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

Hi Milly and everyone else reading 

yes i had the full operation but it was no problem at all , i have been posting my progress since my operation last june and i am getting back to normal now with not really any dramas to report , as i have said to others just ask about anything , its always good to hear from someone who is as far down the recovery route as me and how to deal with any hiccups which buy rhe way are also  a side effect of the procedure , anyway ask away and take care.

Regards 

Douglas

Hi Rayb

so pleased you got great news , i know where you are coming from , after all the high activity everything goes all quiet and you are suddenly left without constant medical attemtion and that is all a  bit bewildering , trust me that is a good thing as it allows you ttime to heal properly , good about your weight i am still  a 30 inch waist and 77kg but am good with that now , as usual take care and keep in touch.

regards

Douglas

Douglas

Hi Doug,

So glad to that hear life returning to normal for you. I had my EUS today. Have to say was a little uncomfortable and I got very emotional at the end. Which I felt embarrassed about but not sure many people noticed if any.

They can see the cancer in lining but not too deep which is a good thing. They may have caught it early. They did say they noticed an ulcer at my ogj. But they couldn't determine yet if it was cancer or just an ulcer.

That's all my diagnosis tests done now, I will go back to hospital on Friday. They have said I am allowed bring someone with me for this. I kinda want to go on my own but my friends and family are insisting that I bring someone with me. 

I don't like a bug fuss made. I like to process things and then talk to ones I love with the correct facts and knowledge. I really hate worrying or upsetting them.

Hi Ruth 

You are just at the start of your journey and the next few months will usually  be filled with tests and teratment in pretty quick succession , i have about 30 odd posts going back to last summer about my experiences and even have done reviews on google about my treatment , many of the others who post on here have been through the same scenarios since then  , i started my journey about a year ago so i would expect you to be in the same position as i am today this time next year , i am lucky enough to be able to put a very positive spin on the whole thing but only because of the first class treatment i have recieved from the NHS , trust me a year line passes quickly and i often wonder what the fuss was all about , i am a very happy bunny and have been throughout my journey and hope yours will be the same if i can help at any time with anything you are unsure about just ask , take care and keep in touch

regards

Douglas

Hi Doug,

Thank you for replying. It does help as I'm getting anxious about the op which is scheduled for 4th May. On a positive my husband is exercising and eating well. At the moment I'm trying hard to take a day at a time which I don't find easy. My husband is very much more pragmatic about it all which is good. 

I'm pleased that you are feeling much more normal now. 
 

Thanks again.

Milly 

Hi, 

Ruth- you are soooo like me, I hate fuss and if I am going for 'that sort' of appointment, I would always want to go on my own. Exactly like you, I like to process my stuff first. I like to 'get it' first, then tell others or not tell them, depends on what is going on. No right or wrong way I guess, 

Glad you are going on Friday to get the verdict. They will also presumably give you the plan. It is weird, we felt a lot better emotionally when we knew where we were going.

The emotional stuff is really kicking in with us now ! Now we've been discharged from most stuff. The strangest thing, I am getting upset about good memories!!! , so is he. Thinking about past holidays n stuff. Also a really weird one, all the close  relatives who are no longer here, how much we would have liked to have chatted with them about it!!!!! What is that about?

Millie 58- of course you are anxious. My brain was like a washing machine on spin cycle with all the thoughts. The best 'remedy' for me was always ( still is ) distraction. I was at work the day he was on the table !!!!! I was probably as useful as a chocolate fire guard, but my colleagues knew what was happening and no doubt shielded me and carried on with total normality, I drove him in , in the morning, by the time I got home, within the hour the hospital phone to say it was all done......... don't ask me if it was the right thing to do, but it worked for me.

Watching cr** on the TV is quite a good distraction , as is clearing out wardrobes etc. Anything really that focuses you away from the op.

Anyhows. Off to 'distract' myself now (:

Hi Hilts,

Thanks, I am not working at the moment so I will need to sort a distraction for the day. Our eldest son has arranged to have some time off so I'm not on my own. Think we will go for a long walk! So difficult with COVID. Hopefully that situation is easing. Trying to keep busy before 'the day'. 
 

Hightened emotions bring back all sorts of thoughts. I guess you are at the stage where you are trying to assimulate the past 8 - 9 months. I'm pleased you are returning to some normality, I truly hope we can do the same. 
 

keeping the faith to use your phrase.

Regards to all

Milly
 

Hi Rayb

Great to hear from you and that you are doing well.  It's always a worry getting the results - 1 had a +ve on 1 lymph node, but they said it was peripheral to the node and hadn't made any inroads.

This irritating cough seams to be consistent - I've now got my PICC line in for the 2nd FLOT (starts next Tuesday) and am looking forward to the DEX to kick in and see if that deals with it.  Hopefully it hasn't returned for Hilts husband after his final FLOT.

Yay, 

I was wondering where you were BFG!!!!. Everyone , including me, has gone a bit quiet.  Me, because we have been helping out in a 'Lamb maternity ward' , and last night chasing them about. All good stuff especially for kids. No, all this has not turned us into 'sheep fanciers', a mate has a flock, so helping out.

Ah, The cough.  How do I put this. Okay, I'll just say it. He still has it, BUT we went on a crusade to manage it. Up shot= Brown inhailer from GP, a steroid to calms the irritation, also a upright pillow acid regurge. ( amazon)  swilling gaviscon at night. Much better, but one positives of the post op dex, it did stop in , all be it temporarily. Also not stuffing himself with platefuls of grub, in one sitting - arrrrggg (:, as of course the 'tank' - gut is half the size as to what it was, so gets fuller quicker, hence it also causing bubbling back up.  
I think, I would be right in saying, that you hit a 'flat spot' emotionally post op, as you have been , on a crusade and now most if it is done, also post op healing takes time, Doug has been very helpful on this part.

1 pos lymph node out of all they took sound pretty good. They removed it. Gone. , and that  is the point of the post op FLOT., what did the rest of the reportsay? Yes I am very nosey (:, but feel free to tell me to go away, if you'd rather not share. I felt we needed Bletchley park to de code ours, but with help on here managed it.

Imhave to press the fact that Doug is exactly right, time improves it hugely.

take care and keep the faith.

Hilts

As if I could hide.

I am very mildy asthmatic, and have thought about going back on the preventatives - it's interesting that he has been put on them.

I had been sleeping upright using pillows, but now on a wedge pillow (also from Amazon) which combined with gaviscon seems to work.  Sleeping on my right side is manageable for about an hour and half, then it's back onto my back.

They only took the 1 node out - it was the only minor hotspot on the pet scan.  They are not very good at providing full-blown technical breakdown (I'm sure it's there if I asked for it), as there view is that its such an individual journey and you can be pidgeon-holed into something that may or may not happen, but what I do know is that it's a T3, N1, M0.

6 more days to the start of FLOT part 2!

As if I could hide.

I am very mildy asthmatic, and have thought about going back on the preventatives - it's interesting that he has been put on them.

I had been sleeping upright using pillows, but now on a wedge pillow (also from Amazon) which combined with gaviscon seems to work.  Sleeping on my right side is manageable for about an hour and half, then it's back onto my back.

They only took the 1 node out - it was the only minor hotspot on the pet scan.  They are not very good at providing full-blown technical breakdown (I'm sure it's there if I asked for it), as there view is that its such an individual journey and you can be pidgeon-holed into something that may or may not happen, but what I do know is that it's a T3, N1, M0.

6 more days to the start of FLOT part 2!

Hi bfg,

It's good to hear from you and that your results are good.I hope all goes well with your 2nd FLOT. My husband's op is planned for Tuesday 4th May.

Regards to all.

Milly 

Hi Milly

It's a scary sounding op, but one they do on a very regular basis.  I was put on what they call a super-green ward down here which was segregated from the rest of the hospital to minimise covid risk.

Getting fit and eating well will all help - there will be a physio who will have him up on his feet pretty quickly, and advising on the breathing and excercises to do.

I'll be thinking of you both when I get my FLOT.  :-)

Mike

Hi Folks

Yep, Millie we all know exactly how you feel. Totally agree with bfg, it really does just crack on. They do so very many of them, know exactly what they are doing. 
And they will drag him out of bed the next day , whether he likes it or not (: everyone spends at least 24 hr on ICU, don't go by what you see on TV- nothing like it. My husband biggest complaint was slipping down the bed. They go to icu because of the length of surgery, the complexity and the amount of gadgetry they come out with.. if he is moaning about anything, that is a very good sign......

As for you, distraction all the way, find something to do- like killing weeds with a spade something physical. 
BFG- think - this is the FINAL hurdle- you are then DONE!
okay folks

best wishes

Hilts

Hi Mike and Hilts,

Thank you for your replies which are reassuring. My husband has now had both vaccines which is good. Unless things change I won't be able to visit him but the main thing is that all goes well. Trying to take a day at a time. 

Hilts you made me laugh re weeds. 

All the best

Milly

Hi everyone, my Dad was diagnosed with stage 4 esophageal cancer in August 2020. We are a family that live and work in Spain and as you can imagine this news is devastating. I wanted to share our experiences of going through this journey in Spain, with you all. If I can offer any insight or advice of our own experiences and learn from anyone of your experiences, I think this would be very useful.

 My Dad is 62 years old and had a stoke in 2016. He has always ben a very fit and active guy and is a real fighter. Immediately after the daignosis my Dad started 6 rounds of chemotherapy which wasn't a breeze but my Dad managed it reasonably well with manageable side effects.My Dad also opted for an immunotherapy clinical trial that he is now on - we don't know if he was accepted or whether he is taking a placebo, our oncologist here in Spain claims he doesn't know either whether my Dad had been accepted and the oncologist claims this is normal procedure here in Spain.

The oncologist said due to the fact it is stage 4 and had spread to the lymph nodes, operating wasn't an option. My Dad had really struggled swallowing before the chemotherapy started but after a few weeks of the chemotherapy, swallowing improved a lot. Over the last couple of weeks my Dad has started to struggle swallowing again. We are having scans every 6 weeks - the scans have shown a slight reduction in the lymph nodes on 2 occasions and on the other 2 occasions there has ben no change, so we are happy with this.

My Dad has blood test every 3 weeks and scans every 6 weeks. This world of cancer is all new to our family and as i'm sure you'll all agre is so scary and horrible. 

Also my Dad had covid in February whilst having chemotherapy and was kept in hospital for 4 days and they found he also had pnumonia on one lung. My Dad has recovered well from the covid but still has some symptoms.

Please feel free to reply, ask me questions and share any relevant information.

Lee

I seem to be saying this an awful lot recently 

Welcome to our 'oesophageal cancer club' .All of us on her being fellow travellers on that crazy rollercoaster ride that is diagnosis. We have got really good at finding each other.

Lee- your Dad is another 'Young'un'.  He sounds like he is getting really good treatment. There are a few stage fours about on here. One that is 7 yrs down the road with his palliative treatment. They never operate unless you are as fit as Mr Universe LOL. 

Great stuff that your Dad is on an immunotherapy trial. Brill.  My husband is now on the Aspirin trial. The old placebo thing drives us mad! Like Russian roulette. With clinical trials, I don't think any of the medics are ever told who is on what med or placebo. The only people that would be aware are the people who are in charge of the trial and that will be a closely guarded 'need to know' basis. If word got out on any research trial, that would completely invalidate the results. Is it the proverbial guinea pig- yes, but participants  go through a pretty thorough consent process and are fully aware of what they are being asked to do.

I think everyone on here saw a massive improvement in swallow after a few blasts of chemo.  Are they going to blast your dad some more?
 

Now the emotional side of it ,OMG where on earth do you start with that one. Have a look through my old posts and on this trail. All I can say is dramatic and intense.

Millie - glad to make you smile, d'ya know, if you can't laugh what can you do eh!
get slashing them weeds, you'll be known locally as ' The slasher'.

keep going folks

Hilts

Hi Hilts - thanks for your reply.

At the moment the oncologist is saying we should just stay on the immunotherapy/placebo and see what happens through regular blood tests and scans. He did say that a second course of chemotherapy would be an option if things got worse. 

Lee

Hi lee

Sounds  like a cracking plan. He seems to be very well looked after.

Sometimes I think it is worse for the onlookers ( family/ friends). My husband , aged 56, diagnosed out of the blue late July last year.has got through it in very 'brave' mode. Like everyone on here, just plodding on as best we can.

SomethingI've told myself since the start is 'it's cancer, a treatable and manageable condition in a lot of cases, it could have been a whole lot worse, diagnosed with some hideous condition that is always fatal and has no treatment whatsoever ever' , the good old 'bus' could have run him over etc.

I look at him and think wtf just happened, it almost doesn't even now seem real.

Anyhows , keep us updated

best wishes

hilts

Thanks Hilts, we just keep trying to educate ourselves as much as possible and remain open to all options.  We'll try every option and remain positive.  We say 'we have cancer,  but cancer doesn't have us'. 

It's very comforting having contact with people in similar situations. 

Good luck. 

Lee 

Hi Lee,

It sounds like all options are being given to your dad. My husband was 62 when diagnosed and even now it still seems unbelievable. Everyone is unique but it's good to be in contact with others who are going through this difficult situation. I have used the Macmillan nurses support line which I found useful. Also there should be support via the NHS. 

Hilts thanks - I'm pretty anxious right now. We've been on lots of walks last week and stomped on a few weeds!

Milly