Hi is anybody still on this thread? I'm kinda new to this club and just about to start my 1st cycle of FLOT before surgery. Still so many unknowns including how much stomach I'll have left (if any). Won't know 'Until we get in there, and you might have an osopharectomy too'' is, though understandable, not the most comforting quote I've ever heard. Anyway just thought I'd say HI if anyone is still around!?

Hi is anybody still on this thread? I'm kinda new to this club and just about to start my 1st cycle of FLOT before surgery. Still so many unknowns including how much stomach I'll have left (if any). Won't know 'Until we get in there, and you might have an osopharectomy too'' is, though understandable, not the most comforting quote I've ever heard. Anyway just thought I'd say HI if anyone is still around!?

Hi Shayde, I still get updates when people post as do others so still active.Sorry to read your diagnosis but get the chemo and surgery done and hope it goes well. I’m nearly 3 years post chemo with FLOT and then surgery then more chemo. I found the cumulative effects challenging second time round but got through it. Take it steady I found round one felt ok day 2-3  round 2 about day 3-4 and so on. Made sure I got out and about as much as possible when felt ok in between ie pre-habilitation get as fit as you can for surgery as it’s a big op! Eat as much as you can and try and gain weight you will lose it post surgery and recovery I ate ginger biscuits as helps nausea and get a soft toothbrush and used difflam oral rinse also. Good luck and if not sure ask here

Thank you so much for replying. My weight is a problem child though it's why I left something here cos I think the OP said she was the same. My normal natural weight is 7-71/5 stone and didn't matter what I ate I couldn't put weight on. (even during my pregnancies and it could fluctuate by that 1/5 stone within days so I was never sure which I was really) I just about reached 8 full term. I'm 8 now and they're counting a pound if it changes but I put 2 stone on during menopause and it was just coming down when this all started LOL so not the best timing for people watching my weight! I can still eat with occasional 'stuck feeling' but it's mostly food fighting wind cos after some burps I'm usually OK...that's why I had symptoms for 2 years before I had any tests done. Wish I'd known earlier that indigestion could be something else, but here we are. I've got the shakes as back up as well so there's that at least. As for ginger biscuits I love them but they didn't help with morning sickness but Rich tea did so we'll see :) I seem to be thirsty a lot though but water makes me gassy so it's cornflakes a lot of the time with ice cold milk, they go down surprisingly well. But I had a much better appetite BEFORE my biopsy. The hospital that performed it was not my regular one so didn't know me so while I was out the gastroscopy couldn't so they did it alongside the laparoscopy under a general.So while I was out they saw the 'gap' or apparent lack of and assumed I couldn't eat and put an NG tube in but they also gave me a throat infection. Cos of the tube nobody understood my sore throat I was complaining about was NOT the reason for the tube so it was allowed to get worse till I took my hubbys antibiotics out of desperation 2 weeks later. They worked so I finally got past the rottweillers on the desk at my GP'S and saw my Dr who gave me better ones and since then I've had less interest in food which is a pain in the neck. I mean my eating habits were erratic anyway but I'd got some sort of rythm that worked for me but now I don't even have that but I'm doing my best to work on it. Thanks for the tips too, 

The unknown about the surgery "we won't know how much we're taking till we get in there" is both understandable, but very worrying too. But my latest CT scan showed shrinkage apparently and my first cycle is on the 23rd! So fingers crossed I guess. 

Thanks for the tips what's special about the Difflam oral rinse? I'll try and find some.

Hope you're well. Sorry for such a long post!

Hey hey- still here, but rarely come on here these days. Why? Well it’s been 6 years since ED ( endoscopy day) and he/we are still here!Discharged from everywhere apart from the aspirin clinical trial- although the is coming to an end soon.

Not sure how much of guts he has left, but certainly enough to eat far more than he should and drink too many pints ♀️.

As another poster said it is blooming tough and the lovely chemo’s effects are cumulative- but you know certainly do able.

This thread was my solace before, during and after . I read loads , he didn’t - just took what came at him. Not sure how many of the original riders are still here. It’s strange , but as the whole thing came to the end I needed this board less and less.

So , for you take comfort in the survivors and ask any questions you want

Thank you for replying and updating with thankfully such good news from your perspective. 'm glad it all went well for you and him, hopefully mine will too. I can certainly understand people leaving I wasn't even sure if I wanted to join at first, but it's been a positive experience so far and hearing so many good stories (some with worse odds than me has helped tremendously. 

My surgeon seems a lot more positive after my second scan now too so that helps. Just wish they'd lay off my weight. This all started at the end of losing weight from menopause I put on 2 stone but have always been petite, I can't just gain weight (even pregnant) so they'll just have to deal with what i can do I guess. luckily I'm pretty healthy otherwise so with a bit of luck that will help. 

Thank you again and Best wishes for a long healthy life to both of you.

I don’t blame him - I have mixed feelings everytime I return to this site, for obvious reasons. 
Always happy to answer awkward questions. 

Hey Dave.

so glad you are still here too remember you well with your very reassuring wisdom . Another 6 years ticked. Here’s to many more.

Take care

and me too will answer any questions 

Hey- yes, They were always twittering about husbands weight - need to gain every time he was seen. With hindsight he now has no probl ms with it now - then. He kept dropping , but for me it was always “really who would think one would loose weight with all that lovely appetising chemo and having a load of your guts removed “ he couldn’t bare those supplement drinks enough to make you vomit- but did enjoy lashings of olive oil, melted cheese in everting, Rodda cream , and large volumes of ice cream generally. 

• Hi all, I did reply Shayde but for whatever reason it appears not to have sent!
  
  

My husband has recently had his 5 years appointment and has been discharged yeh! His was a long and complicated journey (documented on here) which you may or may not want to read. However everything crossed he is doing well. 
Hilts and her husband were on a similar journey (everyone is different) a few months ahead of us. Weight gain is good but you can only do what you can. 

Drinking water during chemo helps and the Fortisips are better over ice cream. Exercise is also key as the operation is big and heart health is important. Hilts started the going up and downstairs several times routine! 

I remember you too Dave and your positive outcome. Hope is essential along with doing what you can to help yourself both mentally and physically and I appreciate this isn’t easy. I felt overwhelmed at times as the patient support role. It’s tough but doable and the staff are amazing. My best wishes to you and everyone who is facing this diagnosis- one day at a time and there are people who live and get back to life albeit a new normal. 

keeping the faith as always

Milly

Craving ice cold water but it has always made me instantly hungry and gassy which now is even worse so little sips only unfortunately so substituting with ice lollies when I need a cold drink lol. Stairs is a given in a house of 5 one with epilepsy and a needy daughter and my 95 foot long garden is a long and bumpy slope so I get quite a bit of natural exercise but I got myself an exercise bike too to get even better. 

I agree with the shakes. i was stoked when I FIRST got some....sick to death of them now...too slimy and the plus ones the biopsy hospital made me drink were worse. They ALWAYS send wayy too much vanilla now too LOL

It's currently early hours of Saturday morning however and I'm suddenly feeling a lot less confident now treatment is imminent. Went to Dave day today (big bike event...had been planning on doing the whole run up to Barrow but thanks to all this kicking off just went to the meet up at Knutsford. Hubby has back issues and was in immense pain but kept it quiet...so quiet I thought I'd upset him so wasn't the best day all round, nice but felt wrong if you get my drift.

Hopefully, this feeling will pass like it did when I was first told and I admit I didn't get much sleep today so probably that's not helping either. 

Made an arm band though to keep stop the picc line flapping around, so I get to sport that on Monday I guess!

Thank you all for coming back I'm sorry for all the bad memories but I really appreciate you all sharing them with me.

Thank you guys and best wishes to you all.

Hi Hilts I've finally braved the first few pages of this very long but invaluable post and noticed you and Milly and the guys talking about the J tubes and specifically 'night feeds'. I expected some sort of post op pause on physically eating due to stitches and such , but nobody has mentioned night feeds once. Does everybody have to have them and if they're eating well why is it necessary? I can't remember who it was but it was interesting to see someone with a very similar grading as me (T3/N1/2/M0 in my case). It was bad enough waking up after the biopsy/laparoscopy to find they shoved a NG tube in cos 'you had a very tiny gap'....yes but if you'd asked I was still eating...the joys of not being treated at your local hospital who have ALL your records. Then just cos I 'had' one they all decided I needed to stay in 3 days and fight my way out by forcing 5 of those damn drinks down cos they wouldn't even let me TRY to eat. As it turns out my 'sore' throat soon put a stop to it anyway but now that's all cleared up it sounds like I'm heading back there in 2 months time and would like to know what I'm 'looking forward' to. honestly that all creeped me out but my hubby happily flushed my NG tube for me...not sure if I'll be able to wake him for night feeds though his meds are STRONG!!