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 Andi and Hilts,

Fabulous news that you are sleeping better and that you are off to Turkey! Apprehension isn't unusual  and actually I think many people are more apprehensive than normal without what you've been through. However you will be absolutely fine! We booked an airport lounge which included express security and it made us relax more plus it's 5 o clock somewhere for a glass of something lol. Whatever you do I'm sure it will do you the world of good and another step in the right direction!

Hilts - hopefully you've found the source of the problem and as Andi said peace at last and it must be tiring for your husband too. Did you say he had decided to finish work this year? 

Our next adventure is the European road trip fingers crossed in July.

still keeping the faith

Milly
 

Thank you Milly - good idea to get an airport lounge - will look into that. European road trip sounds amazing - very envious!

Andi xx

Sorry Guys, its been a long time since I last posted, so must be making a great recovery

I hade my operation 21st November 2021, after a couple of set backs I stareted to feel like my old self around March 2022, was eating steaks and managed to avoid many episodes of dumping.

However, a gtrip away with work resulted in me getting food poisoning, not ideal when my stomach is half the size it was and my digetstive system still being  a tad immune suppresed.

To cut a long story short I lost a couple of stone over a six week period, *in the words of the surgeon, for  "normal" person it would be over within a couple of weeks at most, for me it would be twice as bad.

My doctor also said that because of the size of the stomach and lack of acids/normal good bugs I will always be susceptible, but with time it will settle down.

Moral of the story, is take care with what you are eating, make sure you clean your hands etc.

Hope everybody else is ok

Hey Tipo.

Very very please to see you are out the other side. Clapping emoji xx

Your recovery phase seems pretty good. It is a strange ole thing- little by little and bingo feeling so much better. You now need the 'sports car' and mega holiday to warm those bones (:

Make sense with the gut rot- as all fellow travellers know, acid is a scourge, but very useful at times. Maybe after living in Egypt, that's what caused his ' overly useful acid' . Took about 6 months gut  wise to recover from that (:

The cough- finished antibiotics on Monday- remains quite! who would belive after all the major stuff , it was that simple( fingers x - not tempting the old fate)

Keep keeping that faith folk

Hilts x

Hi guys.

Sorry I have not followed up my original post before this - things seem to have moved on so quickly I have hardly known whether I am coming or going. To precis the last couple of months, my oncologist took me off my chemotherapy as I was just not dealing well with it. Really unpleasant nausea and a significant weight loss (9kg) persuaded him that the chemotherapy was not effective, even at 75% strength, and so it was stopped after just 3 cycles of FLOT. Still managed to lose most of my hair, so at least I saved from going to the barbers.

So, all stopped on 4 April (68th birthday), with a promise that they would try to bring forward the surgery. They were good to their word, and I went into hospital on 27 April for the operation. This was a total removal of the Oesophagus (Ivor Wilson?) Procedure which as well as removing my little tumour at the junction between oesophagus and stomach, but also evicted my Barratts as well. Apparently, it was 7 hours 20 minutes on the table, and my surgeon has declared himself very happy with my result. I have also managed (so far) so escape from hospital after only 10 days.

There is always a 'however', and mine really started after getting home. Seemingly endless nausea, even with constant anti nausea pills. The worse part of this has been not being able to be physically sick. Wretching with no end product is never very nice, but I don't seem to be able to do this from my stomach, presumably because it is now an oesophagus. 

I have had my first follow-up appointment with my surgeon, and he has told me that he sees no need for any more chemotherapy as 'we got it all!'. When I asked about the Barratts Oesophagus, I was happily told that it was in the bucket on the floor with the rest of it . My only other worry has been a constant weight loss, which in any other circumstances I would have been delighted with. Since 1st March, I have managed to go from approx 19 stone to now only 13st 2lbs. I can only think that this due to a lack of appetite and an inability to eat as much as I used to do. I am not due for another scan which surprised me as I thought that maybe a PET scan might have shown that all of the nasty little cells had truly been evicted or destroyed. 

If anyone can shed any light on eating habits, or nausea relief, I would be so grateful for any advice. Other than this, I do feel tremendously lucky to have been looked after so well by the NHS staff at my hospital; they were, without exception, truly brilliant.

Sorry for rambling on a bit. Still keeping the faith ️ 

Snaggie

Hi Snaggie-

Well you did it ( 100's of clapping emoji's)

NOBODY on here goes on- it is a way of processing what the **** has just happened!
they got the lot then yay.

I shouldn' t worry to much about having 3 chemo's . The stuff is vile , FLOT is hard core. . My husband had to give up on the O part- oxyplatin as he had a great big anaphylaxis! As it goes, one is better than none, 2 is better than one etc etc.

He is now 2 years since diagnosis, 18 months post op and 15 months post anything. 
I think it would be fair to say that everyone on here has suffered with weight loss to varying degrees and problems with post op eating& dumping syndrome.big weight losses come post op, essentially you don't have a stomach anymore):.

my husband has suffered with clogging- not from a return of the unwelcome guest, but certain foods ( carbs mostly) tend to hang around in the re constructed oesophagus ( what was the stomach), so would cough A LOT and hawk some back. He has kinda worked out now what he can get away with, but still does 'fancy' somethings that he knows are going to not be much fun- but does it anyway!!
he has just stuffed a Cornish pasty! Without much of the pastry, but he is good with meat and fish, curry, and especially beer!

I would say it is pretty standard to lose appetite- your brain telling you " why eat something , if it is going to make you sick" All I can suggest is maybe a dietician and just literally graze all day with anything you fancy. My husbands weight loss stopped after about 6 months- he's pretty stable now.
He has had a lot of coughing since the op- had a few scar tissue stretches to help with clogging, BUT turns out last week that no medic had listened to his chest and low and behold a chest infection- so fingers crossed gone for now.

As for the scanning and checking- we have found that a bit weird too. Although he has had CT scanning because of the coughing ( didn't do the simple thing like listen to his chest though). It seems they only scan if any 'worrying symptoms' turn up, and PET scanning is only reserved to see how confirmed cells are behaving. I know what you mean though, it would be nice to have a monthly one (:

You were only done in April, so still very early days (: . It is a slow creep back up, but you will get there. Husband took really about a year.

so keep keeping that faith

Hilts x

k

Hi all,

Snaggie, first no need to apologise - you have been kept busy since your last post and posting on here is non judgemental. 
I am very pleased that you have had the Oesophagectomy (Ivor Lewis) we won't give Ivor Wilson the credit lol. It sounds a good resul. You are still early in your recovery so it's going to take time to settle into your digestive system. Because my husband had a series of complications he was in hospital for 5  weeks home for three then back in for another op. So by the time he came home it was over 2 months since the first operation. He hasn't suffered from nausea but he has had dumping syndrome which he still gets intermittently. Re weight loss my husband lost two and half and was around 12 stone 11 pre op. He has managed to get back up to around 10 stone eight or nine. Most people do lose quite a lot of weight and muscle. He takes dioralyte to replace salts etc after a dumping episode. These are less frequent and sometimes he knows why eg eaten too much but sometimes no obvious reason. If your weight loss is concerning you I would suggest that you contact your upper Gi nurse for advice. Scans don't seem the norm with this type of cancer which is hard in some ways. We all want someone to tell us everything is OK but from what we have learnt they only scan/test if necessary. 
Ofhers on here may be able to offer advice.

Tippo nice to hear your op went well. Yes food poisoning after this type of surgery must be worse and it's not good at the best of times. As you will see on here weight loss seems compulsory but by varying degrees. 

Hilts hope your husband is still cough free and you are enjoying your sports car in this lovely weather.

I hope everyone else is doing ok on their own paths. 
Still keeping the faith for everyone 

Milly

Hi Hilts,

Well I had to smile when I read your reply to Snaggie as we have both replied in a vary similar way!  I started to reply earlier but kept getting interrupted lol. Anyway good to read your husband is still doing well and no cough! 
This time last year Kev was very unwell and not able to walk very far at all so this years Father's Day is much better. 

still keeping the faith

Milly

Well done Snaggie, that's fantastic news !

Hilts, so good to hear you've got to the bottom of your Husbands cough, and sorted it ! 
 

Milly, hope Kev had a great Fathers Day and that you guys spoilt him rotten !

Lee, my Dads place is in Fuengirola but when Spain opens up its borders to us unvaxxed folk, I'll be back over there and will definitely shoot across the coast for a few Sam Miguel's and raise a glass to your Dad with you

Andi, did you make it Ice Cream shopping yet ? My 2am Hagen Daas or Cornettos, as prescribed by my surgeon to aid the post op weight gain still make me chuckle when I wake up for the loo in the night and then sit on the sofa chomping away at a bowl of ice cream !

Its helping though, the weight is coming back on which I didn't think possible after having the whole stomach removed !

Keeping on trucking and feeling grateful that my surgeon has kept me around to celebrate another Fathers Day with my kids, yesterday.

Hi everybody, Distraught here but now, glad to say, I am cauitiously optimistic.  Not wishing to bore everyone, but here goes with the latest update.

Surgery went as planned, histology was very good.  Surgeon said she managed to remove the relevant section (with good/clear margins) and turned out, lymph nodes were clear and therefore, left intouched.  He was in critical care for longer than expected due to a clot on his lung post op and is still on powerful blood thinners now as a result, which has to continue for 6 months post surgery.  Total stay in hospital of 7 days.

He has had some pain in the shoulder from the surgery, controlled by paracetamol, and can now eat small amounts of almost anything provided it's not too heavy/stodgy.  He's lost a small amount of weight since the op but nothing drastic.  He's having night time feeds via the pump only since having the second dose of FLOT as the chemo seems to be affecting his ability to eat as well as he was.

We have today reached a milestone, having seen his consultant on Wednesday and discussing the pros and cons of continuing with the FLOT for all 4 cycles, in as much as he's decided to stop now and not to push his luck any further.   He's had the side effect from the chemo of pins and needles and general lack of sensation in his hands and especially his feet, which at one point led to investigations into whether he'd suffered another stroke.  (OH had a stroke approx 2 years ago, from which he recovered well - only left him with relatively minor problems he learned to live with).

We  have come to the conclusion that it's a question of risk -v- benefit and the risk of long term nerve damage to his hands and feet outweighs the small percentage increase those final two FLOTs give the patient of the dreaded big C returning.  Only time will tell if this turns out to be the right decision but given the pins and needles etc have gradually worsened with each cycle and the advice of the oncologist that this is often one side effect that doesn't right itself after chemo ends, he's decided to err on the side of caution and take his chances.

There is no right or wrong here I know and this has been a difficult choice.  If it were just a case of grin and bear it during the next 2 cycles, then no question he would have continued with all 4 but as this side effect could potentially affect the quality of life drastically and permanently for what is a small percentage reward has brought us to this conclusion.

So, this is it.  Treatment ends for the time being and we are (thanks to our wonderful NHS) now in a far better position than I would have dreamed of last October.  Everything crossed now that it's worked completely and it doesn't rear its ugly head again.

A big thank you for the support from all on here who really helped when i needed someone to share this with and with people who truly understand as no one else can

Many, many thanks

(Cautioously optimistic - formerly Distraught)

Hi everybody, Distraught here but now, glad to say, I am cauitiously optimistic.  Not wishing to bore everyone, but here goes with the latest update.

Surgery went as planned, histology was very good.  Surgeon said she managed to remove the relevant section (with good/clear margins) and turned out, lymph nodes were clear and therefore, left intouched.  He was in critical care for longer than expected due to a clot on his lung post op and is still on powerful blood thinners now as a result, which has to continue for 6 months post surgery.  Total stay in hospital of 7 days.

He has had some pain in the shoulder from the surgery, controlled by paracetamol, and can now eat small amounts of almost anything provided it's not too heavy/stodgy.  He's lost a small amount of weight since the op but nothing drastic.  He's having night time feeds via the pump only since having the second dose of FLOT as the chemo seems to be affecting his ability to eat as well as he was.

We have today reached a milestone, having seen his consultant on Wednesday and discussing the pros and cons of continuing with the FLOT for all 4 cycles, in as much as he's decided to stop now and not to push his luck any further.   He's had the side effect from the chemo of pins and needles and general lack of sensation in his hands and especially his feet, which at one point led to investigations into whether he'd suffered another stroke.  (OH had a stroke approx 2 years ago, from which he recovered well - only left him with relatively minor problems he learned to live with).

We  have come to the conclusion that it's a question of risk -v- benefit and the risk of long term nerve damage to his hands and feet outweighs the small percentage increase those final two FLOTs give the patient of the dreaded big C returning.  Only time will tell if this turns out to be the right decision but given the pins and needles etc have gradually worsened with each cycle and the advice of the oncologist that this is often one side effect that doesn't right itself after chemo ends, he's decided to err on the side of caution and take his chances.

There is no right or wrong here I know and this has been a difficult choice.  If it were just a case of grin and bear it during the next 2 cycles, then no question he would have continued with all 4 but as this side effect could potentially affect the quality of life drastically and permanently for what is a small percentage reward has brought us to this conclusion.

So, this is it.  Treatment ends for the time being and we are (thanks to our wonderful NHS) now in a far better position than I would have dreamed of last October.  Everything crossed now that it's worked completely and it doesn't rear its ugly head again.

A big thank you for the support from all on here who really helped when i needed someone to share this with and with people who truly understand as no one else can

Many, many thanks

(Cautioously optimistic - formerly Distraught)

Hi Cautously optimistc!

I just logged on as it's been quiet on here which I hope Is a good sign and there was your post! Fantastic news and there is no right or wrong re chemo it is so individual. As you rightly said risk v benefit plays a big part in the decision. I'm delighted that they got it all and no Lymph nodes too! Fabulous news. Yes our wonderful NHS do their best to give everyone the best care. As we all know sadly not everyone has the same outcome but I'm pleased our OC group helped you at your most desperate time.

My husband continues to make progress fingers crossed. A year ago he had just had his 3rd operation in eight weeks. Your husbands stay was short which was good. My husband lost 2 and half stone but is very slowly increasing.

Sending thoughts and positive vibes for your husbands continued recovery.

keeping the faith

Milly

PS hope everyone else is doing ok and you made it to Turkey Andi

Hi,

As you rightly say, not everyone has such a good outcome.  We appreciate that in that way, he's one of the fortunate ones (so far).  It's certainly made us think differently about future plans and not to take things for granted; something we are all guilty of from time to time. Nothing is certain in this life and from here on in, we will certainly be making te most of what we have while we can.

Leading up to Christmas last year I genuinely thought his number was up  He looked dreadful, the weight had fallen off him, he had no energy and couldn't even keep a glass of water down.  He ended up in hospital all over Christmas almost to New Year being fed by nasal tube, starting chemo in January.  After the 2nd FLOT, he never looked back.

I don't really have the words to explain how grateful we are to all concerned in the health service who have all been first class.  He's had the best treatment given by a great team of dedicated, caring people and they have given him the best possible chance of coming through this long term.  He was unlucky to get the cancer but his reaction to treatment has been better than expected, so lucky in that way.

Off now to do my online shop.  Stocking up with high calorie, high protein food and the ingredients to make vast amounts of trifle (his current favourite)

Thanks again

Cautiously Optimistic

Oh wow that's amazing that he's responding to the chemo  . my partner has now had to change to new chemo as tumour getting bigger . They want to offer radiotherapy now I hope this works . He's on a feeding tube which isn't working, leaving him hungry all week xx I hope and prey he gets sorted he's had enough now . 
 

Enjoy your triffle

Take Care each xx 

hi distraught

i have not been on here for a while and am now 2years post surgery , the shoulder pain is a vagus nerve problem and will go away in due course as for the neuropathy in the hands and feet it will reduce quite a bit but personally i still have it and i am always feel cold in general, on another note has anyone on here noticed their voice has become different  , maybe slightly hoarse or huskier or weaker mine certainly is but not all the time , anyway take care and i think two years from now you will be in the same state of health  as i am now which is excellent

Regards

Douglas

Hey. Cautiously optimistic xx, 

GOOD NEWS. Got through it.

So he's now on the upward 'stroll'. Yaaayyy.

Incredible stuff when you think about it. Our story read pretty much like yours, my initial post were virtually the same as yours, then they evolve as we get more experienced riding the rollercoaster.

My husbands 2 nd chemo was also the biggy. All symptoms virtually gone- like there was nothing going on?

We are now coming up to 2 years post e day( endoscopy day) official mdt diagnosis on 8th August. 16 months since end of treatment.

Mine had a pesky cough for a long time, so scanned,stretched and scoped, but turned out to be a plain old chest infection, caused by 'overspill' when he eats to much!!! Mmmmmm - he knows what he is supposed to do, but honestly trying telling him that grrrrr. (:

As I said to the Surgeon " I am so glad you saved him, so I can now kill him myself " (:(:

We are off on holiday ( again) in 2 weeks, a relaxing one hopefully after the nutty Florida escapade 2 months ago.

I suppose I would go as far as to say (for now, not to tempt fate) Life is good.

Keep keeping that faith y'all

Hilts

I've been a lurker for a few months now,, trying to gain information on this horrible disease. My partner was diagnosed with this in March 2021, we were originally told he could have the operation, but it was decided that he wasn't fit enough. He began chemo in June, finished in October, then had 10 days of radiotherapy in January. During all this his weight has fallen drastically, he went from over.12stone to just over 6stone. Last week he was told that his haemoglobin was low and he needed a blood transfusion. Today, he had an endoscopy as they think his tumour is leaking? I've tried to look for information on how bad this is, but can't find anything? I wondered if anyone on here knew anything about it?

Trying hard to keep the faith.

Emsnan

Hello Emsnan and welcome to the club no one wants to be in eh.

As you probably noticed we are far more common than we think we are (:

As you'll know from lurking (: there are many of us sharing the highs and LOWs of our rollercoaster rides . I hate journey- such a cheesy word (:

Anyhows- yep the wonderful disease and what a cracker it is. Mine is now 16 months post everything and has yet another chest infection. Essentially- he stuffs to much then aspirates and bingo cough ,chest infection- some people just don't behave,

The potentially leaky tumour- no a clue on that one. You'll need to speak to your MDT. My husbands was an adeno, so a solid mass, nothing to leak apart from vessels bleeding, they did after the last chemo- but no bother for us as we knew the cell were pee'd off (: I guess you need to know what is leaking.

As for the op and not being match fit. A few on here have been like it. The surgeons are really really hot on everything being tiptop as it is such a major procedure. A few have gone the palliative route- before you gasp, that means managment/treatment of a chronic condition- not checkout time (: . One stoic chap is 10 ish years into his palliative and another is not longer palliative, but showing no active disease!
Be in no doubt though chemo is foul- does the job it is designed to do, but oh boy. I think every condition under the sun is a side effect (:, that is why his shot heamoglobin doesn't surprise me in the least, so get the blood in.

Now weight loss, that is something I know about! Mine lost about 4 stone, all on here have lost to varying degrees. Does your guy eat, or is he tube fed in some way? Mine has had both overtime. If he is unable to eat, have your team offered one? My husband hated it, but it took the pressure of eating for a while, especially during chemo when you feel as sick as a dog and NO appetite. It stopped more weight loss and even though they are pretty disgusting in terms of 'flavours' it did stop the massive loss and kept fluids going in and in a strange was probably encouraged his oral intake. Something to discuss at least ?
if he is taking stuff orally, then the highest calorie/ fat stuff you can find- might a trifle go down! Vast quantities of ice cream.?. Dietician?

Not sure if I've answered what you want, but please do ask away.

you have already learned the sign off

Keep that faith

Hilts 

Hi Emsnan

sorry to hear your news but as Hilts says - the NHS are amazing  - chemo is horrendous.  I am 9 months post op but had 10 weeks in hospital - 8 with a tracheotomy - but I have just returned from a holiday in Turkey and 2 weeks in Scotland - never thought it would be possible!!  I get very breathless but that's due to lung damage - not the big C!!

I still find eating a problem as I don't get hungry and am too busy now to fit in 6 small meals - my fault - still losing weight - 3 stone so far and may have to have tube in again (yuk). But I'm here, happy and pain free - what more could I ask 

Good luck and keep keeping the faith

Andi xx

I love your spirit Andy keep the fight ! My partner isn't doing so well he's got the tube chemo not working tumour is growing he's got to have 10 blasts of radiotherapy to help him let's hope it slows the tumour down . 
Take care xx 

So sorry Rusty - I'm sure it will work xx