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

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Yaaaayyy- everyone

I knew it - I reckon we all know each other LOL. The amount of 'coincidences' among us are bonkers. My husband reckons that chose 7 people you know and there is a high probability that you will know or have a link with all the people in the world!!!! - me, being a very non maths person reckons that's hogwash, but he- being the scientist/ maths wizz reckons it is perfectly possible..... I digress....again.Maybe that's why we are having a pingdemic ?

Leechaps. This apple does not let my do emojis on this board, or I would put a load of claps and hearts in. That is blooming fantastic news. Get out there !  You're Dad is now the 3rd stage 4  person just on this board to have the blighter walloped into place.

Yep Millie, it really is little tiny daily steps and before you know it.......back

As y'all probably know my husband bought himself a nifty new car last week. My neighbour has just asked him is he becoming Walter White !!!!! Lol

take care & keep the faith - we will all get there. X

Hilts

Thanks Hilts...

Hi y'all, 

Just reporting in. Just picked husband up from hospital.

He was having a 'ballon dilation of his 'join'. Scar tissue that has healed a little to well (:

He had a nice time on the 'sedation' and is now across from me stuffing tea and toast.

Went really well. The original surgeon did this, so knows what his 'interior' looked like. Said it needed stretching and used a a balloon to do it- they even sent him home with pictures of the procedure !

even better of course is that he had a look around down there and no biopsies, as nothing dodgy seen (:

yay

Keeping the faith folks

Hilts

Very good news Hilts...nothing 'dodgy', I like your style!

Lee

Really pleased that you haven't got a dodgy husband Hilts

back home now, stiff, sore and wobbly and full of wind (no change there!) Surgeon said op went really well, onwards and upwards for the big one now!

keeping the faith

Hilts - Tea and toast?  No beer?

It's great to have the confirmation that nothing is going on down there - I still find it odd that there is a hands off approach to post-op follow-ups.

Hope all went well with Tabnabs, and great to hear about your dad Leechaps and your hubby, Milly.  :-)

bfg

Very good news Tabnabs, glad it went well - onwards and upwards. 

Lee

LOL MILLIE, 

NO, no beer LAST night. Too 'chilled' with all the fentanyl & midazolam.. Keith Richards would be proud (:

As for the hands off approach Millie, I got the impression when I spoke with MDT nurses when I was having a 'moment' when he was discharged from Oncology, that with this type of cancer, there are no clues apart from symptoms, they told me they only scan and scope if there is new symptoms- I was a bit miffed by this to start with, why can't they scan and scope him monthly!!!but now (on reflection) I get why. No PET SCANning, as it has to be a certain size for PET to pick it up and that size would also be big enough to cause symptoms. No scoping as again, if no symptoms then to small to find it. I wanted them to find the ONE cell under his little toe nail that was thinking of setting up home and murder it, but sadly doesn't work like that.

He got the scope because of a persistent cough- which we know was caused by scar tissue, but also they didn't find anything else dodgy down there, but again the old favourite VISABLE disease free (:

Him and the kids have gone swimming today in the river, as all the council pools still have their 'restrictions' going so the whole district is in the Thames- council can't stop us having fun.LOL

Yes, tabnabs, he 'dared' mentioned a 'bit of wind' yesterday- let's just say the trouble didn't last long!!
keeping the faith

Hilts

Hi all,

bfg I just wondered if my answer was correct?

Hilts - pleased your hubby's procedure went well and nothing dodgy was found. Bet you're off out in your sports car this weekend so enjoy! 
Tabnabs - pleased your procedure went ahead and the surgeon was happy - always a good sign!

Keeping the faith

Milly

Hi Milly

You were spot on. :-)  they have a fantastic permanent outdoor conservatory now with removable side panels during summer.  Do let us know when you and hubby are down. 

Tabnabs - it's always the trouble when I take so long to reply, the world moves on and I'm glad that your procedure went well. The subject of wind and chemo is funnily documented over the web as something that isn't really mentioned as a side effect. Peeling wallpaper,  beezlebum and being unable to blame the dog for that one.... are some of the comments.

 Cheers all

Bfg

Hi Milly

You were spot on. :-)  they have a fantastic permanent outdoor conservatory now with removable side panels during summer.  Do let us know when you and hubby are down. 

Tabnabs - it's always the trouble when I take so long to reply, the world moves on and I'm glad that your procedure went well. The subject of wind and chemo is funnily documented over the web as something that isn't really mentioned as a side effect. Peeling wallpaper,  beezlebum and being unable to blame the dog for that one.... are some of the comments.

 Cheers all

Bfg

Bfg, have to say that isn't so bad this time round as it was with the first lot of chemo, could have inflated a small airship then!
Hilts, that's really interesting about PET scans, always wondered

Thanks everyone for good wishes

keeping the faith

Hi all

Yes , Tabnabs- I knew absolutely zero about PET scan before this, but my chemist of a husband felt he had to describe in fine detail the whole thing(:

They inject you with radioactive glucose, let is find its way around the body for a bit.

Cancer cells LOVE sugar, so they really love to absorb masses of the glowing glucose (:, shove said person in scanner and watch the little ba* rds glow., BUT , and there is always one, even though microscopic cells will soak it up, they are too small to be seen on imaging. So any 'tumours' have to be over a certain size. I might be talking rot, but that is how I am understanding it. Amazing bit of kit really(:

Yes, Millie we've been out all day, not in the sports car (:, but on the river - not in it for a change. Sailing- soundS glam - er no, just one of those inflatable boats that you can buy from a major sports shop beginning with D and just drifted down river, once had enough, deflated it and go the bus home (:

Now just poleaxed on the sofa (:

keeping the faith

hilts

Hi all, just at the start of this OC journey, lost my dad nearly 10 years ago to this awful disease. Not quite ready to share yet as still trying to wrap my head around it all, but have spent the day reading this chat and am inspired, in awe, and feeling comforted.

please forgive me for not sharing more x

Hi Bee-Q

Welcome!

I haven't been on here long myself but I have to say what an awesome group this is, really supportive and very welcoming. 
take your time to absorb the news, and share when you're ready,

it's a really tough time for you, but we all understand and have been through the mill one way or another.

keep the faith

Tabnabs x

Hi Bee_Q and welcome. 

I can only reiterate what Tabnabs has said - this is a place where you can find very useful and encouraging info that can help you in your journey through this horrible illness- stay strong and believe that each year that passes better, more advanced medication is found and used to fight this cancer.

Good luck 

Lee

Hi Bee-q

A huge welcome to the now legendary oesophageal cancer club board.

You share as much or as little as you like. The good and or the bad. No rules ( apart from the site ones)

None of us are medics on here, just fellow travellers on the rollercoaster ride that is OC. I suppose we might even say 'living the dream' I love vomit worthy cliches.

We all on here, I think it would be fair to say, have found each other amazingly helpful. We thrive in anonymity. Although I am starting to suspect we all know each other! So many 'coincidences' (: what's been so 'therapeutic' is we all 'get it' and when one of us has had a bad day, we can all truly understand how the other feels.

We - my husband is the 'victim' me = the chatterbox, are just out the other side (for now- eke). Visable disease free a year almost to the day of 'that endoscopy'. 7 months post op and 4 months post last chemo. We still look at each other and say WTF just happened. Surreal doesn't even come close. He was 56 at the time of diagnosis, expecting maybe an ulcer or two giving him upper gut rot, Long history of reflux, never expected this.

You are probably extra stunned and 'twitchy' having lost your Dad to this, one or 2 on here that it has happened to.

The physical is one thing , but the emotional stuff is a bigger beast altogether.

Hope you keep retuning and sharing as much or as little as you like. I am a great big 'spiller', share most things. It is weird that I find sharing so therapeutic; almost a way of ' processing' everything , making sense of the spaghetti that are my thoughts.

Anyhows

always keep the faith

Hilts

Welcome Bee_Q and Chrissy 

We are a friendly, helpful and supportive OC group. I, like Hilts, am the concerned wife! I've been 'Head of Research' but be careful on that one! My husband is on a 'need to know' path. Probably the better path to take! Lots of sites have out of date statistics and are a scary read.

No pressure on sharing. I 'stalked' this chat until I felt ready to join. Some post more frequently than others and that's what's so good, share as much or as little as you like. We are here and as it's been said we aren't medics and everyone is unique. We have each had different experiences but we will answer questions that we feel able to.

If you've read the posts you will have a general idea of our journeys. My husband was diagnosed at the end of October aged 62  - a complete shock. He is still on the pathway and has an appointment with oncologist this Wed. Unfortunately he has had a few deviations - it's been like snakes and ladders! However hopefully he is back on the right path again! 

Chrissy - not sure what plo means but the cancer team or your doctor may help? 

Keeping the faith

Milly