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 Distraught,

I don't know if you have seen my previous post in which I replied to you as it was part of my whole post! Everyone says the same the waiting is just so hard and as an onlooker and 'head of research' I really struggled more so than my husband who just dealt with the facts. It shows how even though the same procedures are used they aren't necessarily in the same time frame/order. We had a wait from 27th October until 30th December before we knew what path Kev  was taking and the PET scan was after the CT scan but before the Ultrasound Endoscopy and Fitness Test. As BFG said laporoscopy is the last test. My husband had the laporoscopy mid December but due to a delay Covid, Christmas and a problem with DPD blood tests didn't start chemo till end of January. It was horrible.  As everyone says when you know the plan it does help. We are all here for any questions,  we aren't medics but we do 'get it' from being in a similar situation.

keeping the faith 

Milly

Hi All,

Dad has made it through the other side Now for the recovery, from what I know sometimes is the hardest part but what a relief knowing that the op has happened now!

Lee I keep thinking about your dad, I'll keep him in my thoughts! 
 

Hey, 

Thousands of clapping emoji's for you and yours Scott. Was it today?
Yep- and Lee - how goes with your team?
 

As for this part of recovery being the hardest bit. Yes n no. You are 3/4 of the way through now, so I think by this time you've just about had enough of the whole shenanigans.! You've also been holding your breath for the 'big day' - so you will be slightly 'lost' as to what to fill your brain with!!- that's what happens after you finish , finish. The old rollercoaster, think of coming out of the tunnel, through the water, and now on the last upward pull before it stops(:

Its been very quiet on here recently.  All quiet here. Husband back at work this Monday.  He is bored out of his brains. Cough- nowhere to be seen -yay. Colon hopefully nicely tucked in abdomen. He's also just off to the local for 'research' purposes

laters folks

keep keeping the faith

Hilts x

Hi all

Lost touch a bit - still in hospital -operation was 29 September. Finally had tracheotomy out last week and now on a ward.  Started food (clear fluids) yesterday and am getting a bit stronger. Not sure I'd have done this if I'd known. Now I just want to be home for Christmas - not sure if I'll have second round of chemo. 
 

Sorry to sound negative but it's been a very tough 9 weeks

Andi x

Yay Andi - was wondering what you were up to.

Thousands of bravery emojis for you xx

yep, the op post op period certainly can have its'moments' a Trachy eh- well that is out out out and you are on food yaaaay- you're through it, they'll chuck you out soon, don't worry about that x

You probably 'regret' having the op at the mo, BUT, you are probably fed up to the back teeth and a bit blue having been looked up for 9 weeks. , but do remember the 'beast' has been murdered, stopped in its tracks. I often used to say to my husband what choice did any of us have! Hopefully, take some heart that there are quite a few of us out, done and dusted looking back - was it worth it? - hell yes, I have my husband alive and 'disease free' (for now- I always say that, just not tempting fate).

So Andi, enjoy your 'minced and moist'food and look forward to your turkey and trifle for xmas

keepkeeping the faith

hilts x

Ah Hils - thank you for that. Been put on puréed diet this morning - so progressing and closer to home for Christmas.  It is as you say, 9 weeks in hospital - I've never been so low but must pick myself up - I will win xxx

Hi everyone...well where do I start!

Just a recap for anyone new - my Dad was diagnosed with stage 4 inoperable oc back in September 2020 - large tumour in the esophagus and spread to both local and distant lymph node. He has had chemotherapy for the last year and in February managed to get covid and pneumonia! After a few positive ct scans he was sent for a pet scan and this shown a reduction in the mass of the tumour and the distant lymph nodes be cancer free. The oncologist then said there was a slight possibility of surgery - something he had ruled out at the start, when he had said the treatment was only for palliative care and life expectancy was 12 maybe upto 24 months depending. 

After meetings with the surgeon, the surgeon said he could do the esophagectomy but it would be a major operation and they are not sure whether they would find more cancer once they opened up my Dad. They said once they started the surgery,  they would do a biopsy and get the results within 30 mins - if cancer had spread to the stomach or any distant lymph nodes again,  then would stop the operation and see him back up!

So ... on the day of the operation (Thursday 18th Nov) I followed the advice from people on here and took the day off work and went out with my Mum (one of the only days here in Spain that pi***** it down all day), so we resulted into going to shopping centre and having coffee at every possible stop, looking at the time every 20 mins! We new that the operation was starting at 7.00 am and the surgeon was expecting biopsy results back by 10/11 so we guessed to receive a call around 11.30 if the news was bad and the operation couldn't proceed.  Anxiously, we went past the 12.00 then the 1pm mark and still no call! We then was expecting a call around the estimated finish time which was around 5pm. We finally got a call at 10.30pm saying the operation went well but was very difficult with complications early on( what a good bit of news but probably the longest day of our lives and I've never looked at my watch as much!).

My Dad was then in intensive care for 7 days and finally brought to the ward Thursday just gone. 

The surgeon said they had to cut two thirds of the esophagus and attach the stomach (which was preferable to using the colon). Also they cut out the lymph nodes surrounding. 

We have only been able to visit the last 2 days since being on the ward - yesterday my Dad had a cold apple tea and a little milkshake.  The surgeon said he will not need a feeding tube - he will be on liquids for the next weak and then on a pureed diet for the next few weeks. 

The surgsaid he is doing really well and maybe able to go home in 7/10 days depending...

Today my Dad has been to the toilet for the first time and took his first walk up and down the corridor! Amazing what we see as an accomplishment now!

The surgeon said that Dad will have another scan in about 2 weeks and that will show together with the biopsy if there's any micro cancerous cells - the surgeon also said before the operation,  the cancer would most likely return but the operation would be the best option to give more time, with a slim chance of being cured. As you'll all know, we now take the best options available (especially when there weren't any options available at the start of our journey)

So that's about it folks- sorry for the very long update .

Andi- very good to hear you are winning- keep going.

Scott - really good news about your Dad- sounds like we have similar stories!

Milly/Hilts/BFG/Redski/Doug and everyone else...thank you as always for your kind words of encouragement...they mean so much emotionally and factually,  thank you 

My Dad 

Lee YYYAAAAAAYY.

All done too - thousands of clapping emojis. You got through it too. And your Dad, done and dusted tooo - sounds like the op most have had- yaaaaayyyy. Nothing else to say really apart from YAAAAAAYYYY. (: genuinely happy and pleased for y'all. Sitting here smiling (:.

Keep Keeping the faith folks

HILTS.

Thanks Hilts :happy:

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 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

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!