All the different Post treatment side effects

  • 15 replies
  • 48 subscribers
  • 823 views

I’m thinking it might be helpful if everyone would list the post treatment side effects to help others relate or settle worries they may have ? 
there seems to be more to recovery than just dumping syndrome. 
I think most of us have gone through pains and symptoms that has got us thinking the worst ie is this cancer back . 
I understand we are all different but I’m sure we can relate to others experiences and healing  and hopefully help each other through . 
thank mark 

  • Yes this is very true so from today he has to keep a dairy and cut his meals in half but can eat one half no and the other maybe 2 hours later so going to see how that works.

    Yes ivor lewis...glad youve found your way round it and the info is helpful so thank you

  • Hi Samantha 

    I know we have replied to each other before but I can so relate to much of what your partner is going through.i am 51 now and 13 months post op. 

    i don’t recognise my body anymore. The difference is  I don’t want to put weight back on (maybe that’s being a woman and I hated being overweight which I definitely was) but I also don’t like not knowing the person in the mirror.  it is a real mental struggle.  I also struggle a lot with dumping and my stomach bloats up, goes hard and hurts everyday.  I wish I didn’t have to eat now although I enjoy food when I do eat just not the effect after.  The only thing that has settled down for me is the acid.

    i had a call yesterday and they are going to do a scan to check my bile salts and a colonoscopy to check there is nothing else going on, because I am finding the dumping is stopping me doing things as I can’t eat and go out unless I know I have easy access to a toilet and I need a quality of life.  I have gone back to work but I work from home and work are not yet expecting me to physically go to meetings etc. 

    As for exercising I walk most days, not eating until after.  I try to walk at least 5miles twice a week but with work I am finding that hard. I would love to swim again but don’t have the confidence yet,  I do feel I have hit a wall now I am so tired and the long walks are a real effort which over the summer they weren’t.

    It’s hard this recovery and my husband does have to keep reminding me how far I have come.  I hope things start getting better for you both soon.

    x

  • @jacpop HI, thank you for your story it does sound very familiar to my fella.  He on the other hand doesn't want to be skinny hes trying to hold on to the weight best he can which is hard with the dumping.  

    So this week he has been writing it all down and splitting his meals in 2 and it seems to be helping a bit, along with this he is now taking the omeprazole in morning and before dinner rather than before bed and he hasn't woke up choking the last 3 nights.  Hes also not back to work he was a van driver and he def couldn't do it now with no toilet he had only left his job of 17years a few months before being diagnosed unfortunately.  

    Last night I got him to walk the dogs with me but he struggles with walking and I think the cold makes him a lot worse like you say it was a little easier in summer time.

    Hopefully when you get the scan you can get some answers to help you a long, its a long road afterwards we didn't realise this but the surgeon said last week basically "this is your new life and you have to deal with it best you can"..  We thought he would go back to normal. 

    Wishing you all the best x

  • I thought I'd add my experiences of post treatment side effects and hope it helps.

    I'm currently 7 weeks post op, due to have final chemo starting at 11 weeks post op.

    Side effects so far have been mainly chemo related. All the usual ones whilst actually on chemo - loss of taste, hair loss, debilitating exhaustion, anaemia. However, I've now started getting neuropathy in my feet too. This seems rather delayed and I'm worried it might get worse, but isn't painful, just feels a bit numb with pins and needles (if that makes sense lol). I'm not sure if it's the onset of cold weather that's causing it, as my chemo was mostly during warmer months? In any case, I find heat on my feet helps, a warm foot bath, and I also have a Revitive machine I'm using. Hopefully it will stabilise.

    Post operative I've been very lucky. Only one dumping episode early on, and nothing since. I can eat what I like now, and am already putting weight back on. However, I do still have quite a bit of rib pain. This was explained last week by my surgeon at my check-up. I had a keyhole Ivor Lewis procedure during which my ribs were 'forced apart to gain access'. He said the pain and recovery is along the lines of having broken ribs, so will be painful for a while. At 7 weeks I can feel improvement though, so am trying not to be too impatient.

    I have noticed that anything with milk in, including my much loved cup of tea or hot chocolate, has to be consumed sparingly and almost treated as 'food' rather than drink. I get tummy cramps if I consume too much or too quickly, but it hasn't caused full blown dumping. I just have to be mindful of milk.

    1. I've been pleasantly surprised at how the op has made me feel (pain aside) as I was expecting a lot more problems with eating, but for me the chemo has been far worse. Everyone is different though, but hopefully my experience can help someone else.
  • Side effects ohh gosh where do I start!?

    My husband (diagnosed with advanced and incurable oesophagus cancer) had his 6th and last chemo treatment about a month ago and is now only having Trastuzumab (immuno therapy) every 3 weeks and so far his side effects have been:

    No appetite. He is hardly eating anything at all is still losing weight which is SO worrying. I really do try to encourage him to eat but it is difficult

    Constipation. So far he´s had 2 severe cases of it. We went to see our GP surgery who prescribed Micralax and it´s helped but not until after a day or two. He´s had no pain but of course it´s been very uncomfortable for him.

    Serious lack of energy. which of course has to do with the cancer and weight loss but could also be a sign that he´s anaemic again.

    It´s really worrying times for the both of us and I´m definitely not trying to make it sound like it´s worse for me cause it isn´t! But I would SO love to get some help and support. It´s just difficult when I have always been used to deal with everything myself and don´t know where to turn and how to explain it all :-(

    Big hugs and lots of thoughts to those of you who are going through the same or who have loved ones that do