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,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

Thanks Douglas, any true positive stories are a real help at the moment. We'll keep fighting as we have from day 1.

Lee

Hey Andi, hope you're doing OK.

You will get there and be out socialising again ... I've had a total gastrectomy and was out for a family meal in a restaurant in Brighton for my sons 18th birthday at the end of December - and split a prawn cocktail with my Wife for a starter, and ate half a main that was a big plate of chicken arrabiatta pasta (got the other half doggy boxed and took home for later) with a bottle of cola on the side.

Keep going, stay positive, you're doing great by the sound of it.

Hi Redski

Thank you for the encouragement - can eat so little at the moment!!  Still have a very annoying cough!!  I think the dull grey days don't help.   Have just been told that my prolonged hospital stay makes it too late to have post op chemo - so treatment over. 
 

Really happy to hear you are doing so well

Andi xx

Don't stress or worry too much about it, I'm still getting used to the new eating regime too ... and the amount you can eat gets better with time. 
I still struggle with some stuff too ! ... my eyes are obviously bigger than my non existent stomach - so I have to remember to eat slow, chew loads and not eat more than half a usual portion and come back to the rest 20-30 mins later.

Some stuff goes down really well like creamy pastas ... think carbonaras etc work well with me and creamy curry's like Tikka Masala by Charlie Bingham on the supermarket shelves.

Other stuff can randomly cause me discomfort / getting sick with the food not sitting right or perhaps I've eaten it too quickly !

Well done for finishing treatment and getting out of hospital in time for Xmas - was so happy for you to hear that in your update.

Keep going, stay positive !

Hi y'all, 

I am really only trying to come once a week now!!!! Not because I don't'love y'all' anymore, but 2-3 times a day !!! Need to find a 'hobby'(:

Lee- what can I say absolutely keep fighting, but also LIVING, get out there and live it up. I know I tend to be a bit 'over positive' LOL. Do remember that palliative does NOT mean check out time- it means treating a chronic condition when symptoms play up. There are a few around on here that have been palliative with OC , one for at least 8 years and another who was deemed palliative, become disease free after a load of chemo and immunotherapy- so get living xxx

As for me 'dreading' New Year's Eve-  , not really anymore- I kinda expect those expected events on that date!!! LOL. At least I can 'plan' - what else can you do eh!

Welcome  also to two newbies- Tracy and Tipo. The ever expanding oesophageal cancer club x None of us medics on here , just experts in the lived experience of 'living the dream' ask away. Tracy- my husband was diagnosed originally with the same as yours. Ask away- nothing 'off'limits (:

Tipo- you are also pretty much the same as us. My husband 'bless him' , a year post op still doesn't quite get the concept of 'little and often' .Looks like you may only have the post op chemo to do then?
 

Keep keeping that faith my fellow rollercoaster riders

Hilts

Hi all - nice to hear those words of encouragement Hilts, whenever I read a msg like that, it does definitely give us an upbeat feeling (which is greatly needed at the present time).

Tipo - welcome to the forum and walking 2 miles a day is a very good achievement.

Andi-keep practicing that walk to the departure gate!

Redski- nice to hear you're out having a nice family meal...nice choice of pasta

Lee

Hi everyone. Sorry for highjacking the thread but its active and I've read many of your stories and see you're all such a supportive bunch I thought it might be worth reaching out. My dad was diagnosed stage 3 summer 2021 and had flot chemo followed by surgery in October 2021. He's now well into his recovery from surgery but is very tired and sick and still finding it hard to eat anything. He's also been unfortunate to suffer from a deep vein thrombosis in his leg which is really painful and is adding to his discomfort. He is due to start post operative radiotherapy this week but my mum is very worried because he is still so uncomfortable and sick and she fears he's just not up to the radiotherapy and sees him "wasting away" in front of her eyes. He sleeps so much, and whenever I go to visit, he sits with me for a few minutes and then goes back to bed because he feels sick and doesn't like wretching in front of anyone. The oncologist and surgeon are pleased with his progress and surgery outcome, and have offered the radiotherapy to be on the safe side as they didn't find any spread into lymph nodes. What I'm hoping for is any advice or stories about people's experience after surgery so I can tell my mum and dad that what they are going through is all part of it, and that you can come out of it the other side. I've read here about people going on holiday etc and try keep telling them these stories to keep them positive. 

Thanks for the info

Bought a point and press thermometer which works a treat.

First day of chemo was 12th.  He's feeling very cold, tired and a bit sick and is still being fed by tube. I'm feeling far more positive now treatment has begun.  How long before he starts to feel the benefit?   Can he drink while the tube up his nose is in place?

The staff at the Oncology unit are great - so helpful, kind and understanding. 

Next cycle to start on 26th

Hi Distraught, 

Good, your off then- clapping emoji's. Absolutely yes, to drinking with the tube in nose. 
As for feeling better, mine at the start was about a week after the chemo before he felt slightly better, I terms of tumour shrinkage and being able to actually get stuff down, about 10 days after the first chemo, but really really improved after the 2nd - BUT everyone is so very different. Yours may not feel like eating because of nausea and tiredness or just doesn't want to. AS for room for food to pass and chemo shrinkage, again , all so very different, mine's adeno was 'longer' rather than 'fatter', so didn't take much to flatten it to make room. Depends on its 'figure' LOL. Being cold goes with the turf, does improve over time.

HI, BL123, 

welcome to the club, not hijacking at all- public board n'all.

Yes, the post op period is tricky and yes, unpleasant. THe weight just starts to drop off. Mine lost all his weight in this period, up until he finished his post op chemo , about 2 stone in all, his butt disappeared (lol). We are now a year post op exactly , I would say he was really blah until he finished his chemo toward the end of March,then after that well, we booked and went on holidays, got used to the new plumbing etc and eating. So by now a year later he is back at work, weight gone back on ,bought a sport car (lol) and we are booking hols again.

So yes the post op period and treatment is grim and you feel like absolute pants. It feels never ending, BUT IT IS NOT and you do get there, little by little.

So crack on and finish this rollercoaster.

Keep keeping that faith folks

hilts

Hi Hilts and everyone,

Just checking in to see how everyone is doing? 
We did some walks on our visit to the Peak District. I was going to say that the 'Dumping Syndrome' hadn't been happening but unfortunately 'thought  too soon'! Husband is really trying to gain some weight whilst I'm trying to loose it lol. Seriously it does seem difficult for him but he has managed to gain 3lbs. I've read it usually takes time around a year? He's doing very well overall and he's managing the beer Hilts! 

Distraught - hopefully you are feeling less distraught - yes I agree with everything Hilts said. My husband used to take his own drink/food for the day but they did provide warm drinks and sandwiches etc. The cancer nurses were brilliant. He also took a snood and gloves and wore them when the oxiliplatin was given. It did affect his throat but not badly. Hope all goes to plan tomorrow.

BL123 there are patients who get through this very tough time and come out the other side. My husband had FLOT/OP/FLOT so not sure about radiotherapy but I know it is offered to some patients. Every case is unique but my husbands path took an unexpected and unusual turn a week after the op which resulted in complications not to do with the initial operation which went well. He made it though and yes we've had a few breaks away in cottages in the UK. Home from home with no pressure to do anything if you don't feel able to but just a change of scenery makes such a difference.

There are others on here who have come out the other side.

Anyhows hi to all and thinking of you all and your families.

keeping the faith for everyone 

Milly

Hi Hilts and everyone,

Just checking in to see how everyone is doing? 
We did some walks on our visit to the Peak District. I was going to say that the 'Dumping Syndrome' hadn't been happening but unfortunately 'thought  too soon'! Husband is really trying to gain some weight whilst I'm trying to loose it lol. Seriously it does seem difficult for him but he has managed to gain 3lbs. I've read it usually takes time around a year? He's doing very well overall and he's managing the beer Hilts! 

Distraught - hopefully you are feeling less distraught - yes I agree with everything Hilts said. My husband used to take his own drink/food for the day but they did provide warm drinks and sandwiches etc. The cancer nurses were brilliant. He also took a snood and gloves and wore them when the oxiliplatin was given. It did affect his throat but not badly. Hope all goes to plan tomorrow.

BL123 there are patients who get through this very tough time and come out the other side. My husband had FLOT/OP/FLOT so not sure about radiotherapy but I know it is offered to some patients. Every case is unique but my husbands path took an unexpected and unusual turn a week after the op which resulted in complications not to do with the initial operation which went well. He made it though and yes we've had a few breaks away in cottages in the UK. Home from home with no pressure to do anything if you don't feel able to but just a change of scenery makes such a difference.

There are others on here who have come out the other side.

Anyhows hi to all and thinking of you all and your families.

keeping the faith for everyone 

Milly

Hi Milly - good to hear from you. I hope everyone is doing well - a grey and gloomy time of year. I have been told that it's too late for my post op FLOT - as now nearly 4 months and my oncologist said it needed to be given up to 9 weeks after op!! Bit gutted as it's the 'belt and braces'!! Has anyone else not had the post op chemo??  I now have my feed line out - can soak in the bath - blisss!! The thing I find hardest is sleeping 'sitting up'. I'm hoping to go to Scotland in May - hope I'll be OK - at the moment I'm feeling quite sick - but hopefully it will pass  - any tips always welcome  

Keep smiling

Andi xx

Hi Andi,

Lovely to hear from you and good news that the feed tube has gone! Re chemo it's strange as my husband was offered it 12 weeks after the operation. His oncologist said it's usually given between 6 - 12 weeks after the operation so he was just within that timescale. 
Regarding sleeping we invested in an electric bed as we had ordered a new bed which due to COVID hadn't been delivered and then Kev was diagnosed etc. You do get the VAT taken off due to it being a medical need. 
My husband also bought a wedge pillow off the usual internet shop! He has found this comfortable too. Also an inflatable one - so all bases covered lol. 
A trip to Scotland sounds wonderful! 

keeping the faith 

Milly

Hi Milly

i think it's just too late for me to have chemo - as was in hospital for 10 weeks and still too weak to have it. I'm sure things will be OK!!  I have a wedge 'pillow' which helps. - will look for an inflatable one - thank you. I have thought about the electric bed - I'm sure it would help. 
 

Thanks for the tips

Andi xx

Hi Andi,

Sorry to hear your out of the window for follow up chemo, I visited my surgeon last week and he said oncology want to give me post FLOT however he said he felt that I don't need it as the operation was a total success I'm recovering well and more chemo means taking a step back.

I did ask why they thought more chemo was being recommended, he said that apparently I was in the 20% of people who have an excellent clinical reaction and it's not often they get a patient of whom post chemo gives increased chances of reduction the potential of recurrence

now I'm not sure if that's BS but he said it would improve my chances by 4-6% I've got appointment with oncologist to discuss further as we all know chemo is nuclear 

my operation was 9th November, so we are 13+ weeks and consultation next Tuesday 

I'm eating well, walking between 2-6 miles a day and back at work, I'm managing well just not keen on taking any steps back, just want to crack on with life 

Tipo x 

Hi Tipo

That's very interesting - they told me post chemo would increase chances by 5% - about the same - and knowing how awful the chemo is I really don't think I'd have wanted to step that far back. Please let me know what your oncologist suggests!! I' m still breathless but improving a bit and couldn't have full dose!!

Great to hear you are doing so well - my op was in.  September - and it's taking ages 

look forward to an update 

Andi xx

Hi y'all.

I am trying to be 'good' only coming on once a week. Difficult though. Been very quiet again on here. Hope everyone is trooping along.

post op chemo- sometimes it would be so much easier if they didn't give us so many 'options'. !!
I know Doug didn't have the post op juice. Mine did, but didn't actually'need' it due to good histology. 5-6% is quite low in terms of improvement in risk. and as we all know too well no guarantees in this life. Everyone on this earth has risks and all of us have the risk of cells going bad. It really is a case of damned if you do, damned if you don't. However, if you are feeling good and recovered/ing, and the clinical advice is 'don't bother' then I guess they are saying go and live.

Mine is still having trouble with the coughing- it is soooo random. Not related to the bowel drifting upward and haiatial hernia still all fixed. Our lovely consultant was like "right, that's it, I am determined to get to the bottom of this"- we know it is not dodgy and it is down to 'irritation' and most certainly down to reflux, but how to stop it is the problem. They are thinking barium swallow to see where the fluid is going when causing irritation if that makes sense. Very common......apparently. Luck of the draw and how new plumbing behaves.For us extremely annoying, but y 'know after all the other stuff, minor in comparison.

Other than that, what to say. All good. The recurrence 'fear' is starting to become less bothersome, we know it will always be around, but less anxiety provoking

Anyway

until next week

keep keeping that faith

Hi Hilts and everyone,

I hope your husband's consultant sorts out the nuisance cough. Be interesting to know what percentage of patients have this type of ongoing annoyance. 

My husband sees the Consultant oncologist next week for his 'check up'. Fingers crossed he is doing well. He has been to the local gym for the first time since diagnosis. He has taken part in the 'Active Recovery' NHS program since diagnosis apart from during treatment/ operations!

Fingers crossed we get to Tenerife at the end of March!  

Also I thought I'd mention he was contacted by letter from the hospital to offer him a fourth jab which he has opted to take. It was because he was immunosuppressed when he had previous jabs.

Very quiet on here which I hope is a good news as I think of you all on your respective paths. Sending healing hugs and caring thoughts.

keeping the faith

Milly

hi Hilts 

on the  ittitating cough situation mine has all but gone since i started regularly rinsing out my sinuses with Neilmed saline sinus rinse dissolved in warm water every morning , my voice has also improved and is as loud as ever which is good as i am prone to roaring and shouting according to my friends , i just realised my irritating cough had gone after reading your post and i have been using the rinse for about 3 months  you can also use household salt dissolved in warm water and a syringe so i was told by an ENT consultant , might be worth a try , anyway take it easy and hope you are both well.

Regards

Douglas

Hi All

My Husband had the Ivor Lewis op yesterday.  All went as planned they said.  Had to take quite a lot of his oeasphagus away the surgeon said. 
Struggling to get on top of his pain at the moment, in particular his right shoulder blade, anyone have experience of shoulder pain post op. I know it's early days, but he was so distressed when he spoke to me earlier.  Feel so helpless.

thanks

Tracy

Hi Tracy

yes the shoulder pain is common and was the only thing i remember asking about in intensive care and i was told it was directly linked to the surgery and it had all but disappeared by the time i was discharged    one thing to mention is the initial weight loss  which also means loss of muscle mass i am 2 years on now and just starting to regain mine  , anyway take care and feel free to ask about anything there is a wealth of post op non clinical knowledge on here.

Regards

Douglas