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.

  • Ah, Andi,

    Yes, It was amazing, but my legs are not very happy at all!

    We are not far from Windsor, up the road, place with a few colleges, we went in August as I had not been since 1977 and just fancied it (: we sat is St. George's chapel, just above the vault (: 

    The glucose tablets- yep, suggestion from one of the local fellow travellers. They are the ones diabetics use, even though a diabetic friend of mine just uses fruit pastels when feeling a tad wobbly. We get them from a well known supermarket beginning with S . Or huge boxes from a on line large retailer beginning with A(: they are called dextroenergy and come in loads of flavours, sweets essentially, but melt rapidly. Hubs uses them, but then has to follow up with a carb rich snack- as diabetics do.

    There are loads on the market, but these are dirt cheap and very effective- always on the bottom shelves , with the more expensive (same thing) more in the eye line

    Keep that faith y'all

    Hilts

  • Hi Steve, 

    don't know if I have responded, sorry if not.

    welcome to the club no one wants to be in! (:

    Calories - quite literally anything she can get down. Not a time to be 'health conscious'- not that we ever were (:. When Husband was first diagnosed, he shovelled melted cheese in to everything , lashings of olive oil, butter, cream etc, so soup with what I've mentioned, milk shakes made with cream. The standard supliments are pretty rank, so go with what she likes, with your own additions.

    I have to say, going in for an oesophagectomy within a month of diagnosis is not 'usual', but do come back if you like with a fuller picture. There are quite a few of us on here who are 'well experienced' in the whole thing.

    hilts

     

  • Hi Steve,

    Sorry somehow I missed your post - as Hilts said a month is quick for the operation. My husband was diagnosed end October 2020 - Oesophagectomy on 4th May 2021. Lots of tests first then chemo started end of January 2021. Of course everyone is different and there are some differences in waiting time between health authorities. Presumably she has been assigned an upper GI keyworjer? It might be worth contacting them? 
     

    Re calories as Hilts says what she fancies/can eat. Add skimmed powdered milk to whole milk is a good way to up calories. Milk shakes with ice cream in and custard, trifle but also my husband had fruit and veg (this could be in a smoothie if she is struggling to swallow. Butter added to mash potatoes or scrambled eggs. Flaky fish with a sauce. The dietitian should be able to help advise too. I hope this helps a bit.

    keeping the faith

    Milly

     


     

     

  • Thank you Hilts - will give them a try xx. Andi xx

  • Hello y'all,

    just checking in- nothing really to report, want or need(:

    All  of us just had another dose of covid- it really was 'just a cold' this time- never been 'into' testing, but had a few left over in the drawer, so out of curiosity n'all and bingo. So now have 'topped up' hybrid immunity - every cloud n all.

    Anyway- what is OC world. Hubs had his barium swallow on Wednesday ( on going inv into cough and aspiration) seemed okay- never mind the medics I diagnosed him months ago-  suffers from 'gut stuffing'- so rams full up what is left of gut and bubbles over- I no longer 'nag' (:, all quiet on the hiatus hernia fixing again- he is umming and rrr'ing whether to bother fixing.

    All very quiet indeed- hope y'all are plodding on

    keeping the faith

    Hilts

  • Hi Hilts

    Good to hear from you and glad everything is going along well. I'm the same really - still waiting for scan results (no news .......) and hoping hernia will behave. Otherwise all OK.  

    Two lovely surprises next week - my daughters are taking me away for a mystery couple of nights  - home for one night and a friend is taking me away for a mystery 3 nights - as I was in hospital for my birthday last year and this year is three quarters of an century ( how did that happen) - I am being thoroughly spoilt - can't wait - bring it on

    keeping the faith 

    Andi xx

  • Hi all,

    Good to hear about your treats Andi - how wonderful! Hope you get your scan results soon. 
    Pleased that your husband is doing well overall Hilts and I hope his cough and aspiration gets sorted. He might start listening to you! 

    We are doing well, fingers crossed, just getting out and about in this lovely weather. I think you will understand when I say it's so nice to see him doing 'normal' things like cutting the shrubs with the hedge trimmer lol. Dumping happening less, again fingers crossed. Routine appointment with oncologist on 23rd November so hoping that's a non event and we can carry on as we are doing. 

    Probably similar to you guys we still feel thankful to the NHS staff.

    still keeping the faith for everyone 

    Milly


     

     

  • Hi Hilts, Andi and all,

    Firstly, I hope you  are all chugging along. I've debated about posting on here for a couple of days almost like writing it will make it real and happen. Illogical but you guys will 'get it'. My husband is doing really well overall, still the occasional dumping  but not for so long and around every 3 -4 weeks plus he can usually work out a reason re what he has eaten. So when the bowel screening kit arrived, he had his last one just before he was diagnosed 2 years ago (which was no action needed)  we weren't concerned. He set off his sample and we didn't really think anything until the letter arrived to say that he needs further investigation. Well you can imagine how he/we felt/still feel - very worried. 

    The screening date was for next week at another local hospital - different to where he was treated for the Oesophageal cancer. So he rang to explain about his surgery and to ask to go to the hospital that treated him. To cut it short they weren't sure if he would be able to have the colonoscopy so asked him to contact his surgeon who was very quick in replying saying yes. He has now moved back to the original hospital but we need to wait a bit longer 22nd November to be assessed. We are trying really hard to not overthink it but it's difficult. We don't feel able to tell our family as we don't want them to worry and hopefully it's unnecessary worry - fingers and everything crossed! He doesn't have any other symptoms and the blood isn't obvious to the naked eye. We are away next week on a Turkey and Tinsel weekend with a group trip (ex Rolls-Royce) so hoping this takes our mind off it. 

    Has anyone on here had a colonoscopy post op? 

    Anyway thanks for reading this - it just helps to tell someone who understands

    Keeping the faith for everyone,

    Milly

  • Howdee Millie ny'all, 

    OF COURSE you can post here- we all know what it is like and know each other's stories.

    Oh bless you - I bet you are beside yourselves! BUT if it is any use, I think we all would. After all we've all been through, we all think " expect the worst, hope for better"  I'm not sure that mindset will ever change! For any of us (:-

    As for not telling the family- I agree. Although my lot always meant well it just added to the stress. 
    As for what is going on 'down there'- like you said could be something and nothing, BUT I know I know(:-

    just remember though - he dealt with one beast etc, and he did have a PILE of chemo .

    So gal- cheering all the way for you and keep us up to speed (:-

    Rmember KEEP THAT FAITH XX

    Hilts

  • Thanks Hilts, I knew  you guys would understand. We don't have much family and I know they will worry. Really hoping it's not anything sinister. I keep telling myself it's a screening test to help prevent anything becoming sinister! And if he wasn't of an age to have screening he wouldn't even have had the test but still a worry. Feel like you are back in the 'waiting room'. So everything crossed. He does have his 'check up' appointment with oncologist on 23rd November so that's reassuring. The surgeon was excellent at replying back by e mail the same day we asked the question re Colonoscopy too. 

    Just watching Footie Derby v Torquay in the cup - man sent off and a penalty to Torquay! 

    Has your hubby decided on op for Hernia? 
     

    Still keeping the faith

    Milly