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.

Thanks Milly,

Yes we can visit my Dad day or night now he's on the ward.  My Mum has been staying every night and I've been visiting twice a day. The covid restrictions are increasing again so they are being very thorough. One day at a time!

Lee

Hi Lee,

I'm so pleased that you are able to visit your dad and it's good that your mum can stay with him too.

keeping the faith

Milly

Hi y'all, 

Been very quiet on here recently.

I'm stuffed up with Covid ( growling face emoji) running riot around here. 8 days in now. I would describe it as foul cold/ mild flu. But most of all a pain in the ******. 

On the upside we finally managed to get tattooed, they are lush. It was/ is a 'celebration' of coming out the other side,1 yr exactly since op, disease free at the mo, and also a large part of doing what you like! All part of the ongoing Keith Richards health promotion plan. BUT my biggest stress is showing my M&D !! Mum is going to go nuts!! I am 52, not 2!!!.

Millie , you are absolutely on the money with snakes and ladders, isn't it just. 
Husband is on good form, not got the lurgy yet.... fingers x emoji's. To all those still on 'active duty'- best wishes and keep keeping that faith.

Hilts xxxx

Hi Hilts and everyone,

I hope you are recovering  from COVID and you'll soon be free! Glad you've got your tats to mark the anniversary of the op! Proof you can come through and out the other  side.  Kev has been asked to be involved with a new initiative to talk to others patients about preparing for the operation.

keeping the faith for everyone 

Milly

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 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