My mom was diagnosed in July 2018. Her cancer was the the GE junction - so there was debate to treat as gastric or esophageal CA. She had 4 rounds of FLOT, then surgery in November removing part of her stomach and part of her esophagus, followed by another 4 rounds of chemo. Her pathology report was great! She is also in a clinical trial receiving immunotherapy.
My problem is her depression/anxiety and trouble eating. She finally had her feeding tube removed last week, and has been steadily dropping weight. She complains about pain/burning in her chest after eating.
She is also her own worst enemy, by this I mean her food choices are not always sound.
I am hoping someone can suggest something to help me help her! I don't know what to tell her anymore.
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mboisy
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I am almost 7 months post op now and doing pretty well. There are hard times with the transition after the feeding tube is out , she will need to face this . Her stomach is very small now and sits in a different place. My stomach was 1/2 a cup, pull out one and look at it . Anything more then that would cause pain and discomfort and usually was followed by throwing up . She can not drink like she use to, it is sipping all day and then save space for food . She has to eat smaller meals at at least 6 per day. Concentrate on foods high in proteins and complex carbs. High doses of sugar can lead to dumping or hypoglycemia. She has to sleep at angle of 30 degrees or so and avoid eating 3 hrs before going to bed . Use something to control the acid reflux which could cause the burning . She should eat slower and chew food very well, it will seem more like a meal. I would also start a diary of what you eat , there are apps. I use lose it to track my food intake and break down of protein and fat and carbs. My wife was my great support but I learned that I have to get involved from meals to exercise. Easy foods in the fridge, good foods, fruit, yogurt and protein bars in the cabinet. Most anything can be eaten but good choices will yield the best results. Good luck and best wishes ,
Hi I am now a year post op. The months after surgery are very tough and I spent lots of time in and out of hospital with stomach pains when I started to eat again. Please tell your mum to stick with it as it does get better. I also suffered with acid reflux very badly and still have it now but have managed to control it with good food choices and medication. I take lansoprazole and Ranatadine daily. I also think it's good advice to keep a food diary. I struggle eating dairy so have to steer clear of yoghurts etc. I have found silly things like if I have a cup of tea and a cake I have to drink the tea first and then wait half hour and then eat the cake or I get dumping. All these little tricks help me to live a relatively normal life. I am only 45 years old and have young children so I am so grateful I'm still here. I promise things will get better but you have to stay positive and learn how your body wants you to adjust and take your time. The doctor's told me it would take a year and it has but now thank goodness I feel like me again. I send lots of love .
Hi, it's a rotten time eating again after the op. Eating becomes a chore, food tastes odd, you can only eat tiny portions before you get pain and eating and drinking together is a no,no, I found that anything I could roll into a ball between m palms ie bread, pasta, sticky rice, doughnuts, cake, was not good, but then cream cakes like Profiteroles, , fresh Danish pastries, cheesecakes etc I would eat a small amount of a portion and then some more about an hour later, cheese on ritz biscuits or crackers, you must chew everything well the docs say 30 times but if your enjoying it you seem to forget to so I tried to remember to chew till it was soft. If you add powdered milk to normal milk and use it to make custard or Creme brûlée, type puddings it adds calories, add cheese or cream to mashed potatoes or sweet potatoes, boil eggs and just eat the yolks, or use the yolks as a sauce over some mash with mustard, but just tiny sized portions lots of times a day, I had a snack bag child's lunch box by me when I sat and watched TV or went anywhere, with a freezer block in it. with snacks in, cheese cut into cubes or little slices, fruit ready to eat, peeled oranges, grapes, strawberries, raspberries, etc, apple slices, pear slices, advocado, chocolate, biscuits, I loved Florentines for a while, diaryleas triangles, crisps etc, little youghurts, or the kids ones, if all I had to do was pop it in my mouth and chew I was more likely to eat it, as long as it was calories it was good, anything your mum fancies is good food if she wants to eat it, at this stage tastes change very quickly as do tolerances so what's great one week is not always wanted the next week, I would graze all day,
if the pain continues do get it checked out. Mention it to you CNS or surgeon as well as your GP. I had an infection from the feeding tube which made eating painful and made me feel yuk.
Depression is something quite a lot of us get, it's more like shock or PTSD , you have had time to deal with her having cancer but she is now dealing with having cancer and the change it has made to her, the past months have been very busy dealing with treatment and the op and chemo after the op, it's a gruelling process. I know my brain only let me deal with the treatment and getting through it, once I had finished that the realisation of what I had just gone through and where I then found myself was a bit overwhelming. it's a long slow recovery, and we all try to do too much or eat too much and then feel ill again. One step forward two steps back for a while it seems. I'm 9 years on now and went through a lot of depression, guilt, survivor guilt and frustration before finally realising my new life is good. There have been lots of ups and downs, but also lots of smiles and some silver linings. Congratulations to your mum On getting this far big hugs Lizzy xx
Hi. I had pain after eating for about 5 months. Eventually it all settles down. But the chemotherapy makes it worse for a while too. It’s best if she eats what she likes rather than being too prescriptive about it. So long as the food doesn’t make her Ill. in the beginning all food can cause diarrhoea and discomfort but that settles down although it can take time. Perhaps some people decide that foods don’t agree with them from these early days, when In fact most food doesn’t agree with you. So it’s important to keep reintroducing foods in the future to test them out.
Consider making a high calorie smoothie (1200 calories at least) each day and see how she does on it. I wouldn’t use milk or milk products in it, as in the beginning many of us can’t digest lactose after the operation. I have been able to put back weight quite fast with the following shake:
Juice of three apples, one orange, one carrot 220 cals (from the juicer ideally or use juice from carton). Liquidise first with 2oz cashew nuts (250 cals) and two tablespoons of olive oil (220 cals) one or two scoops of protein powder (250 cals) then when that is all liquid I add a banana (100 cals) and sometimes some full fat Greek yougurt (100 cals and high in protein). Obviously you can add or remove things as your mum likes until she has a high calorie drink she likes and can drink throughout the day. Some people add ensure and other high calorie food replacement drinks but I can’t tolerate them. They give me diarrhoea for some reason. (And I can hardly bear eating them).
Ice cream has been a saviour for me. I have had it at least once a day since the op. I have to take Lactojoy with it which digests lactose, otherwise I would get cramps and diarrhoea. But the Lactojoy (Amazon) really sorts that out so I can get my daily high calorie fix. It’s also quite soothing to eat.
I usually have the protein shake first thing in the morning at 6am (meta pure as it doesn’t upset my digestion) then the smoothie from 10 to 12. So that I can have lunch about 130.
One of the best things I have found for the depression is walking and change of scene. It’s not easy I’m the early days to get out but it really helps. Plus as my journey, like many others has been really up and down and stressful I have taken advantage of sleeping tablets when I need them (silnoct) and the occasional diazepam when it all gets too much. Ask her doctor what she recommends for your mum.
I also have the odd Macdonald’s. Fries and a Mc flurry the perfect high calorie lunch for us. (Don’t forget the lactose tablets Lactojoy if she has a problem with lactose like me, they work a treat).
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