Oesophageal Patients Association
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19 months after op, discomfort around the area where the oesophagus was

Last night we had fish and chips. No doubt asking for trouble! During the night Alan had reflux and discomfort around the area where his oesophagus would be if it was still there. He’s ok this morning but lay worrying during the night that the cancer was coming back. He feels he ‘couldn’t go through all that again’. He’s 19 months post op and everything seems to be going well. He’s fed up feeling tired but got shingles in December and the rash and pain seemed to concentrate on the area of his back where they’d cut to carry out his oesophagus removal. He’s been to the G.P. about 4 times to ask if his tiredness is normal and he is told that the effects of shingles can go on for many months. For him it’s now about 10 weeks. Does anyone have any advice to give on similar experiences? Alison (worrying wife).

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The tiredness and pain can linger for many months. An auntie of mine was debilitated by it for a long time, she was elderly but very fit and had always been very sprightly and active. For her, the pain lingered for weeks but the tiredness lasted for much longer, she became uncharacteristicly gloomy at the time and it was just over a year before she was fully recovered. If it can affect a fully fit person with no health concerns in that way, it's perhaps not surprising that your husband is having negative thoughts and worries about the discomfort that he's feeling. After any major operation its natural to be fearful if after a while something begins to 'feel different', it's most likely to be scar tissue that causes it but for the sake of his peace of mind, he ought to speak to his consultant. If he's taking a ppi for acid reflux and it isn't working his doctor might prescribe a different one, if it's bile reflux ppi's won't work and he may be prescribed Gaviscon Advance instead - but he should speak to his doctor about that. I hope this eases your worries a little, also hope your husband will soon begin to feel a little less tired and a lot more positive very soon. Spring is on it's way, that should help. Best wishes to you both.

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Hi Alison, I completely understand the worrying wife as I spent many years being one myself. I hope you are all feeling a little better this morning. From what I know, Shingles can be terrible and does make you feel tired for a very long time as it can remain in your system for months. Your husband has also been recovering from major surgery and chemo? So will have had his immune system knocked. My husband would recover for a few weeks and then get something else which knocked him for months, then gradually recover and repeated this cycle many times over, each one taking longer to heal. The older you are, I believe shingles are harder to shift. In regards to the reflux, my husband had so many issues with this and in the end needed Lansoprozole - this comes in a horse pill sized capsule. He couldn't take it so ended up with Orodispersable (melts in the mouth tablet). It made such a difference, and felt much better - sometimes he needed 2 a day, but mostly one. If he is consumed with worry, my advice would be to ask the oncologist for a new scan. Mal had them every three months or so. We loved them as it gave us a clear indication and a few months stress free in between. I hope everything goes well. Take care, Carrie

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Hi there firstly i take two Lansoprazole one in morning one at night and Gaviscon advance before bed. Eating fish and chips at night is not always good and i too would suffer from acid reflux if i eat too late at night. Shingles alone you suffer pain for many months years as it is nerve endings. The weather is cold at the moment and my scar under arm to shoulder blade aches terribly bring on the warm weather. Saying that i still go out walking. Everything we get that is we feel not normal, gives us concerns for the cancer returning. I am 2 years post op still get tired and still having tests which keep coming back normal. I am suffering excess gas up and down. Does he have 3 monthly blood tests to check levels?

Good Luck

Debbie

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The effect of the fish and chips should be a temporary thing, and is a normal reaction to living life as we would want it to be. Not worth beating yourselves up about it. These things happen.

It would be worth getting a check on vitamin and mineral levels as it can be more difficult to absorb iron and B12. This can lead to fatigue.

But it may indeed be a horrible side effect of shingles on top of feeling delicate after the surgery. One does suffer other ailments after the surgery, like anyone else, but that does not mean that the symptoms are of recurring cancer, even though it is perfectly normal to have that fear, and indeed to feel that one is regressing back to how one felt immediately after the surgery. It is very difficult but eventually you get to regain confidence in your body, and to separate twinges, aches and pains from the recurring cancer fears.

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Hi Alison, I can still not eat fish and chips without getting reflux later, but like a hangover from drinking lovely at the time but you pay for it later. I tend not to eat the batter as it seems fried foods are not my friend. Tho Alan a fellow patient could eat fried food without a problem. we are all different. I am 8 years post op and still get tired if I do too much or eat too much in one sitting, I have learnt to manage my energy and respect my body when it says rest otherwise I seem to find I get more reflux and find I can eat less which means less energy and so the circle goes round until I give in and rest for a day or so. Shingles completely floored me for ages and I was four years post op then. Take care Lizzy

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Well a week-old copy of the Daily Star always was indigestible !

Seriously - fish and chips at only 19 months is pushing it. It's the frying fat in the chips and the batter.

I can cope with chips or battered cod but not both together. So I've settled for boiled new potatoes, it's not quite the same but at least I get my weekly dose of fish oil and iodine. If I am feeling reckless I'll go for chips and pick the flesh out of the batter.

It is also wise to eat anything fatty and fried only at midday, going to sleep with such a meal in the evening is asking for trouble regardless.

By the way I am 26 years post op and still comprehensively knackered. Always remember that our lives have been changed substantially but we still have a life - and it really is terrific.

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