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 [@Milly58]‍ 

So good to hear from you, I check back every day to see what is going on. Your trip away sounds lovely and even better to reflect on how you were feeling/thinking a year ago. What a journey you have been on but being through the other side inspires others still on their journey or travelling alongside a loved one.

We are having a bit of a tough time with dad at the moment. He's still in ICU and had a tracheostomy fitted this week....his lungs are not happy! But we are positive, he's strong and like many others on here our wonderful NHS have brought them through the other side! 
 

I hope everyone else is doing well, especially Andi and Lee (dad) being at a similar stage in treatment you are both in my thoughts often.

Scott

Hi Scott,

Thanks for replying and I'm sorry that you are having a tough time and that your dad is still in ICU. Complications can happen and the road can be longer than planned but the NHS and staff are so skilled and caring. Your dad obviously needs extra support/intervention at the moment to aid his long term recovery. I am glad that my husband's  journey and the journey of others on here are helping you at this time.

I too think of others including Andi, Lee and his dad.

keeping the faith

Milly
 

Hi all,

Milly - good news to hear he's off the pain killers- that's steady progress. 

Scott - I think our parents are on a similar course!

Ok..we've had a rough time since I last wrote. My Dad was in icu post OP for longer than expected but finally on the ward. After a week the scan showed there was a leak. Dad was then taken back to surgery and had a clip fitted. And a feeding pipe through the nose. In post OP resting room his heart started racing and he was back in icu for a few days until it stabilised and then back on the ward. Another scan a few days ago also shown that it hadn't healed and it's just a waiting game and another scan around 27th (Christmas in hospital !).

Also there have been other setbacks...twice air found behind the lungs so a drain had to be put in and the food pipe has twice come loose so he is becoming well known in the endoscopy department!

As bad as this has been (4 weeks since operation on 18th Nov), the worse news was that on the last scan they have found 3small tumors on the liver. This is really deflating to hear after the whole operation and all that goes with it.

The oncologist came to see Dad and said that he needs to get stronger and the immune system needs to improve and when it does he'll come up with a plan of treatment! Sometimes we think things can't get worse but they often do. 

As it's been said many times...its a rollercoaster!

Lee

Hi Lee,

So very sorry to hear that your dad has had these setbacks. The positives are they are sorting him but it's very upsetting when you take a step forward to then feel like you've gone back two steps. We called it 'snakes and ladders'!
They will do everything for your dad so he can get stronger and then they can tackle the tumours on his liver. The liver can regenerate. Have you been able to visit him? Is he well enough to go outside in a wheelchair to get some fresh air? I was able to visit Kev twice in ICU, three times in HDU and take him out in a wheelchair with his oxygen tank as well. I'm sure how COVID is affecting Spain? I hope you can see him. 

I hope it helps to know others on this road have taken twists, turns dips and hills but have come out the other side. It's not easy to put it mildly. Christmas can be celebrated on the beach when your dad comes home with Santa hats and jingle bells playing! 

keep the faith Lee we are with you in our thoughts and willing your dad, Scott's dad, Andi and everyone on to better days

Milly x
 

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.

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.

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 !