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 Everyone.

after 1cycle my only real problem is acid reflux between 12 noon and 5pm every day. I think I am doing the right things like eating slowly and softer food for lunch, + fortisip, and I also have the fortisip and Ames savoury soup to add to normal food. As backup I have a prescribed Peptac liquid which is equivalent to Gaviscon and which coats the stomach lining. My main "defence" is Omeprazole from my GP and the dosage is 2 once in the morning.  I am posting this to give my experience of omeprazole together with peptac.
The issue is this. The omeprazole is not sufficient. My GP says don't take 3 per day but use the Peptac instead of a third omeprazole. Peptic instructions say clearly not to take other medication including the anti-emetics within 2 hours of peptac because it inhibits absorption of the other medication. Any schedule changes I make would not quite fit in stop the pm acid reflux. This will be surmountable so any bright ideas ?

walter Mac

Hi Walter-Mc 

Welcome and glad you found us! I'm afraid I don't know what to suggest but others on here may do and if not I would suggest that you speak to your cancer or GI nurse specialist as they are fountains of knowledge!

keeping the faith

Milly

Hi Millie

as always I contacted my upper IG before anyone. Their suggestion was one in an then one in early evening which didn't work, then they were unsure so suggested taking 3 a day. That won't work because the prescription was not from the hospital but came from the GP who said unequivocally don't take three. So that is why today I asked for anyone on the forum. for good ideas. 

keeping the faith, the only way is up !

Hi y'all.

welcome Walter mac. To the oesophageal club. Hope you find it as useful as most of us do

In fact I have just been for a long weekend in the big smoke, and where is the first place I come when back? Here.

We (husband = victim, me = watcher and resident chatterbox) are out the other side - for now, I always say that, feel like I'm 'jinxing ' if I don't. After 9 months of treatment he is (for now) active/ visable disease free. A year ago last week, we got the shock, sudden diagnosis at the age of 56. Started treatment on 5th September finished on 23 rd March. What a 'spectacular' year it has been. We still look at each other and think what the heck just happened.

Most on here are pretty fit people, the diagnosis coming completely out of the blue, bit of sudden food clogging and bob's yr uncle adeno.

I can probably come in on your 'omeprazole' issues. We are generally NOT a good example to follow, as we do 'tinker', but given the diagnosis, we thought 'well, the worst is happening, so let's just try things.

Husband started before diagnosis on 20mgs, of course it did nothing, it was only once the 2 nd chemo was given did his food clogging improve, but of course with the blockage in decline, the GERD increased. He would take his omeprazole in the morning and quaff a load of graviton of an evening. Since surgery and post op chemo, he still has the reflux, but he now takes 80mgs of omeprazole, 40 in the morning and 40 in the evening. Recently, he has not needed the gaviscon. Also what does sometimes 'escape' is not acidic. So doing it job. Omeprazole does take time to work, about 3 weeks I would say.
Millie- yep the 2nd round/ post op chemo is pretty grim, but of course it will be doing its job. So now 'only' 2 more to go FOUR WEEKS. Then the recovery , both physically and more difficult emotionally,really begins.

One thing for us- anyone have info tips?
Husband eats pretty well, BUT, he can't seem to hold on to much weight. His big losses came during the post op chemo. He muscle loss is quite noticeable, his butt has vanished , legs like sticks, he didn't have much to play with before!. Eats loads of protein, fat etc, but nah, still skinny.

Any tips?
Anyhows laters folks

and keep keeping the faith

Hilts x

Gosh - I posted the following in the wrong chat:

Hello to fellow rollercoaster riders,

I’m still chugging along – but more of me later!

JaeInKent – hope you are coming out of the feeling like youknowwhat for the first week after chemo.  Glad that you are not on the new-age food anymore – it feels like a bit of a free pass for me at the moment, eating what I want, and the missus keeps threatening to remove it and get me eating “sensibly” again as my weight is relatively stable.

leechap – great news on the shrinkage.  Loss of appetite is a big problem – certainly in the months post op it almost seemed to be the teams biggest concern that I didn’t lose too much weight as it leads to other problems on vitamin and mineral deficiencies. Even now, I enjoy eating mostly and have gotten into a routine for eating – but if I don’t eat, I don’t miss it (I don’t get the rampaging hunger that I used to get). I too was given a sample pack of the Aymes – with a view to getting them on prescription.  A couple of them were palatable for me (vanilla being 1 and chocolate being the other), but the rest……..  Fortunately, I ate food so didn’t need them.

Milly – what are you trying to do to us?  Hope your ankle is improving!  I bet that big boot is fun – gosh, I wonder if they do a boot for me if anything happened to my ankle – best not find out. Delighted to hear about hubby too – I was the same on the 2nd round of chemo, right of food for a few days and then picked up afterwards ready for the next bout.  The dumping syndrome is odd – I found when I understood the dynamics of why it happens quite interesting

“Early dumping syndrome can occur because of the dense mass of food that gets dumped into your small intestine at an earlier stage of digestion. The intestines sense that this food mass is too concentrated and release gut hormones. Your body reacts by shifting fluid circulating in your bloodstream to the inside of your intestine. As a result, your intestines become fuller and bloated. Diarrhoea often occurs 30 to 60 minutes later. In addition, certain substances are released by your intestine that affect heart rate and often blood pressure, causing many of the symptoms of early dumping. This can lead to lightheadedness or even fainting.

Symptoms of late dumping happen because of a decrease in blood sugar level (reactive hypoglycemia). Reactive hypoglycemia is low blood sugar caused 1 to 3 hours after a large surge of insulin. You are more likely to have dumping syndrome if you eat a meal heavy in starches or sugars. The sugars can be either fructose or table sugar (sucrose). Insulin levels can increase to high levels, and then lower your blood sugar too much.”

I tend to get “late” syndrome, but not all the time.  I had chocolate cake (that was almost pure chocolate) at a restaurant on Saturday without any problems and again for 11’s this morning.  Last weekend I had a problem after a beer and a few crisps, so go figure.  It has certainly eased off since the early days post-op.  I have mixed fruit muesli for breakfast every day – and have yet to have a problem post that.  If I get it, it’s usually either mid-afternoon or late evening.  And sometimes, I can just rest when I get the palpitations and sweats, and it just eases off.

And congrats on the anniversary! 

My news is that my partner and I got hitched last October after 33 ½ years together and have only just told our friends (hence a party on Saturday).

Tabnabs – great news on the progress and congrats to your son – 1st class! 

Hilts – holidays in the Sun, weekend in the big smoke!  What’s it like? I don't know what to suggest for your hubby.  I've settled around 118kg, and have also lost a lot of muscle definition - certainly the legs are skiinnier (born out by the skinny fit jeans I've just bought).  I've started working out again, but its slow progress.  I will hopefully be building up the stamina over the coming weeks and will get advise from the missus on how things are looking.

Walter-Mc – it’s interesting that your reflux tends to happen 12 – 5.  How does it tie in with the eating?  Do you eat differently for breakfast/lunch/dinner?  Trying to find a pattern to what works and doesn’t is a challenge and google can come up with multiple answers – go for a walk after eating to let gravity do it’s thing and have a lie down after eating to slow down the movement of food through the stomach (mind you this is post-op).  I guess it’s a case of working out any patterns and trying different things both food wise and movement wise to see what works for you.

Apart from that – I am now 5 ½ months post op and 2 months post final cycle of chemo.  All good – I still have not managed 4 pts yet.

Cheers all. 

bfg

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 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 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

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!