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.

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 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 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

Hi Tracy,

Firstly I'm so pleased to hear that your husband has had the operation and it has gone as planned. That is such a huge statement. I hope you are able to visit him - I wasn't at the time due to COVID restrictions.

My husband said yes it's painful but the pain relief is good. He was on pain killers for a longer time than most due to having 2 further emergency operations. As we always say on here everyone is unique and pain levels vary in people. However it is a common feature of this type of operation. My husband is now off painkillers.

It's very early days after a mahusive operation. Better to take all the pain relief offered. Take one step at a time - it's a long road but people do come out the other side. 
 

i wish him and you a steady path to recovery. As Doug said lots of experience on this thread.

keeping the faith 

Milly

Hi 

So pleased the op is over Tracy - recovery is slow and steady. I still have very slight shoulder pain and have lost a lot of movement in my right arm - but it doesn't restrict me at all - there are ways around everything   I really cried laughing the other evening - I tried a shift dress on as weight loss meant I may get into it again - it looked good!! But due to lack of arm movements, I couldn't get it off!  Ended up cutting it off  - would have made a great comedy sketch - just have to laugh!!

Anyway - I have a question!!  I quite often still feel discomfort when I swallow - not all the time - feels like swelling in my throat!!  Anyone else had that??

Seeing consultant next week and will mention it - but thought I'd ask. 

Happy weekend

Andi xx

Thanks everyone for the replies. 
unfortunately no I can't vist because of the Covid. Makes things twice as bad not being able to visit. 
long road ahead.  Keeping everything crossed, for good biopsy results.

thanks

Tracy

Hi Andi 

i have had the same problem with the lifting your arms high enough to get a tshirt or jumper on and off for the first seven or eight months , i also had the dreaded bingo wings but now i am at the gym i have managed to sort the muscle loss problem , i am still working on the turkey neck if anyone has any tips let me know , anyway take care as always.

regards

Douglas

Hi Andi,

Good to hear from you! You made me laugh re the dress!

My husband has been part of the NHS Active Recovery Programme that has been on zoom. They do a gentle chair exercise one day and a slightly more energetic one on another day. Maybe worth asking the consultant if your NHS Trust does something similar for cancer patients? Do you swim? Doing gentle exercises in the pool with the support of the water may help?

Your team know you so they would be the best people to ask re your arm and swallowing. I know some people need a small procedure to stretch the oesophagus sometimes due to scar tissue forming.

You have come such a long way since your op and extended weeks in hospital. Well done! I guess if someone had told you when you were very poorly about your dress episode you'd have found it hard to comprehend that you'd be trying a dress on let alone cutting a dress off! Lol.

Hope your appointment goes well and they give you some help/advice.

keeping the faith

Milly
 

Hi Tracy,

Yes it does make it difficult not being able to see your husband. I must say the Consultant Surgeon and ICU staff were very good at keeping me informed but still not the same as actually seeing them. He did get his mobile back after a couple of days but the Wi-Fi was useless so only managed a FaceTime once during is extended stay. Hopefully your hospital's Wi-Fi is more reliable!
 

The time will pass and he will be extremely busy with all the care they give. My husband can't praise the staff enough for their care and compassion. Yes fingers crossed for good biopsy results - it's a very tough time for you all. There are positive stories and my husband is doing well so far (fingers crossed). We are thinking of you and sending healing and positive thoughts your way.

keeping the faith

Milly
 

Hello y'all and to Tracy, 

Gosh we really are all moving on. I am no longer 'checking ' every day for posts, just one a week.

ye, the cough arrrg. What to,say, I do think some it is 'psychosomatic'- I know myself, if I think I'm in a situation where I really don't want to coughing- well guess what. And I know that once you start , it is really really difficult to stop! I wonder if that is why the beer helps, relaxing the old brain etc. 

MIllie- you WILL get to Tenerife, those bones need to be warmed, We are off to US in April , come what may (:.

Tracy- yep, oesophagectomy is about as massive as It gets, they take away most of it. Pain after is compulsory, but mine had one of those self administered pumps and had top up opiated etc. The right shoulder pain is a fascinating one for many reasons. I was a nurse back in the day (left 1990), when laparoscopic surgery was just taking off and right shoulder pain was par for the course and it was always down to get this - wind- trapped and making a nuisance of itself. Of course all laparoscopic surgery involved pumping patients full of co2 , so they could see inside. Mine had laparoscopic oesophagectomy so FULL of wind. Even though Ivor Lewis in not laparoscopic, he would have been seriously pulled about, lung deflation, turned over, bits and pieces moved about,his body will be well miffed. so yes, pretty normal, but unpleasant nonetheless. On top of pain, there is the added 'bonus' of discomfort, being in the same positions etc, BUT, as you move and heal it gets better and better. Mine was pain free totally after about 3 months.

As for visiting and covid. Still a total pain. I was allowed in (dec 20), but then hysterics started again and was no longer allowed in. Honestly, this really does need to move on now- if one has a negative LFT, then why on earth are visitors not allowed. Not masses, but just one blooming relative. 
Anyways folks, until next week

keep keeping that faith

Hilts.x

Thank you all, means a lot knowing I can come on to this forum and express my worries.  
You  all are a very supportive  bunch.  I will no doubt be asking more questions. But for now all take care. And keep living life to the full.

Tracy