in the same day.

tThis board is good, where you can spill in 'private'

FLOT- that left me scratching my head, but found out that it is 4 chemo drugs given at each sesh. Every 4 weeks. Nuclear stuff I am told, it has a taxane and platinum.

We are now through the first lot of chemo, and now the surgery, maybe there will be more chemo. They are going for curative intent, but we are under no illusions how 'clever' cancer cells are):

Dont know other regimes, there are loads of them.

There are a few stage 4 people on here, hopefully they might find our little thread.

It seems there are a lot of us 'oesophageals' about, the guy my husband went through chemo with, is now in the next bed to him, he is only 44! Mine is 56!!

maybe it is because I am mega tuned into everything oesophageal, but it seems to be very much on the increase.

best wishes

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

Really glad his surgery went well, and wishing you a good Christmas x

Hi, 

update from the front line!
 

i have posted this in another board, I haven't worked out to post to multiple boards, or get us all on one, but I'll write this again.......

yipee- He came home , day 8, 6pm xmas eve yippeee- sorry , I am enjoying being a tad childish. A small positive moment in the rollercoaster that has been , well, coasting since August.

i made a full dinner yesterday.  I puréed the lot for him, swimming in gravy, ate the lot.No Dumping, but his guts are still probably still thinking WTF. Today, it is turkey curry......purée.

covid has made it all a tad easier for us, no expectations to meet family or friends, to go anywhere or do anything- so just us, front door closed, doing what WE want to do. Which for once is absolutely great.

onwards we go.....