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.

Update from the front line!
hi all, 

Went to see oncology today for next phase. Told us that he is disease free yay,pathology and response to chemo was all brilliant. BUT, there is always one!. They have said that standard treatment is now to give 4 more FLOT. The reason being that some of the clever little f**kers maybe hiding somewhere or are so small that they are undetectable, so just in case they have plans of setting up home they nuke them.

We were expecting it, so not a shock, but we are trying to get our head around that this is actually good news!
He is quite 'upset' about going through another 4. I really get what he means. It will soak in for sure.

Hospital described it as a standard offer and belt n braces.

So good, but we feel a little deflated 

Hi Everyone,

The big day arrives on Tuesday, being admitted on Monday just wondering what people took into hospital to keep occupied, or what they wished they had taken in? Secondly did anyone have a change in there voice after the operation. Because of covid im trying to take in as much as possible as there are no visitors allowed. Been advised i will be in at least 14 days, so any tips, advice greatly appreciated.

OMG Ray, 

I was just thinking about you ! I was thinking about your op and birthday!!! Don't worry though, not a pervo/stalker!!! I was coming on to post to you and there you were.
 

Anyhows- what to take in?. He took in a book, pants n t- shirts- that was it. - he was in a gown for 3 days.Small toilet bag. and essential ear plugs- quite noisy in there.TBH he had no time to do much. Between post op physio's getting him up & walking the ward,the next day and everyday after. He slept a lot. He also chatted with the blokes in the ward, who were all having the same op. I did take him a paper in everyday and a latte after day 3. They chucked him out on day 7! Probably on the early side as it was xmas eve! Your phone, charger and headphones= essential. We also did Skype calls for kid purposes as only one visitor allowed.

No change in voice, but an annoying cough. Which improves hugely with his chemo Dex.

He had a great histology and is now doing the post op chemo. Which of course is great fun.....  not. He is even almost mastering the post op eating- he's managed curry, pie n mash, gravy dinners etc. At the start is was all mush, but by week 6 he was on everything. He gets dumping ( what a surprise), but I really getting to grips with it.

So , good luck Ray and a 'happy' birthday. Getting rid of the *** will be the best present.
 

Wishing you all the best of luck for your op Ray, do come back and let us know how you are getting on when you feel able to do so! We are all rooting for you x

Thank you for your comments and advice, will keep you informed of my progress.

Hi Ray 

we are all thinking about you today , i am sure all will be fine and look forward to hearing how you are doing in weeks to come , take care

Douglas

Hi Ray, just wondering how you are getting on? Hopefully you are recovering well. 

2 weeks ago my world fell apart, when my husband of 42 years was diagnosed.  Tests done so far suggest it has been caught early stages but PET scan today will reveal the truth.

I am still numb, can't ear or sleep  properly and keep crying..  It's so unfair.  Our daughters are also in bits, both of them idolise their dad and are worried sick.

How long will it be before we get a response to the PET scan result?  If it is early stage, will this mean FLOT and surgery?  It would be good to hear from those who have already been there.  He is still managing to keerp down soup/bread and the usual milk shakes and ice crream, which seems to have halted the weight loss.

Just to talk to someone who has experience of this would be helpful;

Hi everyone, 

Milly - thanks for your words of encouragement as always, they really help.

Scott - thanks also,  I'll keep you informed over the next few days of progress. 

Distraught- I am probably not the best person to reply as my Dad's situation is not really the 'norm' - we were diagnosed stage 4 and only palliative (but things have changed slightly). I know that catching OC early gives you the best outcome possible so that's a real positive for your husband and your family- good look with your next stage. 

Lee

Hi distraught

In the words of hilts - welcome to the club that nobody wants to join.

I was diagnosed at the beginning of October 2020, and like a number of others on this little chat of ours was put on the FLOT/surgery/FLOT path.  Surgery was back on the 2nd March and the 2nd round of FLOT completed on the 17th June.

I can't sugar-coat it - it is quite a hard journey, think rollercoaster and bumper cars, with the odd twister thrown in.  You are currently going through the assessment phase to check and double-check that the path is suitable for your husband.  There will be a team setup in the hospital who will probably meet every week (a multi-disciplinary-team (MDT) who will discuss the PET scan and if confirmed localised, then there will be a final laproscopy (where a camera is inserted) and the major organs checked over for any signs of spread.  Once all confirmed OK, then FLOT/surgery/FLOT will kick in.

It's great that he is still eating well and it's important to keep the weight up and to ensure that your husband is reasonably fit for the journey.

We are here for you and can answer any questions, however gruesome they may sound.  

And feel free to rant!  We've had some great ranters on here (I won't mention any names - cough).

You should also have access to an Upper GI nursing team who will usually be on the end of a phone to answer any ongoing questions around treatment and timescales.

cheers

bfg

Hi distraught

In the words of hilts - welcome to the club that nobody wants to join.

I was diagnosed at the beginning of October 2020, and like a number of others on this little chat of ours was put on the FLOT/surgery/FLOT path.  Surgery was back on the 2nd March and the 2nd round of FLOT completed on the 17th June.

I can't sugar-coat it - it is quite a hard journey, think rollercoaster and bumper cars, with the odd twister thrown in.  You are currently going through the assessment phase to check and double-check that the path is suitable for your husband.  There will be a team setup in the hospital who will probably meet every week (a multi-disciplinary-team (MDT) who will discuss the PET scan and if confirmed localised, then there will be a final laproscopy (where a camera is inserted) and the major organs checked over for any signs of spread.  Once all confirmed OK, then FLOT/surgery/FLOT will kick in.

It's great that he is still eating well and it's important to keep the weight up and to ensure that your husband is reasonably fit for the journey.

We are here for you and can answer any questions, however gruesome they may sound.  

And feel free to rant!  We've had some great ranters on here (I won't mention any names - cough).

You should also have access to an Upper GI nursing team who will usually be on the end of a phone to answer any ongoing questions around treatment and timescales.

cheers

bfg

Thanks for the reply, it helps to hear from others who have been there.

We are still waiting for a response from the hospital following the PET scan, they said results would be available within 2 - 3 days.  All this waiting around for something to be decided and hopefully, treatment started, is driving me insane.  

Her is bearing up better than I am if truth be told.   I just want them to say he is a suitable candidate for the surgery and chemo and this waiting around not knowing is torture.  The initial diagnosis based on endoscapy, CT, bloods, ultrasound etc is showing localised and 1 (maybe 2) lymph nodes.   If this is confirmed when the PET scan results come through, will this mean he will be offered the surgical route?

I am also left feeling why on earth did we have to go through the bother of CT, ultrasound, bloods etc if it doesn't give a definitive result?  Why not just PET scan straightaway?  All this testing has just wasted yet another month while he gets worse

I have a very close friend whose OH went through this same procedure almost 8 years ago, so she's been a massive help but I am just so frightened and cannot sleep or think properly.  I am trying to keep from him just how I am feeling and am attempting to be positive and strong - it;'s not easy

Hi distraught.  This is by far the worst time and is incredibly frustrating, but they will be checking and double checking and discussing plans within the team.  I'm not a medical expert, but my understanding is that if you want to find a problem -  do a PET/mri/ct scan in isolation, they are notorious for false positives and conversely a negative result (confirmation that the embuggerence is localised) still results in a final laproscopy where they will visually check before flot/op/flot).

What you're feeling is normal.  It doesn't really help, but we tend to keep our head down and get on with it - which can be incredibly frustrating for those around us. 

You should get the results soon and the journey will become clearer.

Bfg

Hi all,

We now have the PET scan result and are due to see the surgeon allocated to his case next week.  The result shows what the CT scan also showed, localised and limited to 1-2 lymph nodes.

If, which looks likely, he will be put forward for the FLOT and surgery route, how does this work and how long before chemo begins?  What can we expect by way of side effects? etc. etc.  Any advice and help to prepare would be useful.

He's still managing to keep down thin soups, custard, gallons of ice cream and yoghurt piled  high with clotted cream.  He's also having the protein shakes prescribed by the doctors

Hi distraught,

I hope seeing the recent positive posts has helped you. As I think I said on my previous posts there are slight differences between timings/order of tests. My husband had a longer than average wait until start of treatment - around 14 weeks in total so a long time. Most people seem to range between 5 - 8 weeks. 

Regarding side effects it just depends on the individual but most people seem to get some at varying degrees. The doctor/nurses will give you a leaflet which outline the effects but try not to be scared as it doesn't mean your husband will get all these. Most people find it gets harder as the cycles go on but not everyone. It's a case of  taking it astep at a time. They give you a rapid response card which sounds alarming but don't be as it's more about ringing with symptoms and getting advice so they can help you. A digital thermometer is a necessity. My husband also drank lots of warm water (he took flasks up for nighttime). Also eating as much as possible and exercising as much as possible before treatment starts will help. Also the same during treatment. 

Hope this helps, everyone on here will try to answer any questions.

keeping the faith for everyone 

Milly

Something weird going on with my notifications again- only got one note and look and 4 posts.....

Anyhow

HAPPY XMAS- Millie and Kev. My Nana and half my family LOVE those weekends , Bournemouth , Torquay and Eastbourne being annual haunts for years. - slade been on yet (:

Distraught- Hey. 'Good' news then and he'll be joining the many merry band of brothers on here . Chemo , well I think everyone gets side effects to varying degrees, it is superb  at what it does, cell murder; but with that does come some effects, but as Millie said, you will be given all sorts of support/ help lines and stuff, you will certainly NOT be left to it. Ask away- we are all expert in the lived experience (:. Mine started 5 weeks after diagnosis and after the 2 nd FLOT could eat as normal again, so clearly FLOT destroying those nasty cells. Diet sounds spot on- keep going x As for preparing- just go with it, as everyone is different, but stuff that makes you both happy and smiling like nice food, trashy TV, whatever you enjoy x

Andi- of course you will be down - even though you'll know all the reasons why, it still isn't nice. Human emotions are pesky things to please sometimes ! BUT, you will get home, get on the turkey and trifle, even a pint or four ! (: and before you know it your little great granddaughter will have you wrapped around her little finger tips (: . Remember too you are now and 'expert' member, so all the newbies need you too- as well as the old timers xx

Take care y'all

Keep keeping the faith

Hilts x

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