Oesophageal Patients Association
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Final day at last !

Hi folks!

The day has finally arrived when Tony has taken his last dose of post- op Chemo tablets ! he was dreading it all over again but was determined to make it through to the end. Now it’s a case of coping with the repeat stretches ( lasting a bit longer between each) and that awful “dumping “ which at the moment seems a damned nuisance in getting to grips with exactly what the cause is as this last week it seems just about anything and everything!

Just hoping that the Chemo has played a part in upsetting the whole system (as if it could be any worse) and adding to his trouble. I’d be eternally grateful for any thoughts and also any ideas on how long post Chemo before he / we can realistically hope to start building him up weight and muscle/ strength wise ?

I know it’s still early days ....5 months post op so he’s not really expecting to feel back to any kind of “well” or energy levels until late Spring / Summer at least .

All enthusiasm welcome 🧐

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Debbie

Well done to Tony & you for getting this far. I think we can all agree hat the chemo regime ending is a celebration. It can take a very long time for the chemo and it's effects to leave the system. In my own case over 24 months. But each day you start to feel better and stronger.

There is a wealth of great help on here regarding the dumping. We all go through that and it also does get easier to live with. In the early days it can start to take over your life. YOU will get used to it and and start to find what causes it in you.

My advice to everybody is the same. Keep an accurate and honest (I do mean honest, no cheating) food diary.

You will be amazed at how the smallest thing can cause the biggest problem!! That one sweet or sneaky drink can turn a good day in an instant.

We are all different and what works for one will not for the other. The general consensus of things to try and avoid.

Sugary stuff: Cakes, Chocolate etc. Obvious sugars. The can have a cumulative effect through the day. So eating one, then another etc will cause issues later at night.

Bread & cake: These can bloat you very quickly and have you rushing to the loo as well as feeling nauseous or actually being sick (in the early days)

Anything that you have tried once , that reacted badly. It will react badly the second time.

I found that after about eight months things started to really settle. I am now three years and rarely have issues, but when I do it is always traced back to what I ate.

In it's crudest terms (no apologies) "Shit in = Shit out"

Walking is great helper. It starts to get the muscles going and makes you feel alive again. I now walk six miles, seven days a week with my two dogs and love every minute of it, as do they.

Ask away on here. Every time you ask it helps somebody else to know that they are not alone.

Good luck.

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The body does take its own time to recover, which sounds very frustrating when we want to get back to normal health and strength quickly, but it does tend to be true.

When you say 'dumping' I am interpreting that as meaning the problems of insulin spikes (clamminess, dizziness etc an hour or so after eating) rather than diarrhoea. Sometimes you just have to get back to basics for a break. Try Slimfast, which sounds mad, but it will give you nutrition without the extra sweet stuff and will help to gain weight; or anything recommended for diabetics (another thing that sounds mad but it is to do with low GI index food). And the bit about 'grazing' and 'little and often' really is true. Having the food he would really want has to be put to the back of the mind. Do not try and feed him in order to increase his weight - he will be OK if he gets the right minerals and vitamins. I know you want to care for him and feed him well, but the loss of weight is not a reflection of progress as such, (despite what some dieticians may say) and over-eating can cause so many more problems.

Exercise will not seem appealing at the moment, but moving gently and progressively will help. Otherwise the body shrinks and there can be complications (eg shoulder capsules shrinking). A little bit of physiotherapy can be helpful. But an enormous amount of energy is consumed by the body's recovery process.

And do make time to look after yourself and give yourself a treat now and again, because the carers have a rotten time going through all this.

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Well done for getting through the chemo Tony and supporting him. The worse is over now concentrate on getting to a new norm. We cant get back to eating like we used to .little and often and snacking in the early days. I still have a small plate or bowl for meals. Yes we would like to have a drink with a meal but that often leads to dumping!! I still cant have any full fat milk, custard, ice cream or cream and have to be careful with cheese. Sweet foods also cause me problems.

Walking a little bit further each day is good exercise. I joined a Macmillan group at my sports centre .Had a 1 to 1 with a sports coach,12 free sessions and you can take another person with you free. Check online for local groups. Many councils provide health classes at reduced rates for people with medical conditions.

The cold weather is not great for our aches and pains from surgery so bear that in mind.

Good Luck

Debbie

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Hi there. I had a terrible time with the post op chemo and struggled to eat. It did fade quite quickly once the dreaded tablets had finished. Your husband has come a long way. All the best. X

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Tell Tony well done from me Debbie, he's a better man than me, I wasn't able to complete the post Op chemo, I had the 1st intraveinous dose of ECX at the daycase centre and then ended up back on the ward for 5 days, needless to say I called it a day then. Its not until you've been through that particular chemo that you know how bigger a deal it is to complete the whole course. Best of luck for the future.

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