Hi,
I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.
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 Andi,
The previous posts have given you some good pointers. My husband is eating normal food, he came home a bit further down the line from the op but I've been pretty amazed at the variety of food he eats. Smaller portions but before the latest chemo over half a normal portion and our portions tend to be on the larger side lol. Trifle, milkshakes and cream cakes are a good boost. I also put skimmed milk in the whole milk (as advised by dietician) for extra calories. He also had forty sips but to be honest it just depends. He has fruit and veg too and finds tinned fruit easy if he's feeling a bit full.He has also eaten steak pie, fish and chips, roast beef dinner etc. He decided to wait until the end of treatment before trying the alcohol.
Dieticians will give you a sheet and are very helpful. Your team will ensure you have all the info you need.
Hope you get your fitness test done soon
Keeping the faith
Milly
Thank you Milly - sounds as if your hubby is doing really well - fingers crossed I do as well. The operation and more chemo are a bit daunting - but I just have to focus on 2022
Andi xx
Hi AndI,
I was very overwhelmed by it all at times and it is daunting. However lots of people have come through it and recently which helps. What happened to my husband was very unusual but they sorted him out.
He has one more round of chemo next Friday 17th fingers crossed and then recovery and hopefully some normality after nearly a year. Diagnosed end of last October.
Take heart - you will get there. If you can it's good to gain some weight and walk too. If you're eligible for any vaccines it might be worth asking your doc if you can have them before your op.
keeping the faith
Milly
Hi Milly
Yes I am trying to walk to get a bit stronger - was totally inactive due to chemo but had a broken humerus bone just prior - and spent 6 weeks (and nights) just sitting on my sofa - so very unfit!! Really trying now - having flu jab tomorrow.
sounds as if your husband has had an exceptionally bad time - so glad his treatment is nearly over
Andi x
Hi Andi
Yes he has been through an awful lot, even more than we anticipated but NHS and surgeon have been excellent and the actual operation has been successful.
Oh dear re breaking your humerus bone! Glad your able to walk definitely worth the effort. Makes you feel better too getting out in the fresh air. We are all behind you Andi and it sounds like you have a loving family and friends supporting you too.
keeping the faith (the mantra from Hilts which I've pinched)
Milly
Hi Andi, I don't know if you will have anyone around to make you meals, but you will no doubt feel quite tired. So easy things to prepare and eat like tinned condensed cream of chicken soup, cream of tomato soup - the condensed soups are thicker and smaller in bulk. Also, you can get tinned steak in gravy. Sorry it may sound hideous, but actually the meat is so soft it's quite nice and you only have to open a tin. You could have with mashed potato, grated melted cheese. My husband found anything bready impossible, but maybe you will be ok with that? He also liked soft boiled eggs with lots of salt and pepper.
Well done getting through the pre op chemo, it's so tough, you've done amazingly. The hair loss is distressing and upsetting. If it helps at all, my husband who didn't have much on top to start with seemed to have a bit more after chemo was over...and his beard grew back too. Unfortunately lost it all again on the second lot, but it sounds like from bfg and Hilts it will come back again eventually.
SallyX
Hi Milly, so glad you can drive about again, what a relief that must be. Husband has his last chemo session this Monday, so we are limping along to the finish line. Hope you're both on course too.
sallyx
Hi Sally,
Yes it is a relief! Ankle still swells but fracture clinic doc said it would but not as painful now.
Hope all goes well on Monday and yes the finish line is in sight for both our husbands fingers crossed.
Will be thinking of you both on Monday.
Keeping the faith
Milly
Thank you Sally - that is a help as I live alone - so will get condensed soup - would not have thought of that!! Also the tinned steak. I realise I won't be able to drive for a while - so need something in - then I can get deliveries for a while. It's the unknown!! It sounds as if you are nearly out the other side - must be a relief for you.
This site is so helpful
Andu xx
Hi Andi, hope you're well.
I'm a week home, post op now so can share the following from my experience so far with you which may / may not help !
The first 5 days post op, I was nil by mouth and fed intravenously via TPN (total parenteral nutrition) via an IV on my neck.
During this time, all I could have orally was the hospital equivalent of giant cotton buds dunked in water to suck on, when my mouth was dry / or I got thirsty. All I could think of during this time was an ice cold glass of cola and I craved an ice cold drink so badly ! BFG kindly encouraged me through and helped man me up a bit !
It was fine though, and completely understand that the surgeon wanted those days for the join to heal as best as possible and I didn't get hungry, the TPN was doing its job.
Around day 5 and I could start drinking water, apple juice, black tea etc and some vegetable consommé soup ...it gave me a whole new appreciation of a lot of things I'd always taken for granted !
My first mouthful of ice cream on Day 6 was whilst I was on FaceTime to my Wife (no visitors were allowed due to covid, still) and I got all emotional eating something so delicious after 6 days of not having eaten anything - so it ruined my tough guy image to my Wife
After that, I moved into what my surgeon called Free Food Diet for a day, to see how my re-plumbing coped with it ... he explained it as anything that fell off a spoon was OK ... ie. yoghurt, ice cream, jelly, soup etc.
Once he knew I was OK with that, ie. no retching, sickness etc he moved me to what he called the Soft Diet the next day.
This means anything like Cottage / Shepherds Pie, scrambled eggs, weetabix, porridge, fruit smoothies, pancakes with honey, soft pasta, soft noodles etc all OK.
A good trick my wife did was using kids meals from COOK :
My surgeons dietician said to me that for the first few months to aim for a quarter of my normal portion size per meal sitting. So, we figured the kids meals are half the adult portion size, so you can just whack one in the oven, cook for 30 mins, serve and eat half of one and then 30-45 mins later finish the second half.
the bonus is they taste amazing as they're all freshly prepared with great and nutritious ingredients so not only are they very tasty but you know you're eating very well, too.
my favourites so far at meal times are the Cottage Pie, the pasta Bolognaise, the chicken tikka and the chicken and orzo pasta. I definitely recommend these in the first few weeks at home as make cooking at home so easy and convenient whenever you need / want to eat.
Also, as another guide - have a look here, my surgeons dietician gave me a copy of pages 3 & 4 which is what I've been following at home and no real issues so far :
I'm a week home yesterday and in terms of things to get in, I'd echo what everyone else has kindly shared with you - tinned steak is a good one too. Heinz tomato soups, Heinz tinned spaghetti as well is good. If you do an online shop, I'd recommend ordering some milkshakes in, good for adding calories as a snack and also the Haagen Dazs mini cups are great to snack on, soothing on the way down and a great way to add calories to your day too. Also Twirl and Wispa chocolates are easy to eat, melting in your mouth so don't cause issue and add calories as well as maize based crisps like Skips and Quavers that melt in your mouth too as a quick snack !
I hope something in there is of use and helpful to you !
Hi Andi, hope you're well.
I'm a week home, post op now so can share the following from my experience so far with you which may / may not help !
The first 5 days post op, I was nil by mouth and fed intravenously via TPN (total parenteral nutrition) via an IV on my neck.
During this time, all I could have orally was the hospital equivalent of giant cotton buds dunked in water to suck on, when my mouth was dry / or I got thirsty. All I could think of during this time was an ice cold glass of cola and I craved an ice cold drink so badly ! BFG kindly encouraged me through and helped man me up a bit !
It was fine though, and completely understand that the surgeon wanted those days for the join to heal as best as possible and I didn't get hungry, the TPN was doing its job.
Around day 5 and I could start drinking water, apple juice, black tea etc and some vegetable consommé soup ...it gave me a whole new appreciation of a lot of things I'd always taken for granted !
My first mouthful of ice cream on Day 6 was whilst I was on FaceTime to my Wife (no visitors were allowed due to covid, still) and I got all emotional eating something so delicious after 6 days of not having eaten anything - so it ruined my tough guy image to my Wife
After that, I moved into what my surgeon called Free Food Diet for a day, to see how my re-plumbing coped with it ... he explained it as anything that fell off a spoon was OK ... ie. yoghurt, ice cream, jelly, soup etc.
Once he knew I was OK with that, ie. no retching, sickness etc he moved me to what he called the Soft Diet the next day.
This means anything like Cottage / Shepherds Pie, scrambled eggs, weetabix, porridge, fruit smoothies, pancakes with honey, soft pasta, soft noodles etc all OK.
A good trick my wife did was using kids meals from COOK :
My surgeons dietician said to me that for the first few months to aim for a quarter of my normal portion size per meal sitting. So, we figured the kids meals are half the adult portion size, so you can just whack one in the oven, cook for 30 mins, serve and eat half of one and then 30-45 mins later finish the second half.
the bonus is they taste amazing as they're all freshly prepared with great and nutritious ingredients so not only are they very tasty but you know you're eating very well, too.
my favourites so far at meal times are the Cottage Pie, the pasta Bolognaise, the chicken tikka and the chicken and orzo pasta. I definitely recommend these in the first few weeks at home as make cooking at home so easy and convenient whenever you need / want to eat.
Also, as another guide - have a look here, my surgeons dietician gave me a copy of pages 3 & 4 which is what I've been following at home and no real issues so far :
I'm a week home yesterday and in terms of things to get in, I'd echo what everyone else has kindly shared with you - tinned steak is a good one too. Heinz tomato soups, Heinz tinned spaghetti as well is good. If you do an online shop, I'd recommend ordering some milkshakes in, good for adding calories as a snack and also the Haagen Dazs mini cups are great to snack on, soothing on the way down and a great way to add calories to your day too. Also Twirl and Wispa chocolates are easy to eat, melting in your mouth so don't cause issue and add calories as well as maize based crisps like Skips and Quavers that melt in your mouth too as a quick snack !
I hope something in there is of use and helpful to you !
Good to hear Redski, you're heading in the right direction
Lee
Thanks Lee, really appreciate the encouragement !
Hi Redski,
So good to hear from you and pleased that the op has gone well! You sound like you are doing really well. Great tips for AndI too. Soup is always a good one but I hadn't thought about condensed soup as Sally suggested.
Keeping the faith
Milly
Thanks Milly, appreciate it.
Yaaay, Redski.
You're back too. X
There are a few more still MIA- hopefully for good reasons.
Nice one- job done. My husband said same sort of things " best bit of grub he'd ever tasted" etc.A boost as well- it only gets better ( okay maybe not during the post op chemo !). But food progress is fairly quick . mine is now 9 month post op and 6 months end of post chemo, he eats EVERYTHING (:
As for the 'new plumbing' husband will eventually learn ( I live in hope!) that he really needs to eat smaller portions grrrr. He has had this cough since op and after much wondering turns out basically that he eats to big potions all at once and there is no **** room for any more = coughing ,as irritating the airway as it is stuffed to the top ! HOWEVER, he is most pleased that beer seems to help swilling it down(: He needs to 'learn' to eat big in the morning and not in the evening ............. I give up grrrr.
Anyway, really shouldn't complain.
Well done to you and nice to see you back
Keep the faith
Hilts
PS - Millie- would it be a powder blue shade? , the online retailer beginning one whose name can also be found in South America???- if so, yes, it is brilliant- a great coming home pressie or in my case , his xmas gift (((::::
This is where I absolutely struggle too, Hilts - same as your guy ; and I need to learn ... eat smaller and slower. I still have the same appetite I had pre op and find it very hard looking at a plate of food and not want to vaporise the lot. So much so, after I got my surgical staples out last Thursday in London, I found myself in Nando's sat infront of a plate of a quarter chicken and chips - perhaps a bit too bold !
I ate half and doggy boxed the rest for later and was OK ... but I do find if I eat too much or too quickly I get a bout of the hiccups that are very annoying whilst my body is trying to process it all, like you say with your guy but his is a cough.
Just have to be patient, remind myself what we've been thru and take it slowly when eating and being sensible with portion sizing - which is where the kids COOK meals really come in handy as the portion sizing is easy and my wife refuses to let me eat more than half of one without 30+ mins in between sitting 1 & 2 ... and in fairness when she does that I don't have any issues (and I'm not sure she'll let me go rogue in LDN again solo, haha !)
Last tip (for just after op) I found useful is my surgeon got me onto chewable vitamins too, to help make sure levels are maintained ... and I know and appreciate opinion here is divided on them, but for context I like them because they taste like sweets and worst case - they can't do any harm so I'd rather errrr on the side of caution and take them !
Hi Redski
thank you so much - loads of tips and ideas of food to get in. That was really kind of you - this is all so helpful when everything is so scary and unknown
Kerp eating
Andi xx
Try not to worry or be scared Andi.
Like someone said to me, you won't know anything about it and will wake up, out the other side and can just focus on rest and recuperation.
I went down to theatre walking with and talking to the anesthetist and he put a cannula on my hand, said he'd give me 'a little bit of champagne on board' (his colloquialism for some initial anaesthetic) to relax me ... well that was all OK and was the last thing I remember talking to him as he said that ... next thing I knew, I woke up in CCU with my surgeon talking to me about how it'd all gone.
Youll be great, stay positive and keep walking forwards you're doing well.
Thank you - I will x
How is everyone getting on ?
Hope everyone is keeping on trucking forwards on their respective paths.
