4 rounds of chemo finished now hubby's big operation looming

Hi, hopefully you will get some more replies from people who have had a TG, I had a sub total in April 2024 and found this book very helpful - The Art of Eating without a Stomach  By Dr Peter G Thatcher its full of tips and suggestions,  I would consider preparing some soft foods and freezing small portions as when he can start to eat it will be little and often for  a while, wishing him all the best 

Hi it’s really good that your husband has got through chemo! The book recommended by Sop was a game changer for me.  Eating tiny amounts at first and not eating and drinking at the same time was important.  I started with two or three teaspoons and gradually increased it. Soft foods for the first six weeks but I ate things like porridge with coconut milk and bananas for breakfast, avocado for lunch and mashed potatoes with mince or fish in the evening.  High protein and calories were key.  You gradually increase the amount you can eat. 
The medical team will advise. 
Lots of people in this group have got through it and now eat and drink normally.  Hopefully they will share their experiences too. Good luck!

Hi Jac

Thank you so much I'm going to pop those food items on my list to buy in for after his op, I do need to purchase the book too. 

I think we kind of put this major operation out of our heads while he was having chemo and I was so happy he seemed to sail through that with only few minor side effects, the medical team said it was great how strong he was I think it's just hit us now the reality of the next step. Not sure how long they wait to do the operation after last chemo but they seemed to suggest it will be fairly soon, honestly had in head be 2/3 of months  x

It’s absolutely terrifying but I found it easier than chemo.  I was 60 and went back to work on a phased return after six weeks.  I focused on getting as fit mentally and physically as I could before it!  I walked a lot as the gym wasn’t for me! I wrote a blog which you can read if you click on my name.  I now eat and drink much as before but smaller amounts.  
I had my surgery two months after the last chemo.  

Hi, my husband (now 56) had TG in September 25, we had been prepared for stage 4 but when pathology came through after they removed his stomach it was T-3 N-1 M-0.  He had been unable to have chemo beforehand as his spleen had been affected.  It was explained to us that when the cancer perforated his stomach the contents of his stomach at that time spilt out around his abdomen causing collections of infection particularly around his spleen and caused pneumonia in lungs(which  was what had led to investigations and diagnosis).

Anyway, he has had a tough journey with virtually every possible post op complication BUT that has just been very unlucky.  During his 15 week hospital stay, I saw and spoke to loads of people who took this operation in their stride.  People who were walking about the ward and eating meals a few days after the surgery. I’ll not lie, sometimes I was upset about this as it seemed so unfair as my husband was younger and fitter than they appeared to be.  He also struggled with some resentment that he had walked in for the surgery like your husband feeling completely well and healthy  (obviously he wasn’t) He mentioned this to his consultant a few times that he wished he had taken the 6-12 month prognosis he had been given pre -op, however his consultant was very clear after the surgery that it would have been 9 months tops and that wouldn’t have been necessarily feeling well.  My husband had zero symptoms of stomach cancer, it had been pneumonia that brought him to doctors and once he had antibiotics he felt well again. Thank God for the follow up CT. He was told he would likely have died suddenly, painfully and horrifically from gastric bleed.  As awful as that sounds, it did actually help my husband accept that the operation was the only option we had. 

In the last fortnight, he has had his jejustomy feeding peg out and is now eating completely orally. It honestly is remarkable how he can eat a fairly normal albeit smaller and more frequent diet.  We also bought the Dr Thatcher book, though haven’t used it much tbh. I bought a new food processor thinking I would need to blend a lot of foods - turns out this was completely unnecessary. The dietitian will keep you right and when he is in hospital you will see how he fares with food there and what he fancies to eat.  My husband took crazy notion for ribena when he was nil by mouth, it went on and on and when he was allowed to, I brought him in some, he won’t drink it at all now! One of the nurses told me that sometimes this happens, it’s almost like intrusive thoughts, like he was talking about ribena all the time and just so bizarre as it wasn’t something he would have drank. Still no idea where that came from!! But just sharing this as tip not to stock up on too much as I now have quite a bit of ribena in my garage! 

My thoughts are to treat yourselves now at this stage doing the things you love and eating all his favourite meals.  We joked about having a fortnight of “death row” meals where we ate in a lot of our favourite restaurants! For us humour has lightened some of the darkness as it’s all very heavy.  

It sounds like you are being so supportive and encouraging, he is so lucky to have you.  It is a dark time but also one when I believe we became closer.  Be kind to yourself and take support from others around you.  People are so kind and want to help.  Not sure if you have kids, but I know that was a really hard part for me, being strong and always putting a positive slant on for them as they were so worried and hurting and when he was in ICU for 4 weeks (then another 10 days few months later) they couldn’t visit so I shielded them from how ill he really was. Medical science is unbelievable- honestly what the NHS has been able to do is phenomenal, yes there’s major difficulties with the system but when you’re in and very ill, they are nothing short of miraculous. 

All the best for your husband and for you too. You got this xx 

Hi, thanks for your reply, what a journey your husband has had and yourself to support him thank you so much for sharing and so sorry you had to go through all of that.

It sounds strange but I'm taking comfort that your husband also has these thoughts of not wanting the surgery as I started feeling bad that mine was being selfish and nearly having an argument about it but I get it's their body and life that's changing and its is going to change massively.

We are going to have a big Sunday dinner today, one of his favourites, thankfully I can still get a laugh from him usually me saying something ridiculous so il keep that going! He's always been the chef in our house loves making various meals so I think he's struggling with that too.

Thank you for your tips, that's really interesting im very much the same would think oh let's stock up on that if it's helping so il be careful not to go overboard. We unfortunately don't have kids but he has his elderly parents and I'm doing my best to shield them and thankfully his brother and sister have been great in keeping an eye on parents and coming to see us. 

It's now the nervous wait for operation date we find that out on Tuesday. 

Really grateful for you sharing your story and continued healing and health to your husband x

Is he adamant he doesn’t want to talk to people who went through it? If not, I could ask my husband? Because he was exactly the same not wanting the surgery and expecting the worst from it. 

Anyway, some useful links for you (also, the book is good, and we got some good leaflets from the cancer nurse as well): 
https://ccr.cancer.gov/surgical-oncology-program/clinical-team/diet-and-nutrition-after-gastrectomy-your-plan
Dietary advice after a gastrectomy (PDF)

https://opa.org.uk/recipes/

https://www.ooso.org.uk/meal-idea

https://breakthroughcancerresearch.ie/cancer-diet/

Hi, he's going through not wanting help or talk to anyone at the moment. He's always been quite closed of. I'm hopeful at tomorrow's appointment he will start opening up once we have the surgery date. 

I honestly think he feels he's protecting us all but it's not. Thankfully his brother is also going to come along so he's quite good at getting through to him, thank you for the kind offer though I will certainly keep that in mind if he keeps being stubborn! Sorry you went through same with your hubby. Did he start to talk to people ?

Thank you so much for the links I will have a look at them and hopefully hubby will have a read xx

Hi

i I had chemo in 2024 then Ivor Lewis surgery . By the time of the operation the tumour had shrunk considerably. I had 11 hours of surgery and 9 days in hospital on various drips etc. apart from getting pneumonia I was fine despite them taking most of stomach and a couple of inches of oesophagus. 
Back home, food intake was regular small portions of stuff that’s easy to swallow and I lost a lot of muscle and fat, about 3 1/2 stone in total. I started building up my activity , walking etc. I was meant to have a second bout of chemo but they decided against that due to neuropathy caused by one of chemo drugs and also because the first chemo and surgery was very successful. I started back training again in July 2024 and am back living completely normally. I’m biking, playing golf and I’ve just been on 3 ski trips. I’m fitter now than I’ve been in many years and I can eat and drink what I want, including beer / wine etc. I got on the Sarong trial so have CT scans every 6 months and annual endoscopy, all fine. Tell your husband that his life will return fully and it’s just a process to go through. Sounds like they found it early like mine, so he’ll be cancer free in no time. I saw plenty of people in a worse state than me in hospital and feeling sorry for yourself is pointless. The NHS were fantastic in Leeds and I feel so lucky to have found it early. I’ve become a grandad recently and life is great. 

did you get neuropathy? I had 6 rounds of chemo before ivor lewis surgery My neuropthy is terrible