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

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

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 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