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

They have just found me a trolley to put my oxygen bottle in so I can walk alone - too weak to carry the bottle. So I can get more exercise and get stronger - and get HOME !!!

Andi xx

Hi Everyone, 

I have never posted on a forum before so no idea how not to reply to some specific (sorry about that!)

My mum has just been diagnosed with OC with an 8cm tumour, we are going in for her CT scan on Tuesday. It has all happened really quickly and what I am sure always feels out of the blue. She is 69 and lives on her own. I live 2 hours a way and have a one year old so its all feeling quite overwhelming at the moment.

I wondered for my first ask for help if anyone can suggest how I can stop her losing the mad amount of weight she is losing. She is such a lover of her food and she is managing just on complan and watery porridge. I have just ordered some Huel but is there anything else we can do at the moment to help her keep her energy and weight?

We are waiting for the facts too but I could do with knowing what we need to prepare for, she is in denial at the mo (not a bad thing I think) about the care she will need through treatment and what happens next. I am looking at how I can stay with her or she stays with us but she is very stubborn about her independence understandably.

I would love just to follow your stories and connect, learn and hopefully keep positive 

Thanks for reading xx

Jen 

Hi Jen,

Welcome to the club that nobody wants to be in!. I am just over a year down the road with my Dad- have a good read of this thread and there's really useful information from everyone that has gone through the journey or is still on it.

On the point about weight loss - we found that having lots of smoothies (we have a nutribullet) full of different fruits, veg, nuts etc. Is a real good way of getting goodness and quantity inside whilst also being relatively easy to swallow (compared to solid food).

My Dads path was only chemotherapy but as a result of the chemotherapy (and other means) reducing the cancer,  surgery became an option. 

As it's been said on previous threads,  this part of waiting forca 'plan of action ', can be the most worrying as your mind is all over the place. 

Please read through the individual journeys on this forum and you'll get a lot of info and encouragement. 

Lee

Thank you so much Lee, so glad I've found this thread. It's already making me feel a sense of relief, it's such an isolating time. 
thank you for the nutribullet ideas, I didn't even think about that.

I hope your Dad continues to do well and his spirits are positive. 
 

Aha! Hey- Hope

As our Lee says - welcome to the club nobody wants to be in, but hey ho here we all are - The oesophageal cancer club. Glad you've found us x I bet you thought OC was quite rare..... as you can see there are a LOT of us x

I am , like you, the watcher, my then 56 yr old husband diagnosed, literally out of the blue in July 2020. We are out the other side ( for now- I always say that , trying to not tempt fate! ).

This is the very very worst part, the shock, horror, tears, anger,  confusion...... the human emotions exploding everywhere. The unknown. The diagnostic process feels endless. But once you have a plan it does get slightly better.

Like you, we have young kids, tweens, at the time , now very much teens!!!. As for how you'll manage, you WILL xxx

Diet- Anything she can get down . The higher in fat and protein the better.  My husband melted cheese in everything, olive oil everywhere, custard, trifles and loads of cream. He didn't' 'get on' with all the suppliements, so never really bothered. No doubt they would have been more palatable if they were 'beer flavour'! 
We all refer to this diagnosis and treatment as - the rollercoaster - emotionally and physically and everything.

Ask away- whatever is on your mindx

Andi - what a fashion accessory LOL, YOU ARE OFF- mobile- excellent. Don't worry, I have just bought myself a shopping trolley!!! LOL - functional, but I feel like my mother !!!

Hope everyone is chugging along. 
Keep keeping the faith

Hilts x

Thank you so much [@Hilts]‍  I have recently gone through this bloody rollercoaster with my Aunt who passed away last year so its all a little fresh to be back here again with my Mum. It's a horrible horrible torturous time, all the acronyms and jargon don't help!! I am a research fanatic so really not sure if knowledge is power or knowledge is @!£YU?£  Anyway, we are where we are and going to keep us both distracted best we can this next week.

How long did everyone wait from diagnosis/endscope/CT to MDT meeting? I am trying to get a handle on how long I can keep sane!

Hey Hope x

Yes, there seems to be a 'lot of it about' , I don't know what on earth is going on with cancer- it seems to be everywhere! - but I suppose we as a human race have a handle on many of the 'old illnesses' so I guess people are living longer and better, giving the old C time to move in. I am a bit of a pragmatic type of chick and still retain a sense of humour, even in the darkest of times (: essential I would say for this rollercoaster! 
Time to treatment etc. It very much depends . We got 'lucky' (: ours kicked off the same time as Covid, so everyone was focused on that, so I guess people just weren't being seen or referred! So E day ( endoscopy day) was 29th July, then CT Scan next day!! I thought OMG - that's it, but no, ct were quiet.got a phone call of the nurse at MDT the same day!!! You can imagine the panic! THEY Gave us 3rd August to come in for the 'chat', we delayed to the 8th as we were going on holiday! - what else on earth are you supposed to do eh (:. So, went along, told us what they thought , staging etc,and what they were going to do, dependant on upcoming PET scan . Started chemo 5th September. Finished the whole thing on 4 th feb - I think.

DONT LOOK AT GOOGLE! LOL - it is a horror show, the worst of the worst case scenario in all aspects- we all do though (: if any of us took what was fact on the net, we would have all popped off in a week- even the medical sites are bad bad. For me, it bears NO relation to the reality at all- don't get me wrong , it is no fun, BUT, honestly, the doom and gloom on there is enough to finish anyone off.

Keeping sane! Good,luck with that ! Don't even try too hard- you are human, with all those human emotions. If you need a meltdown, have one, gawd knows , most of us on here have had several.one posted made me laugh out loud once, posting "what not to say to cancer patients" , you know the sort of things other people say trying to be 'helpful' I still laugh at it now, it is on here somewhere- lord knows where though. I love 'how are you coping' and 'stay strong' - what on earth to either of them look or feel like- sorry , I am quite a literal chick'

Anyhows, snowing here, and kids are chucking it around and husband has gone out 'posing' in his dressing gown. Arrrrg

Keep keeping that faith

Hilts x

PS- I note your Mam is on the old complan- just my humble opinion, but gawd is it rank!! Like most of the supplements- you think modern medicine would have advance to things like mohjito flavour or something!! My husband just stuck to what he fancied, but modified.

You take your eye of the chat, and look what happens…..

Hi Andi – never have I been so utterly delighted and chuffed to bits to read your post!!  It’s nearly 9 months since my op and you sort of forget that it’s quite an ordeal at the time and for some even more so. Well done on getting this far and I would like to apologise for the “minced and moist” diet that you are moving on to – I still wake up in a cold sweat having the occasional nightmare about it. The name of the game now is “baby steps” – each day is incrementally better, and some days you will feel rubbish – but it will improve and you will be home for Christmas!

Hi Scott – post op, they are ultra cautious and will keep a very close eye on things – I hope your dad is improving now.

Hi Lee – it’s back to baby steps, but his steps look like they are following mine and there will be incremental improvements.  I too was in surgery for longer than expected (I think I mentioned on one of the threads, as it was quite funny (but not at the time)).  My memory was arriving in ICU post op to have a phone thrust in my face to tell the missus that I was still alive. 

Hi Lee – it’s back to baby steps, but his steps look like they are following mine and there will be incremental improvements.  I too was in surgery for longer than expected (I think I mentioned on one of the threads, as it was quite funny (but not at the time)).  My memory was arriving in ICU post op to have a phone thrust in my face to tell the missus that I was still alive. 

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.