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

Hi Hills x 

tips for putting on the calories if using the Aymes actasolve savoury powder soup and Fortijuice drinks prescribed under NHS.

I think these tips may be out there already but.....

Aymes says add something like 200ml boiling water. The soup is both very thick and powdery and not at all tasty. So what I do is use a 500ml cup and add the portion of Aymes plus a much more tasty packet powder soup from our supermarket. (Not allowed to advertise names) Mix the two powders together then fill the 500ml cup up to the top with boiling water. Stir a lot and the water volume sinks a little, only then does it become a tasty drink plus you get more liquid intake from one drink. The other bonus is that with so much boiling water it takes ages to cool down to an undrinkeable temperature and can be sipped easily over a longer period.

My  friendly pharmacy unfortunately supplied 120 bottles of strawberry flavoured Fortijuice instead of mixed flavours. After a couple of bottles I couldn't stand it anymore because even as juice it is extremely powdery, and the only suggestion the upper IG team dietician would make was turn the 120 bottles into a jelly ( 1 year supply of strawberry jelly - I don't think so). So the trick is to get 2 bottles into one drinking flask topped up with water to heavily dilute and which removed the powder taste. I take the flask on long walks or even sip away at home, so again both more liquid and balanced nutrition with energy. 
 

I think these tips may apply to post op patients as well as myself in pre op chemo. 

Walter Mc 

From Walter mc

i will "digest" your dumping explanation over time. It was seemingly very comprehensive.
about the drinking bit. I love a whisky and occasional beer and wine, but because I am doing chemo I have 1" of unfinished whisky left in the bottle. It has been sitting there for 4 weeks.Before cancer I didn't buy whisky very often because it would get finished within 5 days. So now I have utter painful abstinence and am highly jealous of your beer drinking ! 
good to hear you getting on fine. Cheers !

walter Mc

Thanx, 

My husband is a bit of a rare breed (: He has not ever, I don't think, taken any of those 'fortified' foods. Can't even get him to sniff them. We too had loads of them, no longer, they now 'sleep with the fishes' LOL.  He can however manage 4 pints!. 
He does eat quite well, steak, had a huge Greek lamb dish yesterday, crisps ++, just had a huge hake from the chippy, but clearly it is not enough, or maybe I am , and he is expecting it to go on just as quick as I came off. It is the muscle mass that he needs to increase, exercise is unlikely to help as that means he will just burn off the calories !!
As for the whiskey- if we've learnt anything through all of this, it really is a case of a 'little of what you fancy does you good'. If you feel like it have it. Alcohol is not a villain in adeno ( is in squamous).

keeping the faith

Hilts

Hi Hilts and all,

It's been busy on here lol. Hilts so good to hear that you're getting to do normal things. As you know we are nearly 10 months and still going so hoping we can soon be out and about. 2nd cycle of post op chemo is this Friday. Your husband is an inspiration and very lucky to have had all keyhole as it doesn't appear to be common? Same op inside I know. . It was very unfortunate that Kev had to be opened back up after having keyhole on his abdomen but he's here!  Two stones lighter and trying hard not to loose any more weight. Going to buy cream cakes today! 

I get what you mean about 'jinxing' when life becomes so uncertain you feel you  can't 'assume'.

I have mentioned this before but just in case it's 'got lost' in the threads my husband has found the electric bed really helpful. I have too as I've been able to elevate my leg! Great for a cuppa too! We chose a super king (independent singles) so single bottom sheets but the rest super king  bedding.  You get VAT off for health reasons. We got ours from a local shop and it was made in Rotherham. I would suggest if anyone decides to look into buying one be a bit careful as some who come to your house can be very expensive. Anyhows we need to find an alternative for when we go away. I've looked at inflatteable wedges - has anyone used these?

Keeping the faith

Milly
 

Hi All,

so good to hear from everyone, Walter Mc, I'm afraid I haven't much advice re the reflux situation, mine was only ever bad enough to take one omepresole, and really only when I knew I may be having rich food that day, I guess it's just trial and error til you get the balance right.

Milly hopefully your foot is healing nicely, my friend broke her arm falling over one of her cats, she said the worst thing was wearing a caste in the summer!

Hilts, as Milly said your hb, really is an inspiration, hope I do half as well as him.

Bfg, thanks for the explanation on the 'dumping'  sure going to look forward to that, lol.

Had daughter number 1's wedding reception at the weekend, proud to say that I managed to bust quite a few shapes on the old dance floor! 
In the meantime I have a scan on Thursday to see how the ablation went, still waiting to hear about a date for the big one. Also having hellish back pain in my left shoulder, so panicking that it's spread to my left lung, aaarg! 
light and love to all, keeping the faith always

Hi Hilts

I'm going to have to remember that one - "excercise is unlikely to help......".    :-)

It'll be the 'only' thing that will help to build muscle back up - a case of use it or lose it - but what I'd suggest rather than cardio-vascular type excercise is some resistance training.  There are some really usefull elasticated bands you can get that wrap around the ankles, legs etc that provide a really good muscle-based workout.  You just need to be careful with them (check it out on the well known video channel) that they don't fall off and snap back as it were...    Looks like he is well into the protein, so that again is good muscle food.

The comment I made about dumping is a cut-and-paste from a medical website - and it contained, what for me was a good explanation that fits with my particular pattern of symptoms.  It may not help everybody.

cheers all

bfg

Hi Tabnabs and all,

Great to hear that you had a good dance at your daughters wedding - must have felt amazing! 
It's hard waiting and understandable when you get pains to be worried. My husband had back pain then we realised it was from the injections they give you to do for a week. You are doing so well - good you've had some very nice distractions.

My husband has been taking part in NHS exercises through zoom before op and is hoping to re-zoom lol soon. Good idea re bands Bfg. We are both members of our local gym (I do more swimming) and classes but with COVID and the diagnosis it's on hold till chemo done. I do miss going especially swimming. Having had two new hips aged 50 and 55 I need to keep active. 
My husband is trying hard to balance everything with meds, food and exercise and he is still doing the deep breathing exercises to try and regain full lung expansion. He now hits the 4000 on the spirometer most times and with less effort so fingers crossed. He has been doing the spirometer since after first op on 4th May! 

I am going to the shops in our market town today - not walking in lol. Bfg there is a song about where we live to do with the sea and a castle - we have a castle but furthest from the sea! The name also sounds French due to William the Conqueror! 

keeping  the faith 

Milly

Hi Millie,  it's Sally here moving over to the "group [@RayB]‍  board"!  I hope your foot is getting better and you can get out more easily soon.     How is your husband getting on with it?   You must be on day 4 (a particularly bad day for us this time).  We are on day 8 of the chemo.   Husband is slightly better and went for a walk yesterday, and just gone out again today.   Side effects of the chemo are getting worse though as time goes on.  The GOG syndrome [@bfg]‍  described by bfg is more difficult and lasts longer. Very helpful to know about this though thank you [@bfg]‍.

thank you very much [@Hilts]‍ [@dooggreg]‍ [@Tabnabs]‍ and everyone else who has posted on here, it has been a support and help to me, even though i feel bad I hadn't written anything, I am sorry.

If I can help anyone going through this horrible episode in their lives by answering any questions I would be more than happy to.   Bearing in mind it isn't me with the cancer, it is my husband.   I am an onlooker, a rather weepy one at that...

Sally

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

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

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