osophagus cancer diagnosis

Hi,

I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.

Parents
  • Hi Rayb

    just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

    It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

  • do you know what a plo is in an operation? 

    would be grateful if you have any idea

     

    sorry to hear about your diagnosis x

  • Hi andi47, 

    eating , trust me - treats await you....

    As BFG knows, the first delicious ' meal' is usually ' minced chicken & gravy' reformed it think it is called. This is day 2 /3 post op usually .  Coffee/tea comes on day 1/2. Yes I am being a little tongue in cheek (:. He was so happy to get this ' treat' , as it really denoted, job done, eating begins again (:Mine was discharged day 8 post op, which was xmas eve, he had a full xmas dinner all mashed with lashings of gravy, then Boxing Day - guess?? Turkey curry of course- blended (:

    TBH- if all is well, it moves on pretty quickly. as BFG said minced , mashed and moist to start.By week 6 , mine was on pie n mash with lashings of gravy, by 8 or before a full 'curry', steak chips, etc. By the time he started his post op chemo he was back on full 'normal' diet including beer (: Appetite dropped during post op chemo.

    He finished that in March, and once those taste buds had recovered, back to full fat food.

     

    All are 'fed' post op through something called a Jejuneostomy. Small tube that goes into the small bowel, put in during surgery, with delicious feeds.  So hunger is not really a problem. Guess what though, that also ends, after about 6 weeks..

    we never bothered will anything special, just the food I was doing for the household, mashed / chopped with a fork, knife, or blitz in the blended for tougher things like turkey, pigs in blankets etc.

    The things to 'get in' are things you like, several on here have enjoyed trifles, cream, etc, but honestly , anything that takes your fancy, adapted(:

    Stangely, looking back, it seems eons ago, and in the bigger scheme of things is a fraction in time. Not at the time of course (:

    you will be done at some point, once you are out of the 'twilight zone' you'll be on the steak and chips with your blond locks blowing in the wind before you know it.

    Keep the faith - you WILL get there

    Hilts.

     

  • Thank you Hilts - I will look forward to some normality and try not to dwell on the 'in between' stage - as you say - it is only a short time - not sure about the blond locks though xx

  • (:

    Hey, it is very much okay to dwell, cry, shout, scream, give the pillows a thrashing etc. It is a really tough , surreal thing to go through and us humans are prone to pretty spectacular emotions. All part of the tapestry of life (: it is also very much okay to laugh out loud- we did , usually at the most inappropriate things (: and it is defo okay NOT to be okay ((::

    Always ( trying ) to keep the faith

    Hilts

     

  • Hi Andi,

    The previous posts have given you some good pointers. My husband is eating normal food, he came home a bit further down the line from the op but I've been pretty amazed at the variety of food he eats. Smaller portions but before the latest chemo over half a normal portion and our portions tend to be on the larger side lol. Trifle, milkshakes and cream cakes are a good boost. I also put skimmed milk in the whole milk (as advised by dietician) for extra calories. He also had forty sips but to be honest it just depends. He has fruit and veg too and finds tinned fruit easy if he's feeling a bit full.He has also eaten steak pie, fish and chips, roast beef dinner etc. He decided to wait until the end of treatment before trying the alcohol. 

    Dieticians will give you a sheet and are very helpful. Your team will ensure you have all the info you need. 

    Hope you get your fitness test done soon

    Keeping the faith

    Milly

     

  • Thank you Milly - sounds as if your hubby is doing really well - fingers crossed I do as well. The operation and more chemo are a bit daunting - but I just have to focus on 2022

    Andi xx

  • Hi AndI,

    I was very overwhelmed by it all at times and it is daunting. However lots of people have come through it and recently which helps. What happened to my husband was very unusual but they sorted him out. 

    He has one more round of chemo next Friday 17th fingers crossed and then recovery and hopefully some normality after nearly a year. Diagnosed end of last October. 
    Take heart - you will get there. If you can it's good to gain some weight and walk too. If you're eligible for any vaccines it might be worth asking your doc if you can have them before your op. 
     

    keeping the faith

    Milly

     

  • Hi Milly

    Yes I am trying to walk to get a bit stronger - was totally inactive due to chemo but had a broken humerus bone just prior - and spent 6 weeks (and nights) just sitting on my sofa - so very unfit!! Really trying now - having flu jab tomorrow. 
     

    sounds as if your husband has had an exceptionally bad time - so glad his treatment is nearly over 

    Andi x

  • Hi Andi

    Yes he has been through an awful lot, even more than we anticipated but NHS and surgeon have been excellent and the actual operation has been successful. 

    Oh dear re breaking your humerus bone! Glad your able to walk definitely worth the effort. Makes you feel better too getting out in the fresh air. We are all behind you Andi and it sounds like you have a loving family and friends supporting you too. 
    keeping the faith (the mantra from Hilts which I've pinched)

    Milly

  • Hi Andi, I don't know if you will have anyone around to make you meals, but you will no doubt feel quite tired.   So easy things to prepare and eat like tinned condensed cream of chicken soup, cream of tomato soup - the condensed soups are thicker and smaller in bulk.   Also, you can get tinned steak in gravy.   Sorry it may sound hideous, but actually the meat is so soft it's quite nice and you only have to open a tin.   You could have with mashed potato, grated melted cheese.   My husband found anything bready impossible, but maybe you will be ok with that?   He also liked soft boiled eggs with lots of salt and pepper.    
    Well done getting through the pre op chemo, it's so tough, you've done amazingly.   The hair loss is distressing and upsetting.   If it helps at all, my husband who didn't have much on top to start with seemed to have a bit more after chemo was over...and his beard grew back too.   Unfortunately lost it all again on the second lot, but it sounds like from bfg and Hilts it will come back again eventually.

    SallyX

Reply
  • Hi Andi, I don't know if you will have anyone around to make you meals, but you will no doubt feel quite tired.   So easy things to prepare and eat like tinned condensed cream of chicken soup, cream of tomato soup - the condensed soups are thicker and smaller in bulk.   Also, you can get tinned steak in gravy.   Sorry it may sound hideous, but actually the meat is so soft it's quite nice and you only have to open a tin.   You could have with mashed potato, grated melted cheese.   My husband found anything bready impossible, but maybe you will be ok with that?   He also liked soft boiled eggs with lots of salt and pepper.    
    Well done getting through the pre op chemo, it's so tough, you've done amazingly.   The hair loss is distressing and upsetting.   If it helps at all, my husband who didn't have much on top to start with seemed to have a bit more after chemo was over...and his beard grew back too.   Unfortunately lost it all again on the second lot, but it sounds like from bfg and Hilts it will come back again eventually.

    SallyX

Children
  • Thank you Sally - that is a help as I live alone - so will get condensed soup - would not have thought of that!!  Also the tinned steak. I realise I won't be able to drive for a while - so need something in - then I can get deliveries for a while. It's the unknown!!  It sounds as if you are nearly out the other side - must be a relief for you. 
     

    This site is so helpful

    Andu xx