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.

Fantastic news and well done for getting through your treatment so bravely. Its not easy, my husband is only on round two of eight EOX chemo, and is completely wiped out, has hardly made it off the sofa for a week and half. Wishing you lots of luck for your surgery, and recovery afterwards! You have got this. 

Hi Daisy

Thank you! I was kept going will regular snacks, fruit smoothies, banana milk shake still my favourite and even an odd glass of lucazade, anything to give me a boost when i felt at my worst, kjeep strong both of you and stay positive it has certainly helped me.

Yay, Ray- good to have you back.

great news that the FLOT has done its stuff. It really seems to be the proverbial dogs b****s

you read exactly like my husband. He felt it was like Groundhog Day. Every fortnight Thursday night start the steroids, get nuke'd on the Friday, stop steroids on the Sunday, blotto for 3-4 days then better every day until time to go again.

He had all that pre op fitness workup. Lung capacity expanding stuff, bike ride 'stress' test, nose clip etc.

Mine is now post op. Had the whole thing done by keyhole!! OMG is that genius of a surgeon, my new best friend. He was only in for 7 days!!! 4 bullet holes, that is it!!!They chucked him out xmas eve, best present ever. He is now adjusting to eating smaller meals haha haha, not liking that one bit. Interesting though , in the 4 bedder with him were 4 guys similar ages all had the same diagnosis, surgery etc etc. What is going on with Oesophageal cancer, it seems 'catching' He still has his jejunostomy feeding tube in, but stopped them overnight last weekend.

We recently had the pathological final staging. Gone down from a 2 to a 1b, clear margins with no lymph's. Surgeon said there was very little cancer left, mostly scar tissue. So we are now waiting to hear on whether he needs the post op chemo- we are expecting it -in for a penny and all.

The whole thing seems a bit 'surreal' we are almost there in terms of treatment, but the emotional impact will take a lot longer to work through.

Hilts, So pleased to hear your husband is doing so well post op! Fantastic news about his grading, and you sound so upbeat its lovely x

Hi Daisy, 

yep, it is weird, I feel very upbeat about his treatment  and it has all gone so well BUT- there is always one (: I am waiting for bad news, I am also very intolerant of other things, life in general, you know stuff like getting stuck behind a tractor, annoying adverts, other people in general (: deliberately  emotive charity ads, and all that identity politics arrrgggg watching one of those *** programmes on TV at the mo as the 'screech sirens blaring' to an 'emergency', which turns out to be a drunk on a bench, love in a public toilet ( perish the thought hahaha)or minor theivimg ,really a blue light emergency!!!!- I could of course switch it off, but hey ho. Moaning at it is far better.One thing that is really dragging me down at the mo, is my idiots of bosses, changing their mind every 5 mins. I am particularly angry at our hysterical media, they *** off the NHS day and night, claiming horror stories at ever turn, but our experience has been amazing, seeing none of what they are banging on about.

I guess it might be called 'displacement' , who knows. The psychological will be a lot more difficult to heal I suspect.

hi Hilts

hope everything is going ok , everything has gone quiet on this page 

kind regards

Douglas 

Hi Doug, 

it has gone all quiet on here. I always think it means 3 things 1) we are all trucking along and are in reasonably good places. 2) We are mid treatment and crawling through a surreal twilight zone or 3) We all have popped off!!!- i have nightmares about 'chatting' on a thread only to find the person has checked out!!.

As an ex nurse I have always had a rather dark sense of humour, then this diagnosis, we'll if you can't laugh what can you do eh!
Anyhows, we are quiet, because we are good. Recovery continues, although he has a nasty 'rash' on his gut- not the wounds, I reckon it is an allergy to all the tape n stuff, annoying rather than problematic. He is walking much further now and is back driving

Food ' discovery' is going well. He is managing to hang on to weight, only lost 6lbs since August. He even managed ( I told him not to!) eat a pie!! - left off the mash, but plenty of gravy and ate the lot!!! I despair sometimes- he only got (this time) a slightly raised heart rate. He was very pleased.

Oncology appointment on Wednesday, to discuss if any further chemo needed. We are expecting it, despite the good pathology. In for penny and all that.

Will update then. 

hi Hilts

thats good to hear , anyway i am also doing great no more hospital visits until June you both take cars and keep in touch

Regards

Douglas

hi RayB

i just seen your post , i was wondering what had happened to you , i am gladf you coped with the chemo  and are getting your surgery soon , as i mentioned before its nothing to worry about ,if i can cope with it anyone can , the whole hospital episode just whizzes bye and before you know yit you are back at home , anyhow take it easy and keep us updated during your recovery.

Regards

Douglas

Hi Douglas

Nice to hear from you,I was at the hospital on friday gone and met the surgeon and team members my operation has been put back a week due to the COVID crisis.Yes taking it easy lol will stay in touch.

Regards

Ray

Hi Douglas

Nice to hear from you,I was at the hospital on friday gone and met the surgeon and team members my operation has been put back a week due to the COVID crisis.Yes taking it easy lol will stay in touch.

Regards

Ray

Hi Rayb, good to hear you are ok. My husband is due to have his third EOX cycle next week (delayed a week due to unpleasant tummy side effects) his appetite came back slowly this week during the break, and he is managing to get some soft foods down, we actually had shepherds pie dinner together last  night woop woop! 

I love hearing everyones updates, this is a difficult time for everyone, more so for cancer sufferers and its good to talk, and be in it together. Take care everyone. 

Hi RayB and Hilts

Just thought i would add a picture of me taken today 7 months post op as a positive piece of encouragement that things will return to normal over time rather than looking like you had escaped from somewhere , chin up everyone and keep posting.

regards

Douglas

Good to see you looking well Douglas  

my husband has had a weeks break from his chemo meds, and is already feeling more energy, more appetite and this has inspired us that he will only feel so awful during treatment but that at the end he will hopefully recover well, as you are. 
 

Hi Daisy 

thanks i just posted the photo to show that your hair does grow back and that the wrinkles sunken eyes and hollow cheeks do eventually start to fade , i know it can be quite a shock to friends and family the changes to your appearance during treatment and a wee bit distressing  as you wonder is this it for me , it did stop me going out in public for a few months but hey ho thats in the past and people recognise me easily now altough i still am 18kg lighter but all the better for it , anyhow if you need any support during your journey  just ask as i have told others i am happy to help, take care and god bless.

regards

Douglas 

Update from the front line!
hi all, 

Went to see oncology today for next phase. Told us that he is disease free yay,pathology and response to chemo was all brilliant. BUT, there is always one!. They have said that standard treatment is now to give 4 more FLOT. The reason being that some of the clever little f**kers maybe hiding somewhere or are so small that they are undetectable, so just in case they have plans of setting up home they nuke them.

We were expecting it, so not a shock, but we are trying to get our head around that this is actually good news!
He is quite 'upset' about going through another 4. I really get what he means. It will soak in for sure.

Hospital described it as a standard offer and belt n braces.

So good, but we feel a little deflated 

Hi Everyone,

The big day arrives on Tuesday, being admitted on Monday just wondering what people took into hospital to keep occupied, or what they wished they had taken in? Secondly did anyone have a change in there voice after the operation. Because of covid im trying to take in as much as possible as there are no visitors allowed. Been advised i will be in at least 14 days, so any tips, advice greatly appreciated.

OMG Ray, 

I was just thinking about you ! I was thinking about your op and birthday!!! Don't worry though, not a pervo/stalker!!! I was coming on to post to you and there you were.
 

Anyhows- what to take in?. He took in a book, pants n t- shirts- that was it. - he was in a gown for 3 days.Small toilet bag. and essential ear plugs- quite noisy in there.TBH he had no time to do much. Between post op physio's getting him up & walking the ward,the next day and everyday after. He slept a lot. He also chatted with the blokes in the ward, who were all having the same op. I did take him a paper in everyday and a latte after day 3. They chucked him out on day 7! Probably on the early side as it was xmas eve! Your phone, charger and headphones= essential. We also did Skype calls for kid purposes as only one visitor allowed.

No change in voice, but an annoying cough. Which improves hugely with his chemo Dex.

He had a great histology and is now doing the post op chemo. Which of course is great fun.....  not. He is even almost mastering the post op eating- he's managed curry, pie n mash, gravy dinners etc. At the start is was all mush, but by week 6 he was on everything. He gets dumping ( what a surprise), but I really getting to grips with it.

So , good luck Ray and a 'happy' birthday. Getting rid of the *** will be the best present.
 

Wishing you all the best of luck for your op Ray, do come back and let us know how you are getting on when you feel able to do so! We are all rooting for you x

Thank you for your comments and advice, will keep you informed of my progress.

Hi Ray 

we are all thinking about you today , i am sure all will be fine and look forward to hearing how you are doing in weeks to come , take care

Douglas