Dad's eating post op!

Hi, i have to say your dad is doing amazing already, I had the op in 2020 and was 8 days in ICU and 3 weeks in hospital followed my 3 weeks nil by mouth at home with a chest drain in too! The surgery usually causes the vegus nerve to be cut, as a result I have never felt hungry since, I set a 2 hour timer on my phone to remind me to eat etc. Finding the right food is just trial and error, I couldn't eat much of what I was told to eat by the dietician because of dumping. I lost 8 stone over the treatment but luckily I had 8 stone to lose! Just stick with it, what your already doing is great, both of you try to keep a positive mind set, but make sure to take time for yourself, it can be tiring for those doing the caring. You are doing a great job

Hi 

It sounds like your Dad’s doing really well considering it’s only a short time since his op ..My husband is eight months post op and it’s taken all this time to build up his eating regime ..He relied on his night feeds for a year in total (he was having them five months pre op though) ..We found it to be a trial  and error experience in the beginning and built it up slowly over the months ..His weight is now stabilising without the night feeds ..He lost three stone in total and is now stabilising around 8lb under his normal weight ..You do worry when they’re of a slim build already so I do understand how you’re feeling as I was the same .

My husband no longer feels hungry since his op ..I’ve read this is a common problem after a oesophagectomy but he eats whatever I serve him ..Sometimes he can’t manage the whole portion and sometimes he can ..it varies on a day to day basis ..I learned to prepare in advance  and batch cook so I no longer feel I’m in the kitchen all day as I seemed to be in the beginning..Like  you’ve said it’s a learning curve  .(I still think just hooking him up was easier lol .) 

It’s taken us eight months to build up to this 

Supplementary milk shake around 8 am 

one slice of bacon and one egg (fried or scrambled) 10.30 am 

side  plate sized portion of meat or fish & veg 1.30 pm  

snack 3.30 pm 

side plate sized portion pasta dish or mild curry dish or a sandwich or .jacket potato  .. 6 pm 

Supplementary milk shake 8.30pm or two hours before he goes to bed 

When we’re  at home we try and stick to this regime and then just tweak it as and when we need to ..It seems very regimented but it comes naturally after a while .He also has his drinks in between meals as he finds if he drinks with meals it fills him up too quickly .He still manages a glass of wine in the evening too ..His dumping episodes have diminished over time so I think we’ve finally found a formula which works for him .

They certainly don’t call it a life changing op for nothing ! It’s  definitely been just that ! 

 Just to add I think you’re doing an admirable job in supporting your Dad ..He’s lucky to have you ..Wishing you both All the best in the coming months 

regards J 

Thank you so much for that advice. It does help to know what others like your husband have found works. I know it's a total learning curve but already we've found (like you) that eating and drinking need to be separate, as dad has said he feels very full, almost regurgitating what's gone down.

It's hard and we're just trying to find a way through that works for dad. I do feel 2 nights of dropping the tube feed is more than enough for now, as I don't think he's making up enough calories during the day yet. Just waiting to meet with the consultant and the oncologist to see what the post op biopsy has shown. Fingers crossed for positive news.

Can I ask how long it was for your husband before finding out if he needed more chemo after surgery? Did they suggest less than before the op?

Thanks for that HullEng. Appreciate your advice, especially about the timer. It really is trial and error. Dad has always loved his porridge on a morning and still managing to eat that, but he needs to wait before having a coffee we've found, otherwise it's just too much.

I'm not sure dad has experienced too much of the dumping yet, but it does worry me. Can I ask what it makes you feel like when it does happen?, and how you deal with it, as it sounds far from pleasant!

Hi .He had his surgery on 14th December ..His surgical  follow up appointment was three weeks later and his  oncology   appointment was then two weeks later where he was offered adjuvant chemo ..He had his first cycle in February ..He only completed two of the scheduled four as he had some adverse reactions during the second cycle including a severe lung infection  ..both he and his oncologist took this as a sign of enough is enough !  ..He’d also experienced joint problems during the first four pre op chemo cycles and during the adjuvant chemo this became worse ..We have since found out (from a recent X-ray  ) that he has  developed osteoarthritis in his leg joints ..in particular his knees ..He now walks with the aid of a walking stick ..He’s been told this is probably due to the chemo ..We’ve also been recently told that his post op pathology results showed the cancer wasn’t as advanced as originally diagnosed and he probably would not have needed the adjuvant chemo . I think there was a delay in his results coming back and this caused the miscommunication between the two hospitals .

However we don’t dwell on the ‘what ifs’  ..He's on a positive path now regardless of his mobility issues and hopefully the new meds and ongoing physio will prevent the osteoarthritis from worsening ..He’s here and that’s all that matters .

regards  J 

Hi, thanks fir the reply. I find porridge the best thing in the morning too. But I wait between 30mins and an hour before I drink anything after I've eaten. Because of the way the stomach is orientated drinking pushes the food through too quickly and can cause dumping. I get a sick feeling, I got hot and start sweating and my pulse starts to race. Best thing then is laying on the bed, laying down slows the foods progress and after some time I'm good again, I usually fall asleep and I'm there about 2 hours. I find the evening meal most likely to cause problems. I eat little and often, every 2 hours if I can, the stomach is much smaller so the body needs feeding or I just burn out of energy. The best thing is to drink before eating, maybe tiny sips if you need help swallowing but nothing more. It's hard to remember, I still mess it up even after 3 years but I've gone from dumping every day to 1 or 2 a month and always my fault. 

As I said, he sounds like he's doing great and so are you but don't rush anything, it takes as long as ir takes, everyone is different.

Another thing is to keep meals small, don't over load!

Good luck with everything and always ask if you have questions. Does he have a specialist nurse he can call, mine are great and so helpful 

All the very best to you both

Hi again, am sorry your husband had such a bad reaction to the chemo, but like you say, at least he's here and fighting on. I know my dad is hoping to avoid more chemo if at all possible but we're expecting that he'll need it. Think he'd much rather do 2 cycles than the full 4 but we'll see. 

I can't actually believe how quickly time has passed since dad was diagnosed back in March. He's come a long way to this point so would hope the chemo would be the last hurdle to get over. Fingers crossed! I wish you and your husband continued positivity on your ongoing journey x

Thanks for explaining your experience of this HullEng. Yeah it doesn't sound nice, but dad is starting to realise eating and drinking together don't go well. Smaller portions are also a new experience to him. I sometimes make meals in a slow cooker and lately have given dad a much smaller plate of it. I feel bad in a way that he's eating much less than we are but I know it's all he's capable of, so it's all about adjusting to a new normal, and that will take time as you say.

Thanks again for sharing.