Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Welcome Sally,

Glad you made it over. Weeping is allowed as is every other emotion! Yes day 4 and this cycle dare I say  he seems better than last day 4, sun helps too! He is just about to go a short walk. Not much appetite but has managed to eat breakfast and a boiled egg and toast for lunch. Had a scone too.

My ankle is improving thanks - keep going and 

keeping the faith

Milly

Milly you are just showing off now!   Blimmin heck,  toast and boiled egg and a scone.  On top of breakfast.   I shan't be telling my husband any of that he'd turn green!    He hasn't had a successful piece of toast since forever, let alone a scone!
 

I am happy for you really tho!   Hope the sun keeps shining for you

Sally

Sorry Sally! I don't mean to upset anyone! I guess it shows how everyone's situation is different. My husband is further on from Oesophagectomy op I guess. Can your husband tolerate milk? I've made milkshakes with ice cream in as they are good for you. I presume the dietitian has given you advice? My husband had compact fortysips which seemed ok. 

Others on here have had Asda milkshakes and trifles seem a good option too. Also custard but everyone is unique but I think time is a big factor. 
 

keeping the faith

Milly
 

Greeting to y'all, 

SallyR - welcome to the club. As I keep saying the ever expanding Oesophageal cancer club. We are still breeding like rabbits.

SallyR- you are a watcher like me, my husband being the victim. I'll get my crystal ball out and see if I can  'see' how you got here

- husband , between 50 and 65, fit as a butchers dog, always had a bit of reflux, Gord, then out of the blue some food clogging, gp, then 'that endoscopy' and bingo - OC.???

That is how most of us arrived here.

We are out the other side (for now- eke, always say that , just in case) after 9 months of chemo, surgery, more chemo, then basically clear off & live (:

So- welcome

Millie- hope that foot is getting better.

i won't tell y'all what he's been eating LOL- but be assured , everyone will get there at some point 

Keeping the faith

Hilts

Milly, don't worry I'm not upset at all by anything you would say!   I love hearing what and how everyone is doing!   Other half is sitting in garden at moment with beer and quavers,   so he's happy at the moment.    I've been watering the plants and had some Prosecco so all is good for now.

[@Hilts]‍  you and your crystal ball are absolutely spot on!!   He is 59, and was very fit.   We are about the same stage of treatment as Milly and husb.   Just on second round of post op chemo.   He still has terrible trouble with eating even small amounts and he "crashes".  He does have lots of input from various quarters like the dietician, nutritionist, physio etc.    But this dumping syndrome or whatever it is is a big downer for him.   We have tried so many things, the cupboards are full of failed foodstuff.   I'm wondering if I can go on some kind of diet to use things up as we have so many nutritious drinks and soups it seems such a waste and hardly any room, especially now we have bottles of overnight feed (looks like salad cream),  medical equipment, syringes, water, pipes, wipes, bottles of pills and potions our house is bursting at the seams.  Doesn't seem much to be done about it as far as I can see, so I guess we just have to hope time does the trick.    Funny thing is alcohol seems to be ok.   Thank goodness.   I know it's awful to say but at least he can have a drink.    

cheers, Sally

LOL- SallyR, 

The booze, yep, mine has been enjoying his tipple since about 2 weeks post op! He has now graduated to 4 pints!!! He couldn't drink that amount in one sitting before he had the trouble!- so he is most pleased, and for some unknown bonkers reason he doesn't get dumping after it!

The food and dumping- wow, such fun. I too went and purchased a load of supposedly'good' stuff, thankfully, not too much as he wouldn't even sniff the stuff. Since day 1 he has been eating what he usually does, nothing special, he was on the steak, pies and curries from about week 4. Most of his weight loss came during the post op chemo. As his appetite was appalling due to the nausea. So shoved a fair bit of that 'margarita' flavour jet feed.He is enjoying the high fat/ protein / low carb stuff, but struggles to get enough down the hatch to maintain his weight, so now he is lugging 2 pints of jersey milk a day.

Dumping - yep . He has now become a bit of an expert at knowing what will set it off and how to avoid as far as possible. He leaves off things like rice, potatoes, but is okay with a few slices of bread and a few chips. It really is trial and error and it DOES get better. He carries those glucose tabs (cheap ones from supermarket -about a pound for about 20 ) and takes one or two if he's been at the rice or bread and feels it start to come on.

My view now, as I have said many times about all this healthy diet stuff - he ate a reasonable diet and was quite fit and STILL got OC- so it is the 'Keith Richards health promotion plan' ( watts checked out earlier ):  for us it is do and eat what you like. Got to enjoy it while here. So, TBH I chucked all that potion  stuff, they call 'healthy' in the bin. It is supposedly'good for you', ye right, bad for mental health I would say.

Once this awful post op chemo is done, then recovery really begins. Like us, you'll probably look back and think 'WTF just happened'! It is the emotional stuff we are dealing with now.

Any hows

keep the faith

hilts

Hilts, yes I just don't get the drinking thing.   Do the glucose tablets work for your husband then?   I got some for mine and he is so infuriating and just won't even try them.   He did before the aprés-op chemo, he would have a couple just for a bit of energy on a walk.   But now he just won't.   Even I take them sometimes if I feel I need a bit of energy!   More packets to add to the back of the cupboard, for my future diet plan whenever that may start.   At the moment my main source of fuel is chocolate, I buy those large family bars for a £ each, lovely.   The same shop where those glucose tablets are.   You are right about healthy substitutes can be bad for the mental health as that is what he says.  So what can you do.

thank you for writing, Sally

Hi Sally and all,

When I look at our posts it really brings it home to me the complexity of OC. Yes everyone is unique no matter what type of cancer but being so closely linked with food and drink, which are essential, makes it extremely tough. Our experience is that it's difficult to comprehend the enormity of it all - so yes Hilts emotional side is huge!

Everyone has different experiences and outcomes. We certainly didn't expect what happened after a successful op! However the positive is that there are people who survive, adapt and get their lives back albeit at different times and levels. Also most people who've been through it say time is a major factor ( what the surgeons say too) so steady as we go. Sally hopefully your husbands eating will gradually improve. Personally we have a mix of fruit, veg etc along with cakes, I am also a £ choc fan lol and we don't focus on any one thing in particular. It's personal choice and again depends on how your new plumbing is coping. My husband has chosen not to drink until after treatment ends. 
 

I feel Covid has added an extra problem but we are aiming to try and get back to normal as possible fingers crossed after post op chemo. It will be a year in October since diagnosis, again we are behind others. Longer wait til treatment 14 horrendous weeks and then complications! But thank goodness for the NHS staff and we are so lucky to live here especially when we see what's happening elsewhere. 

I hope it helps to know we are all thinking of everyone affected and I personally have found huge support and some good advice on here. So thanks to you all! Onwards and upwards and

Keeping the faith

Milly x

Ps a friend of a friend had op two and half years ago and has returned to work as a policeman and has just completed the Yorkshire 3 peaks for cancer. He is so determined- didn't find it easy but he did it! 

Howdee y'all

Yes, SallyR the glucose tabs defiantly work for him. It may well be part psychological, but who cares, if it does the job. I got mine from a major supermarket beginning with S . In the 'health food' (yuck) section, right at the bottom shelf with the diabetic stuff. Supermarkets always put the cheapest on the bottom shelf. There are some glucose potions there costing £10+, which are all of course at eye level. Who'd a thought it!.

We are now 1 yr 1 month post 'that endoscopy'. . Physically husband has done quite well. He's not been allowed to get away with too much resting as tween kids insist on swimming and other tween kid activities. He has gone back to work, but is considering more a more 'flexible' future.

He defo needs something to keep the grey matter out of mischief!
The 'only' trouble he has ongoing it the cough- pretty much since post op, so not anything 'dodgy' Probably down to him not understanding the concept of 'smaller meals' lol. But, the biggy  for us is the 'will it come back' question! It is one that nobody can answer, so dealing with that is very tricky. We keep thinking about the proverbial bus and the fact that any cancer can turn up out of the blue anywhere, BUT,   It always come back to the 'will it come back'. We are thinking about Maggies etc, but ultimately, they cannot make any of it go away and we have to learn to manage the 'thoughts' .

I would say we are back to normal, we have carried on, done stuff we usually do. Covid has been largely background noise and TBH we have 'used' it to our advantage sometimes, it has reduced the pressure of doing things with others at a time where we really didn't want to see others - if that makes sense. The kids have been in school since the off, as we both have been in work. I have always taken a very realistic and pragmatic view of the whole thing. It might get me, it might not, but meanwhile carry on. and like OC , what choice have we got!
As ever keep the faith folks

Hilts

Hi All,

just had seriously naff news, been waiting all this time for the big op, only to be told today that the cancer has spread and surgery no longer an option! To say I'm gutted is the understatement of the year, will speak to consultant next week and see what's planned. In meantime, keep the faith everyone x

Tabnabs

Hi All,

just had seriously naff news, been waiting all this time for the big op, only to be told today that the cancer has spread and surgery no longer an option! To say I'm gutted is the understatement of the year, will speak to consultant next week and see what's planned. In meantime, keep the faith everyone x

Tabnabs

Oh Tabnabs.  That's horrible news.   To get on a Friday as well.   When are you speaking to the consultant?   Hoping and praying something can be planned that will help you with this.   keeping the faith for you and everyone 

Sally X

Hi Tabnabs,

Sorry to hear that news - we had similar news 1 year ago, my Dad has just completed 1 year from when first diagnosed and the chemotherapy along with other measures, have 'maintained ' the disease and it hasn't spread since. I guess what I'm trying to say  is there's something 'a little positive ' to be had and it's not all doom and gloom. The plan of action that you'll set out with the oncologist will be an important moment- good luck.

Lee

What terrible news, news I myself got in June. There is still hope, and at the very least, a journey ahead. I'll be thinking of you and "keeping the faith".

Semi-regular personal update: in last 9 days I've spent 4 full days in my chemo unit (9 hours a time). Needed two blood transfusions (two units a piece), my regular chemo day, an echocardiogram and a new type of targeted chemo too. Been to hospital every working day in the last 6(!) and going to a new one on Tuesday to possibly start radiology on my right arm.

Had an emotional breakdown yesterday which finally meant my Mum felt useful as she came to see me when I got home and I got to cry on her shoulder. My arm pain is intense and I am 4 different painkillers and my mucus problem was so bad I even worried the chemo nurses yesterday. But sent Mum to pharmacy and an over the counter drug has helped hugely last night. Feel like a new man. Not sure why my doctors and nurses haven't suggested it!

Hoping for a relaxing weekend for me and all of you. 

Hi JaelinKent, I am new on this forum.   And it's not me it's my husband with the Oesophageal Cancer.   You have been through a hell of a lot not surprising you have had an emotional breakdown.  Having awful pain to deal with on top of everything else.   So so glad your Mum was able to be there for you and she was able to provide a shoulder to lean on.   She must have been a bit relieved too, to feel maybe she could be some support to you at last with unbottling your emotions.   How clever she must have felt to have found something in the pharmacy that actually worked!   When my daughter had cancer I felt so distraught and out of control when I felt I couldn't do anything to help her, and sometimes felt what I was doing was having the opposite effect.

SallyX

Hi Tabnabs,

You have been through so much and it is horrible news especially when you had made the big decision to go ahead with the op. As Lee and Jae have said Oncologist will have a plan and I hope it helps to know we are right behind you and here to offer our support. 
 

Keeping the faith

Milly

Hi Jae,

It's totally understandable that you have had an emotional breakdown and your mum being able to be there for you is important to both of you. I just wondered if you have been offered any specific help for the psychological  side of  your cancer treatment? We have just accessed a clinical physiologist through the hospital. I have  had counselling in the past to deal with several close bereavements but we are finding it very helpful as it's more than just listening she understands the science and reasons behind your feelings. I know it's not for everyone but  I thought I'd mention it. 

keeping the faith for everyone 

Milly

Hi JaeinKent,

Its totally understandable- I think we all (patients and famil/carers) have experienced these emotional times. Having this group certainly helps as we are all on the 'same page'. In our experience,  an emotional day or two, often is an opportunity to go back to the drawing board and try to refocus on the situation and plan of action. 

We have found that fresh air, change of scenery or if possible a walk in a nice place, can help massively. 

Good luck

Lee

Morning y'all

wow - have we all be quiet recently.

i am really trying now to only log in once a week , as I was daily, sometime more.  I guess it is about trying to move on? Who knows (:

Tabnabs- what an awful disappointment, you had probably 'accepted' the original plan, then hopes raised for a complete stripping, then being literally stripped of that., although hopefully by being on this board  you"'ll be 'comforted'somewhat by the fact that there are a lot around with 'inoperable' doesn't mean 'hopeless' just means different- so you'll get nuked when the beast gets Bolshey-there is more than 1 way of slaughtering the beast. There are a few around on this bored and others that are 'inoperable' , nuked, then d'visable' disease free.

I guess I have been quiet this week too as the 'emotions' have come home to roost. We are both feeling quiet low and tearful. It is of course completely reasonable for the whole year to catch up with us. As we now have finished with ( for now) all the treatment our brains are probably a bit empty of thoughts, so the good ole brain finds stuff to fill the gaps.

Despite knowing full well the reality, it doesn't make it feel any better, we are obsessed with it coming back, now isn't that rather 'indulgent', but it is not helping to know the reality. We were thinking about counselling, but no amount of it will change the reality of what we have been through. We have deliberately kept busy making plans etc, but we are for now quiet on that front. Spending more time sitting down.......... thinking!

Jae of Kent- I totally get and understand your meltdown- they are good for the soul, I would actually love to have one to clear this brain of mine, but even that is not happening- as I tell people I feel like I am swimming through glue!
No doubt we will work it though somehow- as I always say " what choice do we have"

sort of keeping the faith (:

Hilts

Hi Hilts, 

I get what you're saying/feeling. I guess when we are in the thick of it we are on 'auto pilot' but when we 'relax ' a bit after positive news, we then spill the emotions!

I think having the news of esophageal cancer is enough to break anyone- and there's no shame in that.

We find that keeping focused but also having 1/2 days in a week where we don't mention cancer at all,  really helps. 

I guess there's no right or wrong way to deal with this but a lesson my Dad has always taught me is 'only worry about things you can do something about ' 

Lee

Hi leechamps

yep, you are absolutely correct.

Auto pilot is defo the thing- I even went to work the whole time- it was distraction, but absolutely on a mission too. Now I am finding work far more stressful that i did during, even though the work etc is exactly the same.

We know ALL  reasons and rationals but the old brain just doesn't see it that way. The worst thing about it, is that we were 'lucky', job done (for now), so I should just be grateful and stop feeling sorry for myself, but hey that is the rational side of it.

It WILL wash through, I suppose we ( our brains) are processing the whole thing and we are in a 'quiet time' - it is probably the first time since treatment , and diagnosis really ,that we have had the time just to sit down and errrrrr think. 
I know we should just let in come and process, but I hate the glue feeling, but as we all know human emotions are pretty spectacular things..

I know deep down that I am okay, but (always one ) I just need to 'accept' that this is okay and will blow over.

i have already broken my own once a week log in rule, but hey we all reach out when in need.

Keeping the faith sort of (:

Hilts