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 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 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 !

Hi everyone,

Just thought I'd say it's a year today since my husband's Oesophagectomy. As those who have been with us on this journey know it was a snakes and ladders board for a few months but a year on from the original op so far so good - fingers crossed.

Keeping the faith

Milly 

That's brilliant news. I wished my partner had the option to have an operation, sadly he's stage 4 incurable . At the moment he's in a lot of pain as he had a stent fitted. But because the tumour is so big it's pushing it causing him a tremoudous amount of pain. 

I prey and wish for him I do . 
 

Good luck to you both of you on your tough journey.

I wish a positive outcome for you both. 

Take care x 

Hi Milly

That's great - gives us all hope   I'm 7 months now - up early as have early CT scan today - third appointment this week but off to Scotland for 2 weeks tomorrow.  If I cope with that OK I think I'll be brave enough to go abroad   Still very breathless but slowly improving

Thank you all for the encouragement and support xxx

Andi xx

Hi Rusty1,

Thank you for your kind words. OC is such a terrible diagnosis. I hope your husband can access some better pain management. Has he been offered chemo?

Keeping the faith 

Milly 

Hi Rusty1,

Thank you for your kind words. OC is such a terrible diagnosis. I hope your husband can access some better pain management. Has he been offered chemo?

Keeping the faith 

Milly 

Yes he's on chemo . It's a new one now , to help it shrink 

fingers crossed  

Take Care . 

Hi Rusty1,

The chemo my husband had was FLOT. He noticed a difference by the second cycle. Most people on this forum noticed a reduction from having the chemo so as you say fingers crossed.

keeping the faith 

Milly

Hello  

Yes, Millie he did take FLOT, the first time around for 13 weeks . There was a difference as he was eating, we were going out for meals. But then he unfortunately started to feel blocked again. So we contaced his oncologist and she suggest the stent. He's had lots of pain since having it fitted, because as the tumours growing it's pressing against it causing him to feel pressure in the chest. He described this as like being suffocated. 
it's been awful for him . And I've felt helpless seeing him in pain. 
He is going to be taking his 2 nd chemo (camto) on Wednesday . 
I hope and pray it will start to shrink it .
Thank you for listening xx 

Take care ️

Hi Rusty1,

Hopefully the chemo will shrink the tumour and improve his swallowing, eating and ease the pain. Presumably the hospital will review the stent? We are hear to listen and we are a supportive bunch . We all have different stories. Some are patients, others family members. Just remember everyone is unique and some on this forum who have defied the odds. I have a friend with Bowel cancer who was given 6 months and is still on treatment 5 years on.

I do realise that one word - incurable - is absolutely devastating but sometimes it can be controlled. I wondered if you had both been given the opportunity to have a holistic assessment by the Upper GI team. We had one and this led to emotionally support for me as well as Kev (who didn't think he'd need it but has used it). I must say the team were very supportive and I accessed a local palliative care nurse during the time between Kev's extra operations. 

keeping the faith for everyone 

Milly

Thank you for the advice xx 

will look into it .