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.

  • Hey y'all, 

    Cautiously optimistic ( formally known as distraught' - lol)- so glad for you, 3/4 of the way through now yaaaayyy.

    ICU is the route for all, most  collect a few 'extra's' on the way. Considering the massivenesses?? ( queen's English?) of the op to be expected I guess.

    Really good news about those cells, had a right good slapping and murdered in their masses ( big clapping emoji) . The chemo is the business, but by the 4 th the ole' bod is thinking enough! It does its job very well, but side effects are pretty cumalitive.

    They will soon have him up and eating the 'delicious' minced and moist- what a treat.........not(: home before you know it.

    I absolutely agree with you about the nhs, people dis it all the time, particularly our revolting media and revolting politicians stirring the pot trying to make themselves more 'popular' The talent, care and dedication is incredible . When we were about to go through surgery I had a little bee in my bonnet that had to be chased - about what the whole thing would have cost If it wasn't for the nhs- worked out about £800,000!!!!!!- no wonder the survival stats are bad in countries where they have to pay for it!, simple . If you can't afford it , well, put bluntly , die ):. We literally don't know we are born.

    Anyhows , of to sit in sun

    Keep keeping that faith

    Hilts x

  • Hi again everybody

    Firstly I must learn how to rid myself of the Distraught title and will be asking my youngest for help on that score.

    Good news is hubby is recovering very well.  All the medics are pleased with his progress, the clot in the lung hs been "busted" with the relevant drugs, he is now tube and wireless, apart from the feeding line into the stomach,and has been drinking sips of water for the last 3 days.  All the tests show he is, so far, leak free and so today he started on the sloppy food diet.  He's so looking forward to jelly and ice cream!

    There is talk of sending him home earlier than anticipated, maybe this Saturday.  Is this normal?  How long was everyone else in hospital?  Is help available via the District Nurses etc. with changing dressings and follow up stuff?  

    I am assuming he will have to  have the follow up 4 FLOT cycles.  If so, when is that likely to start?  Is is automatic that this is offered and if it's a matter of choice, what would your advfice be?   

    Signing off as Cautiously Optimistic.  OMG just noticed it's snowing

  • Hi Cautiously Optimistic !

    Good to hear your Hubby is doing well and moving nicely out the other side of the op, well done !

    My surgeon didn't allow anything by mouth for 5 days post op and I just remember dreaming about glasses of ice cold cola in my sleep as I'd had enough of sucking on wet sponges on sticks to quench my thirst !

    When day 6 rolled around and I was allowed ice cream I remember being on FaceTime to my Wife as it arrived and breaking down in tears on the phone to her as it tasted so amazing to finally be able to eat something, after so long - it was amazing yet something I'd taken for granted all my life. Those 5 days post op made me think and appreciate a lot of things !

    I was in hospital just shy of 10 days I think, and remember that they wouldn't discharge me until I'd had a bowl movement - and I was desperate to get home to see my Wife and kids (it was mid 2021 and covid restrictions meant no visitors @ hospital) and being clogged up from all the pain killers was preventing me getting home any quicker haha !

    My Wife changed all my dressing and they were pretty gruesome to start with - she was a trooper as I looked like an extra from the beach landing scene at the start of Saving Private Ryan to start with ... and remember her calling the MacMillan Helpline a few times as the dressings were so bad - but she trooped on through and here we are 7+ months later with a beautifully healed scar !

    I had the follow up FLOT and it was about 4-6 weeks post surgery and was the absolute, without doubt the hardest thing I have ever been through in my entire life. It made the pre op stuff and the op itself seem like a walk in the park. It absolutely kicked my derriere with nausea, vomiting, feeling toxic in my own skin ... it felt like I had been part of the Salisbury, novichok Russian poisoning.

    I remember saying to my Wife after the first post op cycle, I don't know how I can do another 3 of these. But through her support and encouragement and all the people in this thread too, I limped on through and made it out the other side thankfully !

    My advice would be, it's blooming tough so manage your expectations and support your hubby through it if he chooses to do it, but id take whatever they offer to minimise any chances of having to go through it all again.

    Encourage him that life can be good again the other side of it all. Last Saturday night my Wife and I went on our first date night, no kids for in as long as I can remember. Lovely restaurant and I managed to eat a filet steak, chips with peppercorn sauce and a cream filled meringue with fruit coulis for dessert and two mojitos ! Not bad for someone that's had a total gastrectomy.

    Yah, crazy here in Surrey too ... snow this morning and now blue skies and sunshine this arvo !

    Hilts, I had a scan yesterday morning too and saw my surgeon in the afternoon and happy to hear that no dodgy cells present currently either !

    Endoscopy in a few weeks time so he can check out his handiwork by the sounds of it too.

    Thanks everyone for the encouragement here and support, hope you're all OK and trucking on thru our respective journeys.

  • Ello Cautiously optimistic and y 'all,

    Yep, got caught in a right 'blizzard' this afternoon!! They weird thing being I was looking at the forecast for Florida- where we are finally off to next week- 80deg V 32 deg. 
     In terms of your husband coming home and dressing etc. mine was chucked out day 8 or 9 BUT it was Xmas eve and he had it all by keyhole, so he had no dressings either, just 4 bullet hole wounds., which were 'glued' not stitched and were all nice and dry.He had a very small dressing over his abdominal feeding tube.  His chest drain hole had a tiny piece of gauze over it. But by day 4 it had scabbed nicely, so I took it off, It really does depend on what the wounds look like, they may not need dressing at all, especially I'd they are 'nice and crusty' . If he does have any dressing, they will be very simple, just pull the old off and stick on new, bathing wounds etc stopped donkeys years ago. I am an ex nurse ( left wards 1990 ish) and we were moving then to leaving wounds alone, not dressing them every day unless there was good reason and never bathing them, theory being less fiddling, sooner mended. Unlikely to need district nurses as unlikely to be anything complicated if at all. If I think back to my c section wound, I had no dressing at all after about 3 days.

    As for the post op chemo, as Redski says about 6 ish weeks. and yes, husband found it all pretty grim, as all the effects are cumulative, so the body really is well miffed by this point, BUT most on here have muddled through the glue and come out the other side and worth that extra 'pain' for the gain. Just think though 8 weeks and that's it, done, finito. Rollercoaster car back at base .

    You will certainly get there and no doubt will sit down, look at each other and think WTF just happened! If it's any consolation we still are doing that!
    keep keeping that faith

    Hilts 

     

  • Hello everyone,

    Sorry but this isn't an exact response but not long out of hospital after surgery. Added complications with lungs collapsing and constantly wretching and coughing up phlegm every day, episodes last from 30 minutes to 2 hours last night. I've only

    managed one meal in nearly 3 days and just can't stomach anything. Did or has this happened to anyone else? Does it take long to get better?

     

    the added issue of low SATs and inability to walk for, finding things tough and may have lost my GF over this as I have some bad days. 
     

    Just didn't know where else to turn too,

     

    It's given me some strength to see those who have been through similar.

     

    Brotherhood

  • Hi Brotherhood

    Ibhad the same - and honestly - one day you go to bed and suddenly realise 'I haven't coughed or been sick today'. It may come back occasionally but it gets less frequent

    Keep with it 

    Andi xx

  • Hi

    just wondering if anyone has any experience of a persistent cough post surgery.

    my Husband is now 8 weeks post surgery. Doing well really, but has developed 3 weeks ago a persistent cough, very annoying.

    anyone else had this?

    tracy

  • Glad to hear you're doing OK Andi !

  • Hi Tracy, [@Hilts]‍ is our resident expert on this !

    Her Hubby had a mystery persistent cough post surgery and investigations etc to get it sorted so I've no doubt she will have bags of advice and knowledge on it to share with you !

  • Thank you Redski - it a long and slow process - but getting there. Hope you are OK x