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 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

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