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Oesophageal Patients Association
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9 weeks post op !

Hi guys , I'm finding it desperately hard to remain positive, I'm so miserable and sad for my husband ....I do nothing but cry. We naively thought that Chemo then the surgery were the hard part but the mountains to climb just get higher and higher. The constant "dumping " syndrome and the stricture from the scar tissue is a nightmare. Just had a 2nd balloon down to stretch but after only two days he's vomiting again as food is getting stuck as bad now as it did with the tumour! If anything it's worse ! The only period of time we had a "normal" life was after the Chemo when the tumour had shrunk.

We just can't seem to get anywhere.....and Chemo is due to start in a week for 9 weeks solid ...it's already been postponed because of the "stretch" He does everything hes told ....eat slow , soft diet ,chew well .....how will he ever get strength back ..or cope with the Chemo ! So worried. All he can manage still is soup and very little else , how do you ever progress to eating more solid food.?

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Debbie

Trust me. It does get better. It takes time, tears, fears and then some but, it does get better. I am now three years post op and pre / post op chemo. Life is not the same but it is better than where you are at today. These are very early days. I had another stretch last week. But I play 18 holes of golf every week, walk my two huge dogs for 6 miles every day and still manage to piss my wife off every time I open my mouth.

Hang on in there. One mouthful at a time. Keep asking here.

Good luck.

Bruce xx

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Debbie

I've just read Brian's post, I had my surgery and chemo two years ago. I was in the deepest depression, I live on my own with children living close by and I thought I'd reached my end. Today, my life is different, I still work, I know the food that doesn't agree with me like ice cream, yoghourt, what i would call 'mushy' food as it comes back as quickly as it went down so there's a certain amount of diet adjustment. I walk 7 miles every Saturday or Sunday, joined a friendship group and have walking week-ends away with some lovely people. 'Dumping' is the pits and I still get that, it's not pleasant so I breathe my way through it. 9 weeks post op I was still in such a pit; my jej feed tube kept blocking which was appalling.

Please just take one day at a time, when I look back now it's as if it didn't happen to me. Life will most definitely improve.

I send my love to both of you xxxxxxx

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That made me smile 😊 thank you so much!! .... I know we must be patient but it is bloody hard isn’t it !?

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This is only early days still - I did not have the post op chemo as I too ill (I had a lot of serious complications) though I did have chemo before. I can eat a normal diet bit just have to avoid certain foods.

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Debbie,

Like Bruce says, hang in there, it really does improve, may be by tiny steps. I tried to eat too much too soon and ended up back in hospital. Ok so your husband is only able to eat soup so work on that, slowly make them thicker, add small pieces of veg and maybe meat in but do it very slowly. As long as he is getting the nutrients and eating something it’s a good thing. Don’t try to run before he can walk, it will only frustrate and could set you back. Speak to dietician at hospital, get more nutrient drinks if he can suffer them and take each day as it comes. Have snacks available all the time too.

You can get through this

Z

Xx

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Hi Debbie

Have you got a copy of the OPA's recipe book which gives you a lot of ideas for soft food?

Like others say 9 weeks is quite early. It takes time to get over the operation. It isn't easy but it does get better. I am four and a half years on and feeling mostly fine nowadays.

Haward

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Debbie I can only agree with everything above, and add that you are in such a good position compared to those that have an inoperable version of the cancer though understandably one doesn’t see that clearly. Look at the glass half full and enjoy what foods and liquids work ( wine and whisky I found helpful though not once chemo started). The operation your husband has had is a huge one which takes a year (at least) to recover from so take it slowly, and focus on nutrition that works. I had a feeding tube left in after the op which went straight into my bowel..I guess your husband didn’t but I’m sure something can be done along those lines. First step would seem to be see a dietician perhaps ?

The digestive system has been radically disturbed by the procedure the professor at my hospital said that usually this settles back down more or less after two years . I am three years post op and it is still not plain sailing. All good advice in the posts above.

Good luck xx

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Hi Debbie

So sorry to hear your despondency but as others have said, it will get better. Really.

I am 4 and half years since operation and still experience some dumping but it's mangageable and is almost always after eating something I know I shouldn't (cake/ice cream etc). But the first few months were so incredibly difficult as I live on my own and so the support from my family and friends was immeasurable - plus the dietician at the hospital in Worthing (thanks to Macmillan again) was amazingly helpful. Catriona once even met me in a corridor in the hospital as there were no rooms available for a meeting and I was so desperate for information and reassurance as I was struggling so much. They are there to help so do please ask.

Over the months and years you will both learn so much about portion size and what to eat, just believe that your husband has been through the worse, the operation is one the the hardest the body can take, let alone the hit of the chemo beforehand. I only had 6 days of the post-op chemo as I came the decision it was not for me, so don't fret about that for now.

I am 55 now and am back to my job as gardener (albeit less hours a day), also work a 9 hour day in a farm shop once a week and have just started my 2nd year of study as a Nutritional Therapist - exhausting just thinking about it ... it just takes time.

The main thing is you have each other and I'm sure, in a couple of years, your husband will be giving advice to others on this site!

Vicki x

Ps. I have the most fantastic book - 'Covent Garden A Soup for Every Day' 365 recipes one each day of the year so he'll never get bored with soup! Less than £4 on Amazon if you think it could help.

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You are quite entitled to have a bloody good cry over all this! It is an enormous strain on you as well as your husband, but all the attention goes towards the patients rather than the quietly suffering spouse! It is indeed a really hard thing to keep positive. You have to be realistic about what is going on, and it does not feel like a 'cure' at the moment. Some people are more fortunate than others in relation to the scar tissue, which does seem to be a very personal thing, different from patient to patient.

They will no doubt do another stretch, and sometimes these have to be repeated a good number of times, but they will want to be very careful about not overdoing it on any one occasion.

There is a period of trial and error, not only on the eating side of it, but also on how the new digestive system will cope, and how the doctors might do further procedures to improve things.

The progression to more solid food does come, gradually, but you will have to be very careful about the texture of food, and I imagine at this stage you should simply stick to what will go, and stay, down. The vomiting is so exhausting isn't it!

There are nutrition drinks that can be prescribed, and to some extent it is a priority to take in nutrition in liquid form, sip by sip, so that your husband can at least have a basis of nutrition to support his healing. Taking in solids will come, but you will probably have to leave it for a while.

It is also hard when you have them back home without the hospital there to take responsibility and give advice. It is natural to worry, but you do also have to try and find a way of looking after your own strength and welfare. Recovery from these operations can become all-consuming but it is to a large extent outside our control how well and how quickly / slowly the body heals itself.

The dumping syndrome is something that can be influenced. There are some factsheets on the website that may help. opa.org.uk/pages/factsheets...

Lowering the added sugar levels in food (and regarding him as if he were diabetic) can really help, but you will probably have to keep a food diary, and I am sorry to say that it may not be compatible with the favourite foods that he once enjoyed so much.

People often wonder, at this stage, whether anything has been achieved, but it sounds like you are in a normal sort of 'dip' in a normal path of recovery. Generally it is not any failure to remove the cancer that is causing the problem; it is the body's reaction to the traumatic effect of the surgery.

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Hi Debbie, sending you a hug. Things will improve. Sometimes we also get anxiety about food and that stops food going down. Try a couple of spoonfuls at a time. Mash potato was my main food with very soft meat or fish,veg mixed in. Its like weaning a baby. Bananas help with the dumping.Becareful with the sugar and fat in things which cause the dumping. I am 19mths post op and still suffer fron dumping. I cant have full fat milk yogurt or ice cream but can eat cheese. Speak with the dietician.

I too had a feeding tube jej in until after chemo but it wasn't used.

Good Luck

Debbie

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Hiya there is a light at the end of the tunnel my lovelies! I am 4 years post op. Get dietician's help and hospital. I won't reiterate what's been said already. Slowly slowly and get nutrition drink supplements to build up for next round of chemo. YOU WILL BOTH GET THERE WITH OUR SUPPORT! Lots of love and hugs Angi Xx all the way from Benaulim Goa! Xx

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Hi Debbie

My husband had the IL op two years ago and and your post reminded me how upset we were about what was happening. He was trying to cope with the pain and worry with the operation and chemo and I was so upset about what he was going through and I constantly played out in my head about what life would be like afterwards.

We live a 'new normal' now and sometimes even an 'old normal' on the many good days he has.

Please remember to look after yourself, talking to family and friends helped me to get from one day to the next and this website is so invaluable that I still visit it regularly for reassurance.

Macmillan drop- in centres always have someone who will listen and pass the tissues which sometimes was all that I needed to get back on track

best wishes to you both

Marion

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Debbie, my heart goes out to you both. I have stomach cancer and going through pre-op chemo at the moment. I can't offer any advice on your husband's situation but I am sending healing hugs. You take care of yourself too. I believe that this damned disease is harder on the carer than the patient. Cry when you need to and don't feel guilty about it. From what the others on the forum say things will get better, it's just hard to see it at the moment. One step at a time.

Hugs,

AM X

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Hi Debbie,

From your post I am assuming your husband didn't get his stent fitted?

I'm so sorry to hear how distressed you feel, and I honestly understand. I reached a point when my husband was still on a ventilator( in hospital), when I thought that I would rather he died than suffer any more. I cannot believe I have written this because it seems very callous and self centered. Partners go through a great deal, especially if you are trying to spare other family members some of the grief. I used to go up the garden to cry whilst watering the plants after coming home from the hospital,(an 80 mile round trip on bus/train) this was despite having the most wonderful friends and family who would have done anything to help me. The problem is that there is nothing much that can be done just now, other than to grit your teeth , carry on and imagine that in a few months you are likely to be in a very different place. Consider getting something from the doctor - I went and mine gave me some tablets. I never took them, but just felt better for having someone acknowledge that I had the right to feel depressed.

Remember that having hit rock bottom, the only way is up - even if it feels inch by inch.

If your husband doesn't cope with more chemo, don't be afraid to ask it to stop. Not everyone is able to complete it and it is not a sign of weakness or failure. As all have said, stick to soup if necessary, any calories are good ones in this fight.

I know the temptation is to give all your energies to his care, but in the long run you will feel better if you can find some time for yourself now and again - a walk, a swim, a coffee with a friend, a film - whatever gives you a break.

All good wishes and a hug from me. You will both get there in the end.

Elaine XX

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Don’t give in. My dad had his stomach removed almost 3 years ago- and he’s still here. Fighting for his life. He’s Eating normal food but small portions. You must be patient., it’s a long slow process. Baby steps. Try lots of different foods. Soup was not good for Dad.he eats Lots of eggs , fish pies, lots of stews very mushy . Sometimes hardly anything, sometimes good portions. Also talk to a dietitian. They really helped us. You can’t OD on Creon, the enzyme to help digest food.

You could also try Lentinex too. It’s a mushroom juice that helps the immune system. Especially good if you’re on chemo.

Be brave . It’s the hardest thing you will ever do, supporting him.

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Hello there Carol, I’m interested in a product you mentioned recently called Lentinex - I have looked it up on Google - lots of interesting information especially for people starting chemotherapy (which I will be doing very soon) but I can’t find where to obtain the product from (or any pricing)

I’m going to do a post explaining my current position but just wondered if you might have the information about Lentinex to hand.

Many thanks

BlondieB

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Hi

The company is called Glycanova. They are Norwegian. Email them at Info@Glycanova.com.

They will post it to you in UK. Each 50ml bottle of liquid costs £10. Take 2ml daily while on chemo. It has No smell or taste just Add to Tea or water. Taken while having chemo keeps your immune system working. It’s a dietary supplement.

Seems to Extend life. Check out research on clinical trials in Japan. Routinely given there.

Good luck

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Hi Debbie 🙂 My Dad finished post op chemo 12 days early a few weeks ago after ending up in hospital unable to eat without being in pain. His weight had dropped from around 11stone to less than 9 1/2, about the same as my Mum and they were both very despondent. He has had 2 spells in hospital on a drip in 2 weeks and we were all despairing. He's been out of hospital almost 2 weeks and things have already improved massively. He's eating really well, has put on around 6lb in weight and is much more positive.

Take each day at a time, keep asking for help from the cancer team and just keep reminding yourselves that this is temporary and that ultimately this is life saving treatment. It's a rollercoaster but it will get better xxxx

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Thank you all so much for your reassurance it really is comforting. It helps so much to know that this awful period WILL at some point come to an end ....just as you all say ..be patient !

Xxx

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It's probably too early in your husband's recovery for this tidbit to do much good, but I have found that dumping is much reduced if fat or protein are taken in with the sugar, so, for instance, in my case, moderate amounts of ice cream are no problem whereas candy or baked sweets are. I found this to be the case only six months or more past the operation however and all my chemo was pre-op. Best of luck.

Worth

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