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 Hilts

Thank you for the very encouraging message - always uplifting. I'm sure your hubby deserves and enjoys his beer!!  I have found that Baileys 'slips down' so really enjoying the odd glass or three. 
 

Andi xx

Spoke too soon, the feeding line got blocked so he's back in hospital for a replacement to be fitted.  Hoping this doesn't put his chemo plan in jeopardy.  

Not quite past the distraught stage yet and I genuinely don't think I will be until he starts the FLOT treatment.  I know it's going to be a difficult journey for him and all our family but can't wait for the treatment to start to begin his fight back against this horrible disease.

Seems it's not unusual for feeding by tube, judging by other posts.  Currently the tube is in his nose, squeezing past the tumor and into his stomach.  Are the medics likely to fit him up with a direct line into the stomach if this turns out to be a long term arrangement?

Here's hoping my distraught soon gets changed to something more positive.  I will try to think of something suitable.

Hi distraught 

on the subject of feeding lines the one you get post operation known as JEJ goes in about 4 inches to the left of your belly button and into the small bowel or jejunum it is easy to maintain as its quite short but needs flushed out with sterile water after use , i had mine in for about a couple of months , i think it can only be fitted during the surgery though , take care now

Regards

Douglas

Hi all, not so good news today.

We had a meeting with the oncologist (first meeting post surgery). He confirmed that although my Dad had had a successful esophagectomy 7 weeks ago, the scan has shown it has spread to the liver and probably also in the blood stream and maybe lymph nodes.

As you can imagine, this is really hard to take - a feeling that we always had but one that we hoped wouldn't happen. 

The oncologist has said the plan is again palliative and the chemotherapy will start again in 2 weeks time after my Dad has strengthened more. 

I guess we are back somewhere near the start of this journey again, back in August 2020.

Lee

Hi Lee,

That is tough news to take on board.Very difficult for your dad and all of you. I'm not sure what to say other than they are continuing with treatment and hopefully chemo will keep it in check and your dad can build his strengh. 
I appreciate you letting us fellow travellers know as I certainly feel a connection to you and your dad. 
 

keeping the faith for you all

Milly

Hi - my line has been in since September - and will be there for another couple of months - it's very easy to look after xx

Hi Lee

So sorry to hear about your dad - keep strong

Andi x

Hi  Andi 

my line was never a major problem either, i got large clear waterproof dressings from the nurse which were great for showering , the only nuisance was the brown waxy stuff that stuck to any body hair around the wound and the stitches , mine eventually fell out completely in the shower one morning but i was assured it would close up within a few hours which gladly it did , using it was more a nuisance than anything else , take it easy.

regards 

Douglas

Hi Douglas 

I agree - it's just a nuisance - I now 'plug-in' when I go to bed -I was doing it during the evening. Will be very glad when it's out!!

Andi xx

Hi Leechap 

sorry to hear your journey has taken you down a more difficult road and i hope the palliative treatments provide your dad with good results , surprisingly i bumped into a fellow patient last week with who i shared a ward with in hospital and has been getting ltreated for liver cancer for over 2 years and he is still receiving treatment as we speak , anyway take care.

Regatds

Douglas 

Hi Leechap 

sorry to hear your journey has taken you down a more difficult road and i hope the palliative treatments provide your dad with good results , surprisingly i bumped into a fellow patient last week with who i shared a ward with in hospital and has been getting ltreated for liver cancer for over 2 years and he is still receiving treatment as we speak , anyway take care.

Regatds

Douglas 

Thanks Douglas, any true positive stories are a real help at the moment. We'll keep fighting as we have from day 1.

Lee

Hi y'all, 

I am really only trying to come once a week now!!!! Not because I don't'love y'all' anymore, but 2-3 times a day !!! Need to find a 'hobby'(:

Lee- what can I say absolutely keep fighting, but also LIVING, get out there and live it up. I know I tend to be a bit 'over positive' LOL. Do remember that palliative does NOT mean check out time- it means treating a chronic condition when symptoms play up. There are a few around on here that have been palliative with OC , one for at least 8 years and another who was deemed palliative, become disease free after a load of chemo and immunotherapy- so get living xxx

As for me 'dreading' New Year's Eve-  , not really anymore- I kinda expect those expected events on that date!!! LOL. At least I can 'plan' - what else can you do eh!

Welcome  also to two newbies- Tracy and Tipo. The ever expanding oesophageal cancer club x None of us medics on here , just experts in the lived experience of 'living the dream' ask away. Tracy- my husband was diagnosed originally with the same as yours. Ask away- nothing 'off'limits (:

Tipo- you are also pretty much the same as us. My husband 'bless him' , a year post op still doesn't quite get the concept of 'little and often' .Looks like you may only have the post op chemo to do then?
 

Keep keeping that faith my fellow rollercoaster riders

Hilts

Hi all - nice to hear those words of encouragement Hilts, whenever I read a msg like that, it does definitely give us an upbeat feeling (which is greatly needed at the present time).

Tipo - welcome to the forum and walking 2 miles a day is a very good achievement.

Andi-keep practicing that walk to the departure gate!

Redski- nice to hear you're out having a nice family meal...nice choice of pasta

Lee

Hi everyone. Sorry for highjacking the thread but its active and I've read many of your stories and see you're all such a supportive bunch I thought it might be worth reaching out. My dad was diagnosed stage 3 summer 2021 and had flot chemo followed by surgery in October 2021. He's now well into his recovery from surgery but is very tired and sick and still finding it hard to eat anything. He's also been unfortunate to suffer from a deep vein thrombosis in his leg which is really painful and is adding to his discomfort. He is due to start post operative radiotherapy this week but my mum is very worried because he is still so uncomfortable and sick and she fears he's just not up to the radiotherapy and sees him "wasting away" in front of her eyes. He sleeps so much, and whenever I go to visit, he sits with me for a few minutes and then goes back to bed because he feels sick and doesn't like wretching in front of anyone. The oncologist and surgeon are pleased with his progress and surgery outcome, and have offered the radiotherapy to be on the safe side as they didn't find any spread into lymph nodes. What I'm hoping for is any advice or stories about people's experience after surgery so I can tell my mum and dad that what they are going through is all part of it, and that you can come out of it the other side. I've read here about people going on holiday etc and try keep telling them these stories to keep them positive.