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,  sorry to hear about the  covid- the new variant is just breaking out here - we are a few weeks behind the UK.  The feeling is we'll be going into another lockdown after Christmas! Plenty of water and rest is what they kept telling my Dad. My Dad's taste only recently came back a few weeks ago and he had covid in the February. 

Lee

The laparoscoopy went according to plan last Wednesday - surgeon has referred him to the oncologist for chemo to starf and next appointment is due Wedmesday before Xmas

He's losing weight still, though this has slowed down due to protein drinks, and is struggling to keep down even thin soup, custard and yoghurt without being sick

Seems the surgery confirmed the earlier diagnosis of early stage, limited to 1 or perhaps 2 lymph nodes with the cancer in the oesophgus lining.

I just want the treatment to start now, not next week or the day after Christmas, but NOW.  All the waiting for results, appointments, more tests, more results, more appointments etc is driving me nuts.  I need action, treatment, some progress in the right direction and I want that to happen fast.  Christmas cannot be over quickly enough for me

I am only concerned that the current problems with the new Covid varient could cause difficulties with regard to his treatment - this would seem to be in the lap of the gods atm.

Hi Distraught,

I totally understand your frustration however you are in a better position than at the start of all the tests. We had to wait until the 30th December before we knew which path my husband was on and his chemo didn't start until the end of January due to a mix up with the  mandatory DPD test. In our experience Chemo didn't start straight away. We had a meeting to explain what is involved etc then blood tests.  They are thorough and we found the NHS staff and the cancer nurses were very skilled and dedicated. We also had district nurses come to the house to take bloods etc before each cycle. My advice would be try to take it a step at a time and keep a record. If you have any concerns contact the appointed person in the upper GI Team. We chased a few things up but they will help you. This is a very stressful time and when treatment starts it feels better because something positive is being done. However all the tests etc are a necessary part of this journey no one wants to be on.

Please take heart from the people on here who have been threw a similar experience and have come out the other side.

keeping the faith

Milly

through not threw lol predictive text! Although it's acceptable to feel like throwing something at times! 
keeping the faith

Milly

Hey Distraught.

Yep, you want it to start TOMORROW!! Trust me ,when I say tomorrow will come soon enough. In my experience all the people involved in upper GI cancer treatment are utterly superb. They leave no stone unturned when it comes to looking at what they are dealing with. You've had the final diagnostic test with the laparoscopy- they will look at ALL the investigations as a team and come up with the best plan.

This is the worst bit emotionally, and we all know you just want to crack on. 
AS for the old Covid ( me currently in possession of it- 1 more day locked up) , it shouldn't make any difference. Around here we have 'hot' and 'cold' wards/hospitals. The entire services are separate. I think they have realised that there are other things more/just as  important (to us). The only issue may be staff sickness, but again that is a year round problem for any number of reasons. Chemo is so good at what it does (cell murder ) so it will get to work straightaway, even if delayed for a week or so, for those dodgy cells their time is UP!
As for eating/intake- it really is whatever, wherever, whenever. Strangely enough, my husbands 'swallow' and symptoms did SEEM to get worse after diagnosis, once we knew what was there. Not sure it actually was worse, but sure felt like it.

This time last year, we were 4 days post op. Incredible really. Here we still are. He's really looking forward to an 'unminced turkey dinner', with unliquidised veg !!!, no doubt a pint or five! - not yet Millie!, but I put nothing beyond his 'personal goals' !!
Distraught- YOU WILL GET THERE TOO.

Anyhows- keep keeping that faith folks and have a cosy xmas

Hilts x

Hi Everyone

What a rollercoaster ride we have been on here, my Mum has now been told it has spread (after saying it hadn't) and we are now dealing with lymph nodes and bones. My poor Mum has had such a shock, she had been keeping very positive.

Like you, Distraught, we are frustrated too. My mum had her original diagnosis three weeks ago and we still haven't had her meeting to decide next steps. 

Christmas is a funny one, we are now preparing for this being our last and no idea if really we should be - keeping our faith but it really is getting the knockaround of the century. Oh and let's not even get started on the latest Covid news...! 

Wishing everyone a strong and positive festive time XXX 

hi Distraught

Trust me i was first diagnosed in January 2020 i started my chemo in March 2020 right at the start of the first full lockdown and if anything it made it easier as there were less people in the cancer wards and in the hospital in general , from first  chemo to home took about 5 months but it flies in , once the oncologist sets the program it will all fall in to place i am sure , take care now and keep posting 

Regards

Douglas

Hi all, hope everyone is OK.

Just wanted to throw out a quick note to wish you all well for Xmas and that I hope you have a good time with your families and can focus on spending time with them and enjoying yourselves and not thinking too much on our journeys and situations, having joy in the moment and happiness with our nearest and dearest.

God bless you all for your support, encouragement and camaraderie through 2021 !

Merry Christmas Redski.

Lee

Feliz Navidad Lee !

Raise a San Miguel for me fella.

Feliz Navidad Lee !

Raise a San Miguel for me fella.

Good morning everyone... update on my Dad.

Ok...from my last msg (don't remember exactly what I put) we have just been told that my Dad can come home tomorrow .

Dad has been in hospital following surgery for around 6 weeks now due to complications, - he's had a Lung infection, 2 leaks in his 'new esophagus' (this was the biggest delay), trapped air behind both lungs, racing heartbeat (that the cardiologist now says is due to the surgery and the close distance to the heart) so now dad will have to take a pill everyday to regulate the heartbeat, bed sores...

The last few days (after the x-ray showed the hole had finally healed) they have been taking the pipes and tubes out one by one and replaced the feeding tubes with liquidised drink and soup. This has all been fine and today eggs and cheese are one the menu! 

So now comes the time of the next stage - any advice would be appreciated e.g. correct food plan and times etc. 

'Keeping the faith' has been difficult lately but after getting the news Dad is coming home...bring it on

Lee.

The path to success is never a straight line Lee, but this is an awesome update, awesome progress for your Dad and awesome news for you and your family @ Xmas - thank you for sharing !

Yippee Lee,

This is such good news to here! Your dad has done amazingly well to keep going and get through these tough set backs. You and your mum have too. 'Keeping the faith' is not easy at times - We know . Like you Kev's journey was longer than planned 6 weeks in hospital  in total and 3 life saving major operations  I think he met all the consultants!  To give you hope he had 6 pints yesterday Hilts!

Regarding next stages others may have better advice for this as I skipped this part because he wasn't on a liquidised diet by the time he came home. However soft food is what they advise and small and often. Shakes and soups. White fish is good and soft meats/veg/potatoes. I think most people would say what he fancies and be guided by him. Supplements help. My husband had fortysips. Try not to give him too much and don't be upset if he can't finish it. 

Honestly Lee you've made my day as I think of you and others often so thank you for keeping us updated we all appreciate it.

Keep the faith Lee and I truly hope for a better 2022 for everyone 

Milly
 

Hello all, I hope you are well and you have been enjoying your Christmas so far, or as much as you have been allowed to given what I imagine you have been going through. I am quite new here and noticed this is quite an active forum thread so thought I would post here.

After a few weeks of not being able to keep food down, my mum got her acid reflux checked out and it has turned out to be oesophageal cancer. She had her pet scan just before Christmas and a laroposopy scheduled for the new year. I'm hoping they will be able to do surgery to get rid of the lump. No solid news yet on if it has spread. 
 

I lost my dad to cancer (lymphoma) in February this year so it's been a very hard year. I saw him suffer and lose weight and he just wasted away before my eyes to the point where I overheard him saying that he wanted to die. Because of Covid etc he didn't really get the treatment he needed when he needed it because of how overwhelmed the hospitals were etc. 

I've seen some positive stories on here which is good to see. It's just hard to not be pessimistic after everything that has happened with my dad. My mum is a thin woman anyway but she has lost more weight and I feel so sorry for her not being able to eat her favourite foods especially at Christmas. Certain foods, even soup sometimes makes her sick and it's like deja vu with my dad. She has those protein shakes that the hospital prescribes and bless her she is trying. I can tell she wants to cry because she is so sick of this liquid diet. She often burps a lot after drinking something and I hear her stomach make noises which as I understand it is normal. 
 

anyway I just wanted to introduce myself and any advice would be very much welcome, thank you. 

Welcome Franface to our group. Firstly, please accept my condolences on the loss of your dad. 
Sorry to hear that your mum has been diagnosed with OC and I hope finding us on here will help you and in turn your mum. I am the onlooker like some others on here. It sounds like your mum has got over the first hurdles as the laparoscopy is the last one. My husband had a longer than average wait from diagnosis to start of treatment as he was diagnosed aged 62 on 27th October and began chemo on 29th Jan 2021.It was a complete shock as he seemed fit and healthy.  However the care he has received from the NHS has been brilliant overall. He had complications which prolonged his stay in hospital but he is here and is doing well. 

This waiting part of 'the journey' is emotionally stressful and I imagine particularly hard for you due to your recent bereavement. Try and take it a step at a time.,We called it 'walking the line' not looking too far back or forward. 
Fortunately my husband was able to eat most things although not everything. Most seem to find an improvement on swallowing once chemo starts to kick in. My husband found it easier after the second cycle. 

I hope it helps to know others care and get it. Everyone is unique but this OC club that no one wants to belong to has helped me enormously over a long and at times very difficult journey.

keeping the faith 

Milly

Hi y'all, 

hope you all had a 'peaceful' Xmas xx we had the best. Husband was feeling a bit emotional as a year since kicked out of hospital. He said he xmas dinner was the best he'd ever had (correct response) as he is here, disease free (for now) no more mushed food- like last year .

My Covid has gone yay- not that bad, just like a filthy cold. Seems everyone I know has gone down with it!!! No, I was not the vector LOL. Funny though, I was the only one in this house to get it, the rest nowt???.

MIllie- I last reported five, now the magic number is 8!!!! He went out with his friend for 'a Xmas drink'and had rather few to many- boy did he suffer for 2 days after hahahaha. He , despite the hangover was quite pleased as his research went off without a hitch......... I note your Kev is up to 6 !!!!. I bet he is pleased with his research results too.

LEE - big clapping emoji's yay. Your Dad is on his way. We have all said it I think, but there is no 'straight road' through this, but little by little onwards. Soft diet, well, my advice ( for what it's worth) is anything he fancies, modified. There are loads of 'special' things out there , but most are absolutely rank. Husband has everything I was cooking, but blitzed, just a standard blender, then just over the 2-3 weeks make the blend coarser.He also made the most of things like ice cream, cream all the lovely high fat stuff. They gave him all these drinks before discharge, but they were so disgusting that he didn't bother. Within about 2 weeks, he was pretty much back on unmushed. As for his liver, well they will nuke them back into line - I think you said he would be having more chemo.

Last but by no means least- welcome Franface. To the oesophageal cancer club. None of us are medics just 'experts in the lived experience' we have or are 'living the dream' (:. Ask away, anything that's on your mind. Your Mam's story like ours, a bit of acid reflux, or so we thought, Bob's yr uncle, OC!!You are at the worst bit emotionally right now, it get a tad better when you know what you're dealing with and where you are going. 
KEEP keeping that faith folks

Hilts x

Hello All,

I hope you all had a wonderful Christmas and [@leechap]‍  great news on your dad! I hope he is enjoying being home. 
My dad has also made great steps in his recovery, got his Trachy removed yesterday and moved back to HDU! Today we walked in and he was eating a cheese sandwich!!! We about fell in a heap! We are assuming because he's had so much time to heal it's now allowed! 
He is very weak though and told to build himself up but not allowed diary, any advice?

Hope everyone else is doing well, and for those further down the journey you enjoyed every minute of your Christmas!

Hi all,

That's fantastic news Scott! Also very pleased that you can go and see him. Yes the same with my husband re eating as his actual Oesophagectomy went text book. The complications were as a result of the drain removal causing internal bleeding. So the join healed during his prolonged stay in hospital. Not sure why they have advised no dairy if he's eating cheese? The dietitian should visit him so if you have any questions you could write them down for your dad to ask or give to him/her? Such good news and thanks for letting us know. Yes we had a better Christmas thanks. 

Hilts - blimey a new record! Kev was Ok after his stint - it was over a long period of time!  Pleased that you are better from COVID  and no one else has caught it. 

Redski - good to hear from you. I guess you are free from treatment now? Hopefully you finished your chemo and enjoyed Christmas. 

Lee I bet your dad is pleased to be home! Slow and steady is the way forward now. Lots of adjusting to a new plumbing system. 

I hope everyone is doing as well as they can be on their own paths. Andi I think of you often.

Keeping the faith, as always, for everyone 

Milly

Hi all,

Great news Scott - a cheese sandwich is a big step at this stage. Not sure about no dairy...when my Dad was discharged yesterday, there wasn't much advice on nutrition and diet, just a general sheet of foods but they did emphasize little and often and nothing hard for a few weeks. My Dad managed to eat a jacket potato with tuna last night (skinless) and tortilla during the day...had no issues and really enjoyed it. Good news you're over the COVID Hilts.

Lee

Hi Lee,

Thats really good news! If you Google nhs Oesophagectomy (which I guess you've done already) you should find info on diet. Sometimes hospitals have their own advice sheets on there. I think the 'city of spires' has a discharge advice sheet on the internet.
As you said it's little  and often. You could try adding calories with butter, cheese, cream and I add skimmed milk powder to whole milk. White fish is easy to digest, mince like spaghetti Bol etc. I add spinach in dishes. Eggs are a good source of protein. You can scramble these with cream and butter. Pancakes, omelettes. Cakes and shakes! As  we 'onlookers' have said whatever he fancies! We were advised by an ex patient that pomegranate juice is good for your platelets (the 100% one). Also green foods like broccoli are rich in iron. 
Thanks for the update!

keeping the faith

Milly