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 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

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

Hi Back again,

Ive had my review with both the surgeon and the oncologist and both have stated that there was no need for me to have post op chemo.

From the research they believe the most efficient method is Pre Op Chemo FLOT and then the Op, there was very little evidence to show that post op would have any material effect.

They did say that if they gave me any more chemo it would make my neuropathy (nerve damage) and its wouldnt be worth the risk, they will continue to keep me monitored.

My operation was 9th November and I'm recovering well, back at work and walking the dog. I can eat almost anything, however smaller plates and not eat too late.

Ive been asked to go onto the aspirin trial as they believe aspirin can help stop cancers returning, fingers arms nd legs crossed thats the case.

Wishing my fellow OC's the best of health and to those that are new, yes its scary but there is loads of support out there and you will come through just like me.

Regards

Tipo

hi Tipo 

that's good i have been on the adaspirin trial since November 2020 its aimed at preventing bowel cancer only downside has been any shaving cuts and i am bleeding like the proverbial sheep lol , i have learned just to be more careful !! , i like you didn't need the post op chemo , take it easy.

Regards

Douglas