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

  • This is where I absolutely struggle too, Hilts - same as your guy ; and I need to learn ... eat smaller and slower. I still have the same appetite I had pre op and find it very hard looking at a plate of food and not want to vaporise the lot. So much so, after I got my surgical staples out last Thursday in London, I found myself in Nando's sat infront of a plate of a quarter chicken and chips - perhaps a bit too bold !

    I ate half and doggy boxed the rest for later and was OK ... but I do find if I eat too much or too quickly I get a bout of the hiccups that are very annoying whilst my body is trying to process it all, like you say with your guy but his is a cough.

    Just have to be patient, remind myself what we've been thru and take it slowly when eating and being sensible with portion sizing - which is where the kids COOK meals really come in handy as the portion sizing is easy and my wife refuses to let me eat more than half of one without 30+ mins in between sitting 1 & 2 ... and in fairness when she does that I don't have any issues (and I'm not sure she'll let me go rogue in LDN again solo, haha !)

    Last tip (for just after op) I found useful is my surgeon got me onto chewable vitamins too, to help make sure levels are maintained ... and I know and appreciate opinion here is divided on them, but for context I like them because they taste like sweets and worst case - they can't do any harm so I'd rather errrr on the side of caution and take them !

    www.boots.com/bassetts-multivitamins-raspberry-and-pomegranate-flavour-soft-and-chewies-adult-30-10204168

     

     

  • Hi Redski

    thank you so much - loads of tips and ideas of food to get in. That was really kind of you - this is all so helpful when everything is so scary and unknown 

    Kerp eating 

    Andi xx

  • Hi Milly

    That's a great idea as my freezer containers are quite large - thank you xx

  • Try not to worry or be scared Andi.

    Like someone said to me, you won't know anything about it and will wake up, out the other side and can just focus on rest and recuperation.

    I went down to theatre walking with and talking to the anesthetist and he put a cannula on my hand, said he'd give me 'a little bit of champagne on board' (his colloquialism for some initial anaesthetic) to relax me ... well that was all OK and was the last thing I remember talking to him as he said that ... next thing I knew, I woke up in CCU with my surgeon talking to me about how it'd all gone.

    Youll be great, stay positive and keep walking forwards you're doing well.

  • How is everyone getting on ?

    Hope everyone is keeping on trucking forwards on their respective paths.

  • Hi Redski, thank you for asking.   Husband has just had his fourth and final round of post op chemo on Monday.   We were both incredibly relieved he managed to limp past the finishing line.   However he is pretty wiped out now with fatigue and chemo-ness.   Hopefully in a week or so he will start to pick up a bit, and then back to trying to eat proper food again.    I hope you are doing ok, and as you say, I also hope everyone is trucking along their paths.

    Sally x

  • Hi y'all.

    Hope everyone is good.

    9 months today since the slice and dice was done (:

    Y'all know mine has been coughing since birth, opps I meant op, must have been the 9 months LOL- and it is driving us both to distraction!! Well, rang our unit again to say arrgggg. She said ' oh I'll let the surgeon know" surgeon comes back- " well let's do CT Scan" To see what the trouble is !!!!! You can imagine what I'm thinking !! Last time we had those sort of words it went like " oh, we'll  just do an endoscopy to check everything is normal" . I am bricking it, I did ask them "are you looking for mets! , " not really they say, we are looking at the whole picture - arrrrgggg. Trigger or what.

    On top of that we have now visited our local maggies. What an amazing outfit they are, defo be one of my charities for the future I think. We'll he went today and I go Monday. They have offered loads of 'psychological' stuff, but we got a fascinating article written by one ( can' remember name and to lazy to get of my butt and look). Harvey maybe?? Describing EXACTLY what is going on in our heads at the mo. So uncanny, I wonder if he has been in my head! Very much about the auto pilot, then wham, the massiveness ( queens English?) of the whole thing starts to hit home. At least I take heart from knowing for the first time in my life I am completely normal!! Still don't feel good though ):

    Sally- yay- all done , finito. Yep, the hero in him will start creeping back little by little over the next few days, then weeks and before you know it, some type of normality- yay

    Anyways

    Onwards and keeping the faith

    Hilts

  • Hi Hilts,   I hope the CT scan is ok, I can imagine how you are feeling, when is it?   I think my husband will be having a scan as well, different people say different things, so not sure, but I think it will be before the Oncologist call next month if he does have a scan.   It would be good wouldn't it if they could just see what might be causing the cough, it is a very difficult thing to live with, especially with people so wary of COVID coughing carriers.   Let alone the irritation of it.   And it is irritating for all parties.  We actually went to see a play a week ago, how exciting.   For some reason I started getting a tickle in my throat and was frantically trying to suppress a choking fit in the very quiet audience.  It was horrible and could have ruined our first night out for years!   It's not even me who is ill so what's that all about.

    interesting you dropped into Maggies.   At his last chemo session I walked by the Maggie's centre near the hospital, I stood a while, but couldn't go in, I felt I would just start crying and not be able to say anything.   Or what even to say.   So I just ended up walking around the grounds.   I hope your session there helps you and brings you some comfort.

    keeping the faith,

    sallyX

  • Hi all,

    My husband had his last FLOT today - hurray! Quickest one too finished at 14:10 although still has 5FU to go through til tomorrow. Sally - my husband asked about a CT scan and was advised it should be in 6 weeks and then 8 weeks until he seeing Oncology consultant. He has appointment with the surgeon on 6th October.  I hope your husband is beginning to feel a little better day by day. 
     

    Hilts - yes I understand you must feel anxious and I agree with what Sally said about it being irritating. It seems a simple thing but when it's constant it must be difficult. Hopefully the scan will enable them to resolve the problem. Re the wedge for the bed lol - yes longest river in the world I believe by volume lol Pleased that Maggies were helpful and the article is by Dr Peter Harvey and the Clinicol Physcologist gave it Kev - very helpful and interesting . I definitely appreciate an explanation rather than a professional just listening although that in itself can be helpful too. 

    I did think of something that might be help - Pomegranate juice or pomegranates are good for the platelet count. 

    I hope everyone is going along OK on this difficult path. I appreciate everyone's situation is unique but I really do wish you all healing thoughts for body and mind.

    keeping the faith

    Milly

     

Reply
  • Hi all,

    My husband had his last FLOT today - hurray! Quickest one too finished at 14:10 although still has 5FU to go through til tomorrow. Sally - my husband asked about a CT scan and was advised it should be in 6 weeks and then 8 weeks until he seeing Oncology consultant. He has appointment with the surgeon on 6th October.  I hope your husband is beginning to feel a little better day by day. 
     

    Hilts - yes I understand you must feel anxious and I agree with what Sally said about it being irritating. It seems a simple thing but when it's constant it must be difficult. Hopefully the scan will enable them to resolve the problem. Re the wedge for the bed lol - yes longest river in the world I believe by volume lol Pleased that Maggies were helpful and the article is by Dr Peter Harvey and the Clinicol Physcologist gave it Kev - very helpful and interesting . I definitely appreciate an explanation rather than a professional just listening although that in itself can be helpful too. 

    I did think of something that might be help - Pomegranate juice or pomegranates are good for the platelet count. 

    I hope everyone is going along OK on this difficult path. I appreciate everyone's situation is unique but I really do wish you all healing thoughts for body and mind.

    keeping the faith

    Milly

     

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