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

Oh that is such an awful state of affairs.

mind you , it could have panned out much worse for us.

Husband went to GP in the March with minor swallow probs and reflux , was put on omeprazole. After a month no improvement whatsoever. It was me that had to be the pain in forcing him to go back- lots of , how do I put this politely- persuasion- he would have been quite happy swilling the gaviscon. I think it was because of my ex nursing background, that something just didn't sit right.At that point the GP referred straight for an endoscopy and the rest as they say is history, and boy oh boy fast as lightning once the endoscopy came up as dodgy, 5 weeks until chemo started.

i suppose I am quite the pain in the ar*e , but this time I am so glad I was.

take care.

So sorry for your loss. Absolutely hideous disease. Xxx

Hi there  I have been diagnosed with Barrett's esophagus been waiting from march last yr and finally this Thurs having my 3rd gastroscopy feeling very scared and worried and waiting for CT scan 

Hi Rivers, 

Is this your 3rd monitoring scope? , do they do. CT as part of that monitoring. Of course you're scared and very worried. Completely human reaction, I never say 'don't worry' to people as it about as useful a comment as a chocolate fire guard, along with 'coping' and 'strong' what on earth do they mean.....lol. 

During this whole affair, I found the only thing that help at all is distraction. Doing something, anything to interrupt that constant stream of (understandable) thoughts.

i will be a wreck once we are done with treatment for the 'monitoring' appointments every 3 months aarrrgg. Wondering if any little cells hiding under little toe are moving to set up home.

But what else can we do, but keeping plodding on .

Hi hilts yes it my 3rd one hope I kk I new to all this on here it's nice to actually  talk to someone who understands  thank you .

Hi Everyone,I had my operation on the 23rd of Febuary and went from the theatre (10 hours) into ICU. The operation, Im told wasn't straight forward, a piece of my lung was taken and my appendix. The following day I was moved into the (gastro) ward where it was planned I would stay there until I was discharged. Unforunatley on the first day back on the ward I had my first little walk with the phsyio team and after sitting down my breathing rappidly decreased and I was sent back into ICU for a further 3 days. After that I stayed on the gastro ward until my discharge on the 2nd of March, a total of 8 days! I was origially told at least 2 weeks and up to 4 if there were complications. I have had a terrible cough since the op, has anyone else suffered this? Im finding it hard to sleep, more because of the cough than the op. I was catheterised for 2 weeks which was one of the worst things ever!!!!!  I have gradually been put on solid foods as well as peg feeding during the night, so my diet is varied and good. Its been a bit of a bumpy road, I have my good days and bad but I have received 6 star service of the hospital, to who I am most grateful. Sorry for the delay in replying to this forum, but its took time to get into new routines but im getting there. next step  results from what was taken and chemo within a 12 week window. How is everyone getting on ?

 

Yaaaayyy, 
RayB you made it.!!!!! We (all the oesophageal club) have been waiting for you to post. All wondering how you were/are. And here you are

All the details please. So we can all compare and contrast. -sorry, but I am genuinely pleased that you are through the other side. You are about a month post op now then??
Honestly- husband really picked up after about week 8, and now at 17 weeks is almost back to his previous (apart from the anaphylactic reaction to the 7th oxiplat) !!! Last chemo tomorrow. FLOT , without  the o (:

yyayyyyy

best wishes

hilts

Hi Hilts 

Yes a month post op tomorrow and what a long month its been! Good to hear your husband picked up wk 8, hope its the same for me. How has your husband been after this lot of chemo ? Thats good hes nearly at the end, party planned ?? : )

Thanks for all the support

Ray

Hi Hilts 

Yes a month post op tomorrow and what a long month its been! Good to hear your husband picked up wk 8, hope its the same for me. How has your husband been after this lot of chemo ? Thats good hes nearly at the end, party planned ?? : )

Thanks for all the support

Ray

Hi Rayb,

A the post op cough. He has it too- really annoying (: it's not chesty, sounds like he throat is being tickled  with a feather ! It improves hugely when on the pre chemo Dex ,so obviously some sort of irritation.

Post op,chemo- Found it tough. He had anaphylactic shock to the 2nd post op oxilatin. Full monty, adrenaline , crash trolley etc but by the time I got there , sitting up red faced in bed (: so today he has last FLOT without the O. He has a very 'active'immune system !
As for a party - mmmmmm , yes we certainly are thinking about celebrating, but we really can't think about what we want to do! - we have been in the double whammy of Covid restrictions & cancer . We are fancying a major holiday, but restrictions, so who knows. He's been back on the beer for weeks!

Did you have the op open or keyhole?. He had keyhole, but the same as you as in icu for 2 days, then home day 8. He has been on night feeds again now for 2 weeks. They decided to leave the jej tube in until after chemo finished. He was losing a fair bit of weight and his appetite was shieeite because of the chemo, so decided to stop further weight loss by overnight feeds. Worked a treat. He's also been shovelling a fair bit of water in to the tube as very dehydrated after chemo. We didn't ask about that, just did it ! Until his wee looked paler (:

You will probably get your final pathology staging soon, so x fingers for you

Anyhow- need to Chuck the kids out for school.

take care

Hilts

Good Morning

Well a bit better nights sleep now ive asked to be back on the Codeine just for the night time dose and it has helped.

Ive had full op : (  or as i call it a shark attack. cut all the way up the front also down part of my back and around the side, stapled and stitched.

They are keeping me on night feeds all the way through till after chemo as theyve said the body repairng its self uses lots of calories, although im eating great at the mo. Not looking forward to the next chemo. just not fit enough yet. Having the catheter fitted for a fortnight really got me down, such a clart on. Then of course ive got pneumonia, they think im over the worst but im very weak as anyone would be, without all this going on.

Next appointment Mon 12th April, for results and to talk about the taking of my appendix and a small part of my lung....maybe there was a take one get one free offer on HaHa.

Your husband sounds like hes doing great,thats marvellous news!  

Fingers crossed all this lockdown business comes to an end and we can see some family & friends. My wife is back to work in a couple of weeks, but is grateful to be furloughed so we've been together for the last few months. Its only 6 months since shes had a hysterectomy, my god we've defo had our NHS quota this year. 

Im just off to have a bit M&S triffle, got to be done, keping the cals up! : )

Take care

Ray

Hi Ray! Great to hear you are ok. Hope you enjoyed the trifle. 

Hi folks, 

yep , I hope you enjoyed the trifle. He is now back on full monty diet- after about 8 weeks. He's had huge steak, and burgers (: & fair few beers (:

Last chemo on Tuesday- seems a lot better than previous ones , that is probably because he knew there was no more - dare I say for now ..........

JEJ tube now removed!!! By itself, this morning, It just fell out!! , that is probably because all the stitches broke over the last week and he thought not to mention it at the unit!!!!. Ward said not to bother putting it back in now as needs to up the diet without the safety net.

thank god it is the last Dex today!! Omg- that stuff is like ,well, something illegal. Could it be dexamphetamine rather than Dexamethone!!!
 

Hi Ray

My op was a week after yours and I thought my 9 hours was hard going,  although I did become a bit of a legend as it took 3 hours to put the catheter in and was eventually done by a consultant urologist. There was a bit of a panic when they took it out on the Saturday as they had to put the urologist on standby just in case I didn't pee on my own (which I did).

Glad to here you are eating OK - I'm still having to semi force feed myself - I've been given some aymes shakes to try, which are a lot better than the premade drinks. I'm fine on sweet stuff, trifle, yogurts - it's the protein side of things I struggle with.

Looking forward to steaks and burgers and real beer!

Cheers

Bfg

Hi BFG, 

spotted you. Glad you came over (:. Just need to fish out Daisy 71 & Doug.

Not much to report from our side. All quiet. 
14 weeks (there about) post op. 
so look to the near future chaps and look what awaits you . Mmmmmmm
He /we all had Domino's on Saturday, He managed a large pizza in 2 sittings!!! & a cobra- pint that is...
Yesterday - large beef joint roast

this morning- fry up with the 'iron rich' black pudding.

We even booked another holiday- took a risk and went for Portugal in August.

we really are in a 'f ' it ' mood . (: (:

Hi all,

I have been following cancer chat since the end of October when my husband was diagnosed with Oesophageal cancer after being referred from the Doctors for an endoscopy. It was a total shock as the classic symptom of food feeling stuck was recent and 'not that bad'. He choked  on a piece of apple which prompted the phone appointment. 

I replied to Hilts and she mentioned this link as having lots of information. We have had quite a long journey already from diagnosis after endoscopy, all the tests resulting in a laparoscopy on 16th December and then a proposed treatment plan going forward on 30th December. FLOT, surgery then FLOT. However surgery wasn't confirmed until yesterday and I felt like I couldn't join in the chat until I knew surgery was being offered (like tempting fate I guess) sounds silly saying that but that's how I felt.

The treatment started at the end of January (delay due to compulsory DPD test for FLOT (this was a new requirement). My husband has coped well and managed the side effects. Not easy but he completed four cycles without any major events/problems. Now for the biggeee - the op. He has adenocarcinomas of the oesophagus junction known as GEJ and is T3 N1 MO with a query as to whether the lymph nodes are affected or just enlarged.
We will know more when he has ghe appointment with the surgeon. Not sure if he will be shot like you husband Hilts or be attacked by a shark RayB. Reading the threads and your experiences gives us hope so a huge thank you for being brave and sharing your hopes and fears. It is a journey no one wants to be on not even in a First class compartment! I hear the drinks are a bit iffy! 

As you will all appreciate it's been a long 5 months particularly during lockdown. However I must say once treatment started it's been easier in some ways as you have a goal and something to focus on. My husband was 62 at diagnosis (now 63) and was fit and active. He is working hard to get fit and gain weight before the op. Any tips welcome and if you are happy to share if anyone else was juntional cancer too?

kindest regards,

Milly58

Hi Milly

I had the op back on 2nd March about a week after Ray and have been home 3 weeks tomorrow. 

My understanding is that cancers are either in the upper part of the oesophagus (and tend to be smoking related) or at the lower part near the GEJ (cause still being worked on). I believe most of 'us' have had part oesophagus and part stomach removed.

I think it's true to say that each journey is unique, but it's fantastic to hear what is the art of the possible - Hilts husband is proving an inspiration on the food front, though I have a few more weeks recovery before steaks and pizza are in the menu. 

Definitely keep up the fitness and weight pre-op - there is huge weight loss post op, especially after discharge.

I was also a T3 N1 M0, and am currently being geared up for the 2nd round of 4xFLOT.

Like you,  I didn't post until I knew I was in the curative path.  :-)

Cheers

Bfg

Hi Milly. My husband has oesophageal cancer T3/4, N1, M1 (lung) no operation planned. He is on round five of eight EOX chemotherapy and is doing amazingly, he can now swallow nearly normally, has gained back a stone of two lost, and you would not know he is poorly to look at him at all. 
As for what may be ahead, I honestly don't know, he was deemed 'palliative' only, does this change if things improve or not? Anyone? 
He is 63, no prior issues other than indigestion hiatus hernia stuff. Diagnosed November, after difficulties swallowing, and hiccups when eating. Our boys are 22 and 17. 
 

Am wishing you and your husband the very best of luck for his treatment.

Hilts fantastic to hear about the pizza, and the holiday, good for you, loving the attitude x