New to all this, I am confused and concerned

Hi, I’m so sorry to see your going through this, I have non Hodgkin’s lymphoma so different type of cancer, I wanted to reach out to you and send you love and pray you get the answers you need. 
Tracy.

Thank you for your thoughts.  I am sorry to hear about your own situation. 

Hi

Welcome to this group! You will find lots of support here including people who are living without a stomach!  I had a partial gastrectomy four years ago and now eat and drink as normal.  I have been abroad on holiday too!

A full gastrectomy takes more time to adjust but you will get lots of advice and support. 
I wrote a Blog of my treatment which you can read if you click on my name 

Its hard to imagine but you can live a normal life without a stomach!

Do you have a treatment plan?

Hi Confused N Concerned so sorry you find your self here, I’ve joined this forum for my husband ( he doesn’t really do socials)  4 weeks ago yesterday he had all his stomach out “total Gastrectomy”, he had 5 hr op on the 11th Jan and was out of hospital 7 days later, he had an epidural so had no pain, he had lots of tubes In him, they gradually came out over 5 days and whatever was left in came out on the 5th day. He was up the day after op just sitting in a chair, next day was walking. He didn’t have chemo before or after as as surgeon said over 75s don’t do so well with chemo, he’s 80 in April. He said been in hospital was a breeze!! well looked after. He came home on the Wednesday and by Sunday he was in Wetherspoons having a coffee. ( at the moment he’s sanding a chair down and painting it)  Since been out of hospital he’s had a cold and a lot of stuff on his chest, I think if he’d done his breathing exercises more often that would have helped. His only problem is he’s not eating enough, so I’m now kinda making him eat ever 2 hours like he should have done from the start. Also going to try and get the ensure drinks from the dietitian again, he came out of hospital with a load of them. I think you have to find a new way of eating to keep your weight up but most people say eventually you’ll be able to eat bigger meals. 
My husbands cancer was found as he has yearly CT scans for kidney cancer, Lymphoma cancer showed up so had a PET scan then stomach was found, Lymphomas on hold now till April. 
As I said if it wasn’t for the eating he’d be doing very well but I’m sure we’ll get that sorted.

He came out of hospital with a feeding tube that was never used but had to flush it 2x a day also do the blood thinning jabs. We went back to see the surgeon 10 days ago and the feeding tube was took out. I think both yours and my husbands cancer was in the same place where the stomach and Oesophagus join, that’s why it all has to come out and a bit of the Oesophagus.

His operation was at Notts hospital and can’t fault them, anything else just ask. X

Hi, sorry to hear about your diagnosis. I had stage 4 signet ring upper stomach cancer diagnosed at 53 in November 2021. I had 4 rounds of FLOT chemo before I had my stomach removed last April, followed by 4 for more rounds from June to July. It was difficult to start with, to eat and get back to being active, but now I’m back to eating everything that I ate before my operation, in small portions (chew a lot) and I’m walking 3 + miles most days… I’m glad I had it done. I’m now in remission. Hope this helps? Ask me any questions and I’ll try and answer them for you… 

Take care

Michele 

Michele did you lose weight after the op, my husband lost nearly a stone while In hospital and now losing it gradually, we don’t want to lose anymore really, did you eat every 2 hours and what kind of food would you have had, thanks xx

Hi Sue, yes I’ve lost 3 stone in total but probably due to chemo as well, mind you I was a wee bit overweight before hand as well, so I’m a healthy weight now. I’ve managed to stabilise the same weight for 6 months. Yes I try and eat every 2 hours (if I remember) I normally have porridge/cereals for breakfast, then 2 hours later a piece of toast, then lunch homemade veg soup with grated cheese on top. Later some biscuits or oat cakes with cheese spread. Tea/dinner I’ll have stir fry with mince meat (easy to chew) with rice or noodles. Later a yoghurt, tinned fruit or ice cream. Then last thing I sometimes have bread sticks with soft cheese or crackers and cheese. 
I’ll make some lasagna, chilli, bolognaise, plain fish with chips. The toast I have is sour dough only I can properly digest. I also snack on crisps and nuts. I love jelly too. 
I couldn’t use the protein shakes in the hospital as they caused me to have diarrhoea. 
Hope this helps. 

Michele 

Thanks Michele that’s very helpful, I’ll give some of them a go, x

Hi Jacquiw, thanks for your support.  I understand that a full removal is very different from a partial.  Certainly both are challenging, but eventually, with a partial, things get back to more or less normal.  With a full removal your life is forever changed and that is the part that worries me.  I never see any honest, direct message on what that means.  What I have read is more like generic fluff "you live a new lifestyle" and things like that.  What does that mean?  To me I hear 'forget about the simple joys in life. You will never be able to enjoy a full meal again.  All you can do is it a very small amount on a near constant basis.  Forget about ever going out and doing something as simple as eating a hamburger because at best you can have 1/8th of it.'  These are the thoughts I hear in my head, but I have no idea if they are accurate.  Hence confused and concerned,

I want to thank all of you for your replies, I really appreciate the information.  I am in Canada so the timing of my responses might seem a bit off as I think most of you are in the UK?  I am finding all of this really valuable.  I am 6ft tall and about 195 lbs, if I have the conversion right that is about 14 stone, so I could afford to lose a bit of weight, not much.  Can you tell me what the day to day living is like without a stomach?  Is it hard to keep eating every 2 hours?  What foods do you have to stay away from?  How small are the portions you can manage in one sitting?  Is there a degree of uncomfortableness by having the food completely bypass your now non-existent stomach?  Is going to the bathroom an issue as your stomach is no longer there to assist the digestive process?  I know, so many questions!  My apologies for that, but I am truly confused ... and concerned.

Thank you for your time in responding to my questions.  Your information is all good, even if sometimes the answers are tough to hear - and I do want to hear the 'tough' answers as well as the more cheerful ones!  

Also apologies for my one big generic reply.  I am used to forums where you can reply under each and every individual message so that you can give an individual reply.  Doesn't look like you can do that here, or if you can I just haven't figured out how to do it!  ;-)