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

Mmmm - the mind boggles heehee xx

LoL

The godfather - when the horses' head is put in the bed ! (:

Definitely - teehee

Hi again [@Hilts]‍ , [@Milly58]‍ and all you good people.

Well we went to see the surgeon today, well his understudy and was told he has 2 years to live without the operation by using chemo / radiotherapy.

If he can have the oparation it'll be tough. He won't be having chemo before or after because of his age 79. He has his staging laparoscopic tomorrow and IF there's no scar tissue from having his kidney out 4 years ago . IF the Limphoma surgeon says his radiotherapy can wait a few months and IF there's no spread he can have the operation at Notts, (has anyone had it there) 

So tomorrow it's a day at Lincoln hospital for staging.

At the moment I'm just numb and really hoping for some reassurance from  you all and what do you think about the operation and no chemo providing it can go ahead.

Thanks xx

Hi Sue, Hilts, Andi and everyone,

Sue - We on here know what uncertainty and the feeling of being overwhelmed  feels like so all your feelings are to be expected. Re chemo - every patient is different and it could be that the tumour is small enough to operate on without it. What I think we'd all say is that they don't do this operation lightly as it's a big one so your husband must be pretty fit at 79 to be considered for it. The good thing is you appear to be on a fast track as the waiting is  just awful. Some on here didn't have post op chemo as either they didn't need it or weren't offered it for various reasons. Everyone is treated as an individual. I hope you have some good news today. Re Hospital there are two in Nottingham. I know on this forum understandably they don't allow you to say which hospital treated you. 

Everyone thanks for your good wishes for my husbands procedure today. Great news - no cancer but found 3 small polyps which were removed but they don't believe they are pre cancerous. Absolutely relieved doesn't cover it. My husband was so good at keeping calm, taking the medicine and getting it done. No sedation so I'm now off out with ex work colleagues later (which I had cancelled) as I wanted to make sure Kev was OK. He's now having a lie down as he was up at 4 am to drink the galopy mixture. 
Again this forum helped me to sound off as we didn't tell anyone.  We did tell our sons he was going for a colonoscopy but not until 2 days before as we didn't want them worrying. 

keeping the faith for everyone 

Milly

Millie

yyyyyyaaaaaaayyyyyyy xxxxxx

i am soooooo pleased for you ( and Kev of course) I hope he 'enjoyed' his bowel prep- frankly a hideous idea (: and experience- I remember it from back in my nursing days - Sunday evening was pre op night ergo bowel prep night! Back then the whole ward was given it !  I think I would say it always worked well LOL.

Time for another amazing holiday for you I think xx

Keep keeping that faith and onward 

Hilts x

Amazing news Milly, fantastic for Kev and yourself and you deserve that night out tonight ... whilst he deserves the lie down on the sofa watching the football !

Hi all,

Thanks and yes Hilts Caribbean in January! 

Still keeping the faith for everyone 

Milly

Caribbean sounds amazing Milly and much deserved !

We are off to Cyprus for Xmas with the In Laws.

They emigrated there 8 years ago and I haven't seen them in 3 years now because of covid initially, then my treatment last year and being immunosuppressed ... so, it's my first holiday and time away abroad for 3 years - am really looking forward to it now.

Fabulous Redski a well deserved holiday for you all too! Have a wonderful time!

keeping the faith

Milly

Fabulous Redski a well deserved holiday for you all too! Have a wonderful time!

keeping the faith

Milly

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