Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Hi everyone, my husband had his staging lap on the 6th Dec, we never see the surgeon after so I'm guessing it goes to the MDT meeting, hopefully get to know by the end of next week. 
Today we received a pamphlet about the procedure, it really scared me.

What other tests will he have to have, he's had CT, PET plus staging lap. Does he have to have a fitness test or things like that.
If you remember it was found through his yearly CT scan for his kidney cancer, also at the same time they found he has Non Hoskins Lymphnoma.

Its good to talk to anyone who's been through it and come out the other side.

Im getting ahead now but the cooking when he comes home is reall worrying me, in fact I'm so so scared xxx

Hi Sue,

Firstly, yes it is very scary BUT there are quite a lot on here who have come out the other side. 

I don't think you do see the surgeon until you are actually being offered the operation. Yes MDT meetings we had to wait for a lot of them and it is very difficult. Yes I think everyone had the Fitness test. My husband was diagnosed at the end of October 2020 and started Chemotherapy end of January 2021 met the surgeon mid April and the Oesophagectomy on 4th May 2021 so a long time! 

Re food most on here had similar initial feeding post op but again not all the same. My husband didn't have any night feeds and had a Jeg when in hospital but never used it at home. He was in hospital longer than most.  Others had a Jeg before the operation and used it at home after for a while too.

The best advice I had although not easy to do is to take it a day at a time and at times it was an hour at a time. The waiting is awful - and as you know we've had a bit of that again recently. You have a dietitian to help you and the upper GI team we had were excellent. 
I hope it helps to know that we on here 'get it'. Try not to Google and ask the experts at each stage. 

keeping the faith 

Milly 

Thanks Milly, I'm still scared but the infos very helpful. Xx

Hi y'all. 
I am barely breathing here watching the football! Wow.c'mon the Dutchmen (:

SueCC- Of course you are scared, bit strange it you weren't- the emotions experienced through the whole thing were crazy . The full spectrum - anger, joy, optimism, pessimism, tears, laughter. Don't worry about feeling what you do, just go with it, it is okay.

Glad the lap is done. Another item- ticked off, We didn't see the consultant until MDT D day. That's when you get the verdict , if you like. They'll tell you the clinical staging and what they can do about it.

it truly is a surreal time, but here we still are having gone through the mill and out the other side. Look back on it and still can't belive it was all real! I struggle sometimes to remember what exactly happened in what order.
The fitness test is what they do pre op, if surgery is part of the plan- but you'll find out more on MDT appointment. If questions pop into your head- as they do, frequently- then jot them down to ask- as you'll come out of there saying " I wish I'd asked that" 

I totally agree with Millie in that we certainly do get it (: and about google and the net in general- what a horror show- doesn't reflect on the reality at all.

When is your MDT?
Always keeping that faith

Hilts

Hi [@Hilts]‍ , husband was cheering on the Duchmen as well but not to be.

The MDT meeting is Monday evening so hope to here middle of the week, but on the letter I had to take from the hospital staging lap to his doctor it says "proceed to total Gastrectomy " so that to me says take his stomach out, am I on the right track there?
Does everyone have in a letter with all the things that can go wrong it name quite a few, like having to have a feeding tube for ever, lots,of awful things also with a 50-60% 5 year survival rate. It makes you sit up,and think, I don't think he can have chemo with having one kidney and lymphoma pluss his age 79.

Anyhow thanks for answering me, Take care x

Aha, Sue CC

I did make me 'smile' rather when you mentioned the 'surgical risks'letter !! I remember it well- a total horror show. A 20% risk of death and other happy facts. Yes, unpleasant to say the least. Informed consent has its downsides!!
BUT our view was and probably still is " what choice did we really have" at 56years at diagnosis- in order to give best chance for getting above that age we or rather he had to undergo surgery. If he was say 90 we might not have made the same choices- if that makes sense.

Blimey though, that letter being delivered by your good self to the GP , was a tad 'insensitive' by the hospital
But if total gastrectomy is what is planned, that is removal of stomach- same ,sort of ,as oesophagectomy ,as the stomach becomes the new / replacement oesophagus during op. He will be able to eat again, but will have feeding tube for a bit like all of us on here. It wasn't so bad, husband managed it all himself and it did take the pressure off having to eat.

I would say though , if it had spread all over the place, they would not even being considering surgery, so a plus in a strange sort of way. 
Do ask the MDT , but they are likely to tell you anyway,  about any chemo or radiotherapy . Because the whole thing is so specialised toward the individual, maybe some patients just don't need the chemo for whatever reason. I think it would be fair to say all of us on here, that despite having the same condition have had differences in treatment for one reason or another, but ask them.

As for the Dutchmen, what a fantastic fight back, just watched Morocco pull it off - wow, some achievement. I won't be watching later, my nerves won't take it! Husband will be down the pub- sipping a few pints!!! He has just stuffed himself- without a stomach with steak and chips! I give up!
all faith keeping 

hilts 

Morning Sue,

You are on the right track there ! Total Gastrectomy is whole stomach removal, which is the procedure I had ... so if you or your Husband have any specific questions, concerns or need help with anything - feel free to ask.

I was in for 9 days post surgery, fed intravenously via nutrition drip bags overnight for 6 days whilst nil by mouth while the join inside healed and then transitioned onto normal food and discharged. 
 

There's a lot of information shared earlier on through this thread of foods I was eating when I first got out which might be helpful to you to read back through to understand Total Gastrectomy journey etc.
 

A run across the rooftops of my journey etc is on my profile if you click on it and if you want to know anything else, happy to help out.

[@Hilts]‍ you make me laugh about your husband stuffing him self before the pub. Gives us hope.

[@Redski]‍ thank you so much, I'd got into kinda of thinking Ivor Lewis was the operation every one had no matter what was coming out! then realised that couldn't be. So what I've read on here most people seem to have had the Ivor Lewis, Does that still include the stomach or part of it and the Oesophagus coming out or does it depend where the cancer is in it.?

As I said if my husband can have the operation its his stomach that'll be coming out. I'd be interested to know how long your operation lasted for. He was told he won't be having Chemo I don't know why maybe as he's 79 and only has one kidney also Lymphoma (found same time as stomach cancer) but I will ask when we get his results.

Its the MDT meeting tonight and I really hope we get his results this week.

I read all your posts this afternoon Redski and the kids meals sound interesting , I'll look into that. That's one thing that's scares me the food, will I get it right, I've read about Dumping syndrome and it sounds so very frightening. 
Do any nurses come and see you when you're home? I think I know the answer to that though, 

Really nice to know you're there, could I message you if need be Redski?
Thanks everyone for all the answers you give so very helpful at a very stressful time xx

I think the surgical procedure varies by tumour location, size and also the surgeon doing the operation.

My surgeon does robotic keyhole but in my case he decided to do the old fashioned, open procedure and was weighing up between the Ivor Lewis and a Total Gastrectomy and in the end for went for removing the whole thing,

Ivor Lewis removes most of the stomach, but leaves a small portion of it behind to serve as a pouch / pseudo stomach.

My op was 8 hours on the table, but that included live histology in the lab, to check for clear margins (think dry rot removal on wood!)

Don't be frightened, its OK ... and if you need anything else - just ask, plenty of experts with bags of experience between DoogGreg, Hilts, Milly, Andi and the gang.

Hi Redski, Sue and all,

As we all say everyone is individual. My husband had Ivor Lewis but initially part by keyhole on abdomen and open at the back. He had half his oesophagus removed and a third of his stomach with everything moved up. Surgeon said his remaining 2/3 of stomach is now located near his second button on his shirt! He is able to eat/drink pretty much anything now fingers crossed just a bit less. 

Sue we chose to have an electric bed as we had originally ordered a new normal bed before diagnosis. He has found this brilliant. You can get wedge pillows which he has for going away both solid and inflatable. You get VAT off bed due to medical reasons. 

keeping the faith for everyone 

Milly

Hi Redski, Sue and all,

As we all say everyone is individual. My husband had Ivor Lewis but initially part by keyhole on abdomen and open at the back. He had half his oesophagus removed and a third of his stomach with everything moved up. Surgeon said his remaining 2/3 of stomach is now located near his second button on his shirt! He is able to eat/drink pretty much anything now fingers crossed just a bit less. 

Sue we chose to have an electric bed as we had originally ordered a new normal bed before diagnosis. He has found this brilliant. You can get wedge pillows which he has for going away both solid and inflatable. You get VAT off bed due to medical reasons. 

keeping the faith for everyone 

Milly

Hi Milly

That's useful to know - may look into the bed. I'm finding it harder to get over the last surgery - becoming a recluse and very down. Usually very upbeat but just so tired of being in pain now. Don't know if anyone else has had problems after a hernia operation - caused by the oesophageal last year. Where they've 'put my insides back in their right places' - apparently hundreds of stitches ( good old robot) - my bowel has gone to sleep - so uncomfortable- just want to sleep. Sorry I'm a misery - any tips in constipation. 
 

Finding it hard to keep the faith!!

Andi xx

Hi Andi,

I'm sorry to hear that you are feeling down but it is understandable after all you've been through. This time of year can be difficult too.  The bed was definitely worth buying as you can raise the top and bottom too. Useful when I broke my ankle!

Recovery can be a vicious circle as moving about will help your bowels wake up but because you feel in pain it makes it hard. I think that I've said before that my husband is part of the NHS active recovery group. They still do zoom and it is suitable for most people. Also we had psychological help via NHS but there is also Maggies. Have you got a specialist nurse that yiu could talk too? Also you could contact the upper gi dietician as they should be able to advise to help with constipation too. 

Please don't suffer in silence and just put on a brave face as it won't help in the long term - I know that from past experiences. 

I hope it helps to know we care and although we can't know exactly what you feel - we do get it's difficult. You just need some support to get through this hoop and then you will start to feel better and more positive. 

keeping the faith still for everyone 

Milly

Hey Andi 47

Bless you- I second everything MIllie has said.

you know- it's okay to feel pee'd off  and this time of the year is the WORST. Everyone going on "it's Xmas" etc, but I think most people are faking it! and feel just as blue.

However- after all you've been through you have some added extra's in the blue mood equation. Although it may not be nice, completely expected. Husband used Maggies, then McMillan, which helped , and of course the great healer is time.

You are finding it harder this time, because it's your 2nd long spell on the table! Also general anaesthetics are great ones for causing a period of the blues, up to weeks after ( that will be all those barbiturates and opiates) 

As for the 'other end' my gran swore by prune juice LOL, but there is so much out there to get the problem solved. See GP. I am a 'lover' of old fashioned senna, available everywhere. Husband used Senna to get rid and movicol to keep getting rid- sorry this is getting 'graphic' now , but I would avoid the 'bulk' forming ones given you have less space in the guts(: fybogel comes to mind- right enough of that from me.

As for the bed- We are still in original bed, but he uses one of those triangle pillow wedges, which seems to do the job- but electric beds are the business, so go for it id within your means .

Forgot to say my husband didn't have Ivor ( the engine) Lewis, he had it all done by keyhole- just because keyhole was his surgeon 'thing'- but same on the inside I guess- he was on the table 10 hours, as expected.in fact done on the  17 th it will be 2 years exactly- he was chucked out on Xmas eve.

Anyway time for some more chocs

keeping the faith 

hilts

Hi lovely's, it's Tuesday and we had the phone call as to whether the cancer had spread (as seen from the staging lap last Tue) I'm so happy to say it hasn't, I asked grade and stage but said they won't know till the operation, So I'm taking that that they'll do the op, we have an appointment next Monday to talk  I'm still scared and know I should get my big girls knickers on, while he's in hospital I'm fine as know he's getting looked after but then it's down to me to do it all and unlike you hilts I'm no nurse!  I'll just have to get on with it I guess plus you're all here x

Sorry Andy1947 that you're not so good, I've obviously got no answers cos this cancer is all new to me but just want to say hope you feel better soon, take care, 

Thanks all Xx

Hi Hilts

Thank you once again for your hints and tips - it's so good to know there are others with the same problems. I really need to get some 'get up and go' - have been bathing in Epsom salts - but need something more - and every day!! I WILL FEEL BETTER - nearly Christmas 

Andi xx

Fabulous news SueCC - you will very soon become a nurse . The NHS will do their very best - and some. Don't worry about me - just feeling a bit low - you all keep me grounded - thank you xx

Andi xx

Hi Andi, please always remember how blessed you are to be successfully out the other side of our diagnosis … your current situation is never a full stop and just a hyphen to the next chapter ! Keep going, keep pushing !

Hi Sue,

That's the best news possible. The surgeon will say it as it is but they don't offer this operation lightly and as you have seen on here people do come out the other side. 

Try not to anticipate as everyone is an individual- we found the specialist upper gi team and dietitian very helpful. There are also support groups if you feel this will help you. We had to cope on our own because of COVID and with chemo it suppressed Kev's immune system. I also broke my ankle just before his post op chemo! We even managed a week away inbetween chemo and just before his op as self catering had opened up!'It's not an easy journey and we understand your fears but take heart that people can get through it. This forum helped and continues to help me. Who did I tell about our latest scare? You guys - a safe, non judgemental group of fellow travellers as Hilts would say.

keeping the faith

Milly 
 

Thanks Milly, yes good news about it's not spread but why do I feel worse today than before,  I'm just finding it so hard, Ocupatinal Therapy phoned me up today, a lovely girl,, then I wrote down all I wanted to ask when we go on Monday, I had another look at the stomach cancer pamphlet they sent us at the end it says 1 in 3 are not cured that made me think.

Can I ask everyone if you have the cancer in your Oesophagus is that all you have removed or some of your stomach as well, I'm finding that hard to understand, I don't know if my husband will have just his stomach removed or some Oesophagus. 

Redski I know you had your stomach removed, how are you eating and managing life now. I'm so glad I can ask these questions it would be really hard without you all.

Thanks all of you for been there xx

Hi Sue,

Feel free to ask anything- we understand how overwhelming all of this is for you both. My husband was a need to know kind of guy so I was the 'investigator'. He had half his oesophagus and the top third of his stomach removed as his was junctionsl cancer. Try not to focus on statistics there are people on here who have beaten all the odds.  It is a massive operation but they are very skilled. 

Redski is definitely a good source of information for you as he has had a total gastrectomy. Your husband will loose weight. My husband managed to gain some before he had the operation as he wasn't overweight when he was diagnosed. They give you high calorie feeds and also liquid products to boost calories after the operation. You are fortunate not to have a long wait as once things kick I and many on here felt better as something was being done. As I've said we had over 3 months wait from diagnosis to starting treatment. Having said that the NHS are brilliant and the staff are very dedicated. 

keeping the faith 

Milly