Hi Hilts! I searched and found this - 

After an oesophagectomy some people develop a dry cough which can be persistent and cause you to feel sick and regurgitate. Try to keep your throat moist, suck a sweet or try codeine linctus syrup which will suppress it. Also try not to talk too much as this can exacerbate it.

Guessing you probably already have this info, not sure if its much use perhaps others who have been through this can be more helpful. Just wanted to say hi too, hope you are ok x

Hi Hilts 

i had the dry tickly cough for the first few months think its part of the healing process and its gone now must just be the pipework aroiund the epiglotis adjusting itself to its new position or such like.

i trust all is well otherwise

Regards

Douglas 

Nice one Doug & Daisy

. Thanx for coming back. Doug - I think you are probably the 'oesophageal club' mascot (:

Yep, I thought it was something like that . To all the medics it is seriously minor, but for us, I swear I was going to swing for him last week (; !
 It is a bit better last 2 days and 'steam ' inhalation is really helping, I guess it moisturises ?

Even good old 'Gees linctus'  (laudenam) didn't touch it ! Brilliant stuff, but now discontinued sadly, but I did stock up with it. What is it these days- they take everything that works off the shelves and replace it with *** stuff that doesn't. If someone really wants to sit there sipping gees all day good luck to 'em I say, I can think of worse things to do(:.
 

Post op FLOT starts Monday grrrrrooooaaan. As needs must I guess, one will be down, 3 to go, then 2 down, 2 to go and so on.

It is going to be really strange when we are done toward the end of March. What on earth are we going to think about (apart from worrying about recurrence!). Holidays I guess....fingers xx

Have  you been jabbed yet. We are both now done, , him being in group 4 (post op & chemo)and me in group2. God, they have cracked on around here, fair play.

it really angers me when the media go on about how bad and 'overwhelmed' the nhs is- I know there has been some poor individual stories, but honestly I cannot belive how quick and 'proper' this whole thing has been. The media really should be ashamed of itself sometimes!

Hi Hilts

Good on you , i am 64 and still waiting on my "vulnerable " jab hopefully in the next week or so , well done going for the extra FLOT the most i have heard anyone doing is a further 3 and at a reduced dose , as for me i am thinking about starting to do some work in March or April which will be exactly 1 year since diagnosis more or less , so take it easy and you should be well on the way to normality by the summer , again welldone and take care.

regards

Douglas

Hi Hilts

Sorry - this isn't going to be any help as I'm about 12 weeks behind your husband.

But this gives me an opportunity to say "Hi" and thank you to you, Douglas, Daisy and the countless others that have appeared with regards to the "oesophageal club".

I've been lurking in the background since early December, Male - 58, diagnosed in October and cleared for the FLOT, surgery, more FLOT regime early November.  

FLOT started late November, finished 4 weeks ago.  Vacination was given on 1st Feb, CT scan gave the all clear for surgery on the 3rd Feb. Fitness for surgery test is tomorrow, with surgery planned 2nd week in March.

Cheers

Mike

Hi Mike, good luck for your surgery and continued recovery. 

Hi Mike, 

Welcome to the club . 
Glad you've found stuff useful and keep on posting. I find Daisy 71 in several places and I also crop up in several places. 

Mike, if you are auditioning to join the 'club' we need full details, symptoms, grade , measurements etc,all the grit please........sorry, only joking, I think I am funny and do have rather a dark sense of humour. What else can you do eh.

i noted that there is a 'friend' thing. I wonder if that is how we get us all on one board??? No idea, as do none of that social media stuff and the ' suspicious ' in me, thinks 'safer' in public posts. Never know who any of us are (:

Have a think fello posters about doing that, don't mind either way, then any club newbies that turn up, we 'invite them' to join the 'official fan club'. Myself, Daisy and Doug are also posting on another 'club' board, so if we all think it is a Go'er , invite them as well. I suppose if we do , do it, then we'd have to accept that some stories won't be positive.

I only joined the club in very late July and what an absolute rollercoaster it has been. Husband is now on the post op FLOT and finding it pretty tough, grumpy as 'ell, but I think that will be the mahoosive amount of dexamethasone he was given on Monday 20MG intravenous. OMG, enough to send even a dinosaur off its head..........but at least the cough has gone!!cured......

He's had a good surgical outcome and this chemo is regarded as belt n braces- he 'only' has 3 sessions left and then we will be done ( for now- eke), we have lived the dream (I mean nightmare) so intensely for the last 6 months, we might weirdly 'miss it' .

But I think the emotional effects of the whole thing will go on a lot longer.

Mike, get peddling! You"l be through the op before you know it.

best wishes.Hilts

Many thanks, Daisy and Hilts

There is nothing wrong with a dark sense of humour.  We were buying butter last November that had a best before date of April and wondered if we should include it in our wills.

As for symptoms - increasingly worse gastric reflux, followed by stuck food.  The 2nd time it happened, a phone triage with my local GP rang an alarm bell. and before I could blink, I had an endoscopy (where they diagnosed the cancer), followed by CT, PET, staging laparoscopy and the final go ahead to be on the curative path.

They are strangely nervous about grading - they seem to feel that if you stick a label on it, then that drives everything else - where it is very much an individual diagnosis and treatment.  There is nothing on my notes as such, but when I asked the surgeon it's a T2 with the possibility of a local lymph node involved - which I think is a T2B.

Measurements - 6' 8"  :-)

Rollercoaster is the right feeling for it, but without the breakman on the back (anyone remember them?).

20mg of dex?  They gave me 8 tabs - 16mg - at my last FLOT (on the 13th Jan) ready for my next FLOT which they reckon will be 6 weeks post-surgery.

I am delighted that the surgery had a good outcome for your hubby - my preop assessment on Friday went well, and I passed the fitness test – woo hoo.  There was a moment that reminded me of a line in Jaws when the assessment nurse said - We're going to need a longer bed.  Surgery will be in a couple of weeks and then the fun really starts.

At the moment – things are 1 step at a time. I’m hoping that post FLOT, restrictions will start to ease and we can rejoin friends and family. (I had the vaccine on the 1^st Feb – as well as being on the extremely vulnerable list, it’s hospital policy pre-surgery).

Best wishes all!

BFG this made me laugh about the butter, and your measurement! I take it you are tall? 
thank you for making me smile. Good luck for your treatment, keep up the good spirits, but remember we are here if you need to vent anytime x

Hi BFG,

OMG, your symptomology reads exactly like ours. Worsening reflux, bit of clogging. GP, endoscopy, diagnosis, PET/CT chemo, chop, chemo . Husband has been on the unit/ward with 2 other guys, exactly the same, he being the oldest at 56yrs. What on earth is going on !!!
Husband was T2 clinical staging, then after pathology final was T1b ,L 0, M=0. I like data (: gives me something to quantify.

Hub also had problem with length of bed.... they took the foot board off. He = 6'3"

The have seemingly invested in beds that cater for width!!

Yep, 20mgs of IV dex. He was sure midnight running!( that was dexampthetamine though (:), same effect seemingly. He normally has the 8/8/8, but as this was the first post op cycle, they just told him to turn up on the morning, put the PICC in and away to go.

With the op he was only in 7 days!! Chucked out xmas eve yyaaaaay. He was all keyhole, his 'travelling companion (fellow chemo and op patient) was in 9 days, him being open (different surgeon). Both of the spent about 36 in ICU, but not because they were ventilated or critically ill, but for intensive monitoring after such complex and long surgery. I went to see him the day after, still on ICU, but reading the paper and drinking ! and moaning about the uncomfortable bed!, they fixed that by getting him out in the chair, the day after (: Walking about the day after that- fixed the uncomfortable bed problem!

They put a feeding tube in ,down low on belly.That is still in ,as they wanted it to stay until chemo done. Overnight feeds  stopped after a week, but we have been shovelling water down it recently as he feels so sick for a few days with the chemo, that he gets quite dehydrated- not any more, we didn't ask, just did (: Your butter might come in useful.....(:

Hi Daisy

Anyhows- crack on and keep us all in the loop. 
Hilts.