Post Op. Journey

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I went through the diagnosis,  chemo/radiotherapy and Ivor Lewis operation during 2023 and now 10 months down the road from the operation. Had a few complications along the way which delayed my exit from hospital but have now pretty much recovered and returned to 'normal' life. I say 'normal' because the eating regime and the downstream effects never seem to be normal but I have accepted that and not let it bother me.  

I have joined this forum rather late but I thought maybe I can help anybody who is just starting out on this road by sharing my experiences if it will help in any way. I have also had prostate cancer for 10 years and the chemotherapy I have had for the Oesophegeal cancer  has had some interesting remedial effect on the former.  

  • Hi Anglars,

    Sharing your experiences would definitely be very helpful for those of us further behind you. I am nearly 16 weeks post-surgery now. Some details about your eating regime (what you can and cant manage, portion sizes, etc) and “downstream effects” would give me an idea about what to expect in the future. Can you enjoy a curry? What about a pint of beer or a couple of glasses of wine? Steak & chips? Roast beef dinner? These are all things I would like to enjoy again one day. Am I being naive? Thanks for any advice you can offer. CB 

  • Hi Cool Blue , Essentially I can eat pretty much all of the things i enjoyed before the operation. I avoid eating bread as I find this gives me abdominal pain. I now eat quite a lot of avocados as I believe they are quite heavy in vitamins ? My weight is very steady and hardly varies an ounce whereas before I was always putting on weight. I keep proportion sizes very small, less than fist size otherwise I would vomit. I 'graze' pretty much all day eating small snacks maybe every 2 hours. My snacks are often junk food eg. crisps and icecream ! I used to drink a lot of whisky and wine. Now I drink nothing apart from the odd half glass of beer. No medical person has told me not to but I no longer like the taste or effect. I suspect my whisky drinking contributed to my cancer- I don't know. I have been told to avoid steak as it is a bit indigestible but I was never keen on beef anyway. I think you will find you can enjoy all meals once again but you must train yourself on portion size otherwise you will always be in trouble. They are very understanding at my local pub where we eat at least once a week serving me only small portions. If i go to a strange place to eat, I don't make a fuss about portion size but leave at least 2/3 or even more of the meal. This latter might be difficult but you just learn to do it. I am told by the medical team that my body no longer absorbs much fat. As my weight is constant they are not bothered but i have tried the enzyme creon tablets at their suggestion. They seem to give me 'the runs' so I stopped taking them with no adverse effect. Essentially life is good and I find that I can forget what I went through last year. Just pleased at the incredible medical skill that saved me.   

       

  • That is all very helpful. Thanks. My operation involved the removal of the lower half of my oesophagus and the top third of my stomach. Was yours something similar? I had wondered if the remaining stomach might be capable of some stretch in the future? (like happens to people who sometimes have stomach surgery for weight loss). I was never into eating huge portions of food (always found too much food on my plate quite off putting actually) so that aspect doesn’t bother me too much. I do hate sending loads of food back in restaurants though but my cancer team have given me a card that I can show to staff explaining my situation and requesting child sized portions of food. I haven’t tried using it yet. Can I ask if you ever feel hungry? I try to snack regularly but I rarely actually feel hunger pangs like I used to. Does this ever come back? Sorry about bombarding you with all these questions but, now that I have just finished my last chemo, I am very much now thinking about what my future life might be like. Many thanks, CB

  • Think that's where I am hoing wrong  . I had my operation last August still mot got eating just right . Now got 3 Hernias which hopefully  going to get sorted out 

    But after 57 years of eating and drinking alot it was never going to be easy . But I know I will get there in the end 

    Stay Safe everyone 

    Nic nac

  • I hope you will find the coments helpful  regards eating . I find most eating places will accommodate  a smaller  portion  size once you explain your situation.  I have tried steak a couple of times  but as so often some times I can tolerate  it sometimes  I cannot.  Fried bacon is a no no and fried eggs . But other than that I'll  have a go at most things 

    Nic nac

  • If you can bear to watch it. Go on to BBC iplayer 'Surgeons at the edge of life.' Series 6 episode 4 entitled Hope. This shows the team at Southampton University Hospital carrying out your operation and you can see what happens to your stomach. They cut it about and turn the whole thing into a tube. So NO it will not stretch in the future as far as I am aware but you need to ask a medic. for a definitive and informed comment. I have normal hunger pangs now although I did not at first. I never ate any of that puree food - couldn't stand it. My op. sounds very similar to yours but I had complications and was tube fed for 2 months. Don't worry, your life will be very normal in the future but it will be a new normal as regards to eating.

    Ask any question you like. That is why I joined the forum. To help people with their concerns from an ex patient point of view.

  • Thanks Anglars,

    Reassuring to know that my appetite should come back as, at the moment, eating feels more purposeful than pleasurable. I have also lost a fair amount of weight and muscle so I need to build this back up. Hence I try to make sure that what I do eat is high calorie which kinda goes against the reasonably healthy diet that I used to enjoy. Have hardly esten any vegetables recently unless they’re covered in a cheese sauce. Is the inability to absorb fat a pretty standard side effect of this operation? I don’t think I remember anybody mentioning that! Have you been given multivitamins to take? One strange side effect of my treatment is that the high blood pressure that I used to be on medication for seems to have sorted itself out a good bit so I have stopped taking the tablets as, if I do take them, my BP drops to below normal levels. CB

  • I am 8 months post Ivor Lewis, and was lucky enough to have been treated by the surgeon who featured in Edge of Life, Professor Underwood, at Southampton. I also had Dr Kelly and Dr Noble treat me, and they are outstanding doctors. I was absolutely fascinated by the programme! But realised after why my ribs hurt for so long lol (and are still sore... Dr Kelly told me to be patient as it's as bad as having broken ribs which take months to heal). I also had complications afterwards, but it was picked up and treated quickly, with no further issues.

    With regards to eating, I am also very lucky. I can eat absolutely everything, including steaks, roast dinners and curries. Portion size is smaller, but not hugely smaller than before, but from what I gather my portion sizes weren't that big before anyway. For example, pub meals, I could only ever eat about half before, and have never been able to eat a full 3 courses! I've also always been a natural grazer, nibbling between meals. My total weight loss from start to finish has been 3 stone, so not massive compared to some. My weight stabilised about 4 months ago, and literally doesn't vary between the odd pound now.

    The only thing I do have to watch VERY carefully is milk/cream. I love a cup of tea, used to drink about 5 a day. However, I can only manage 2 small cappuccino size cups a day now, and if I go over that I get instant nausea. Yesterday I made the mistake of having 3, and a Mars bar. It gave me the first dumping episode in 6 months! Never again! The combination of a bit of extra milk and the sweet Mars bar was too much, but lesson learned. I had a lamb chop, sauté potatoes and veg for tea afterwards though, and kept all that in with no issues, and feel great this morning.

    I am taking Omeprazole twice a day, and Forceval vitamins daily, and have been told this will be lifelong now. Not an issue for me, I feel good on them, no side effects thankfully. Also my bloods have all been consistently good since.

    I've also been incredibly lucky in that I do still have a normal appetite. I was warned I might lose this, but haven't. (Hence the Mars bar - I hankered after something chocolatey lol, so appetite can be my downfall).

    Finally, I was told that although two-thirds of my oesophagus and the top third of my stomach is gone, it IS still possible for the stomach to stretch. However, this can cause other issues further down the line, so is to be avoided at all costs... hence keeping portion size small. It can cause the stomach to sag if it stretches too much.

    This is my story so far, and having read some of the replies here, also hope it helps. I am also on the SARONG trial, in the intensive follow-up cohort, so am being monitored and scanned every 6 months for 3 years (I had my first trial scan last week). This is in Southampton too, and I'm over there on 3 July for results and first meeting with the SARONG team there :-) 

  • Yes the rib pain does finally ease. I had a nerve dead area that lasted about 8 months. Glad you got something from the programme but you forgot to mention the fantastic staff in HDU and E5 !!

  • Yes, I did! And they, too, are fantastic. Did you have your op in Southampton? There were 4 nurses in particular that I got on with and had a laugh with too, they made the lengthened stay bearable. I was only in the HDU for one night, and most of that was drug dazed and I don't remember it lol, just that it was beautifully quiet compared to the ward!

    Thank you for the reassurance about the rib pain. It is a lot easier, but still there if I overdo things or sleep too long on that side. I forget and have to remind myself I'm still in recovery at times :-/ 

    How do you get on with sleeping position? It's taken me a long time to get used to a more upright position, but I can't afford an adjustable bed which would be ideal. Two high pillows is my limit before neck ache becomes an issue, but if I go lower I still get the dreaded reflux. A lot of pillow shuffling most nights...