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

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Hi Poppycake,

I am sorry to hear you've had some worrying news. I'm afraid none of us on here are medical experts and I haven't had experience of this type of bleed so unable to  offer any advice. The best people to talk to are the doctors. I'm glad you are able to visit so you should have access to speak to them more easily. I have to say my husband's surgeon and team were excellent at keeping me informed but very different over the phone. 
 

I hope you get some answers and your dad stabilises.

Keeping the faith

Milly

I am off to hospital on Wednesday at 0700 hrs for my operation (Ivor Lewis) scheduled for 0800 hrs. I don't mind saying I am a little scared. The surgeon has not spared any details of what the outcome can be, so I am hoping for the best  

Will get back on here when I can to let you know how things are going.

Trying to keep the faith.

Snaggie

Hi y'all, 

well, take 2 weeks off and what a flurry! Now I'm back - where do I come - HERE!
I see I come back to a mixed bag.

BFG- mmm , what to say, not a lot, sometimes those ***** cells  don't seem to get the message that they need to do one ! Don't you think of going off anywhere anytime soon and keep us up to date on your progress, we are all a bit 'thick as thieves' on here and have rode this coaster with each other. Sooo.

Mahnfy-How to put this simply- chemo is foul.  You could be describing anyone of us on here. It is unpleasant at best. Yes, to most of what you've said. My husband was never actually sick, but the nausea was so bad that he had to have several reviews of his meds, finally the did work a BIT, but it never really went. As for other side effects and calling the response team , yes and yes. He had the lot , including a proper anaphylaxis!! We called the rapid response about 5-6 times for various things like temperature, blistering, tingling hand and feet, the list is endless, but guess what- all to be expected in this cell murder game ):. He was on. 14 day cycle. 4 pre op and 4 post op.  At his worst day 3-7 and then gradually getting over it before ground hog day again and again and again......As for the amount of tablets! Wow, probably about 20-30 a day at some points and a permanent/ in dwelling IV line for the whole 8 weeks and then another one for another 8 weeks. So you guys sound completely NORMAL. 
 

Who mentioned chest infection/ pneumonia- oh yes. I think everyone on here has had this to varying degrees it is pretty 'common' after the type of surgery that is done, the lungs are really not best pleased about being deflated all have been treatable. An induced Coma / ventilation is as good a place as any for the body to be treated and gives it a bit of a break to focus on recovery. Seriously scary for the watchers, take a while to wean the bod off it too, but several war wounded on here have lived to tell a very good tale of recovery.

It feels a bit crass to tell you what we've been up to, but it has been another piece of the 'moving on' ( for now!) jigsaw. 2 years ago we booked a no holds barred trip to Florida, to do all the bonkers things there. Then covid hit, our trip got cancelled and then just to put the icing on the cake the OC diagnosis followed. So to complete the circle (for now !) I was damned determined that we would go at some point- so we did and came home today. He did it, went on the most revolting sick making coasters and rides- if he got through chemo, no ride could match that nausea! Tramped around the parks in 90deg heat, ate utterly 'appalling' , so called 'unhealthy'  food (lovely food, we love), of course helped along by beer. I am so very proud of him, he was worried before going if he would be up to it , but he did it.

Off to bed now , as a red eye flight overnight.

keep , keeping that faith

Hilts

Snaggie

You can't hide from the fact that it is a scary op - you will be in the twilight zone for a couple of days in icu then back into the ward. They'll have you up on your feet before you can blink to get those lungs pumped up and working.

And as you'll find on this chat, we've all made it to the other side - some relatively straightforward, others with some complications on the way but superbly managed by the team that will be looking after you. 

You'll be on soft jelly and ice cream (yay!) then minced and moist (sorry to bring back memories for the others on this chat) before being sent home. 

But the important thing is that we've all been through what you're about to go through - so don't be hesitant in coming forward with the most ridiculous sounding or gruesome questions.  And don't be surprised if it takes ages to type out a question or response - it took me  a ridiculous amount of time. Post op I only communicated with my partner and she communicated with everyone else - it saved a lot of time trying to update everyone. 

We'll be with you in spirit!

Cheers

BFG

Will be thinking of you Ivor - keep keeping the faith xxx

Hi Snuggie,

I hope your op went to plan and you are beginning to recover. Early days I know but the NHS staff are so dedicated. Please post when you feel able to. Sending healing hugs and positive vibes.
 

keeping the faith

Milly

Hi Hilts 

II'm so pleased to hear that you all had a fab time in Orange County! Florida is certainly a place to live the dream and after the nightmare you've all had a refreshing change. Well done to your husband and it's such a positive outcome to post. We all know that OC is horrendous and everyone has a different journey and outcome.  Like you,  I feel almost guilty posting about holidays ibut it's in the hope it helps give people hope if that makes sense.  4 pints kept me going in my darkest of moments and swimming in the north sea lol.

We went to Tenerife but ours was definitely a chilled holiday but nonetheless a brave thing for my husband to do after all his 'extras'. I have also celebrated a milestone birthday! 60 years! So happy to reach 60 as my mum only got to 51 and her mum 49. My best school friend 54 band as you know our youngest son didn't even reach his first birthday so as we all know nothing in life is guaranteed. Our two sons and eldest son's partner took us both away to Shrewsbury for the weekend which was great and Kev and they had arranged a surprise party for my birthday yesterday which was so special to be with  family and friends who have supported us through tough times and not just the latest event as well as the good times. 
 

Hope the reality of washing and school/work isn't to much of a bump back down to earth! 
 

keeping the faith (which still helps me)

Milly

Hi BFG,

Goid to hear from you. I hope you have found some answers to your questions too. Sending healing hugs and thoughts.

Still keeping the faith for everyone 

Milly

Hi Millie, 
Glad you got away too xxx. I need another holiday now, and don't talk about the washing!!!! and back to school chaos arrrg. But these days I kinda don't mind getting a tad wound up  by the to'ing  and Fro'ing of daily life, considering what we've been through, but I am quite glad (for now) to be growling at trivia!

Orange county was indeed full on !! We all went on vomit inducing rides- arg. He 'lovingly' reminisced that old chemo made him feel worse! Nothing was as bad as that he claimed- children of course just shook it off. Me, Well let's just say NEVER, EVER , AGAIN! I really really never ever want to go on another rollercoaster ( including this one (:
There we're absolutely no covid restrictions whatsoever across the pond, which for me/us is great, I popped into a shop on return ,as you do ,for milk and wondered why people were wearing masks! Being away made it almost feel like the last 2 years never happened! 
I also feel a bit weird posting good stuff, but like you, I hope it offers others some kinda hope that things can be okay (for now- I always have to say that, tempting fate n'all) 

Hope you gave your bones a good warm up. I certainly did-  a real good ginger tan- freckles, bites & blisters ! I do love the US , everything in pounds, Fahrenheit, feet etc. they were complaining about 'gas' being 3 dollars a GALLON! If only.....

Anyhows, schools out and tea needs doing.

take care and keep keeping the faith

Hilts

Hi Milly, hope you're well.

Did you mention your Husband was part of a patient support / mentoring group / programme now ?

If so, is it NHS and do you know what it's called ?

Thank you !

Hi Milly, hope you're well.

Did you mention your Husband was part of a patient support / mentoring group / programme now ?

If so, is it NHS and do you know what it's called ?

Thank you !

Hi Redski,

Nice to hear from you and I hope you are continuing with your recovery. Yes he is the patient representative for the pre hab meetings which Involves different representatives that are involved in the cancer pathway treatment. It isn't mentoring. I'm sure you've heard of the Oesophageal patient society which may offer mentoring.
 

We have also been fortunate to access a specialist cancer  clinical psychologist who has really helped with the emotional trauma of such a huge operation etc. Maggies  charity can offer counselling.

My husband has a mentor through a friend of a friend who had the operation 3 years ago and went back to work after 9 months to his job as a police officer. He's had ups and downs but is still working and getting on with life.

Hope this helps??!

keeping the faith 

Milly

Hi Milly, thank you for the comprehensive response - it certainly does help.

I want to offer to help doing similar, but wasn't sure what to ask for or call it when speaking to my CNS to put myself forward and offer the help, encouragement and insight to others starting out and walking through the journey.

So I know now to offer it up as a patient representative for the pre hab treatment - thank you !