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

  • Glad to hear you're pain free at least. How annoying about the lung though! Have they given you any timescales on how long you could be in ICU for? Xx

  • Hi Andi,

    I've been thinking of you so it's good to hear that you've had the op. Everyone is different but I'm sure they will sort you out. My husband had a longer stay in ICU as you know and had lung problems after his second op but he's doing well now. ICU  staff are highly trained.

    Keeping  the faith

    Milly

  • Oooo whoop whoop Andi yaaaay 

    Huge bunch of hand clapping emojis .

    You're DONE.

    congrats.

    Yep, post op is 'interesting' . Opiates help an awful lot (:. Lung will reinflate- the hospital will give them no choice (: Honestly, though the care is soooooo darn good, any blips will soon be put in their place.

    So - 2 days post op?  They'll have you up soon (:, then sips of water etc. Small steps every day (:

    Husband was there on ICU for 2 days I think. Chucked out on day 8 ish.

    I bet you can't belive you're all done, slept through the lot(:

    Take care and keep posting

    keep the faith

    Hilts.

  • Well done Andi!   Thanks for letting us know!   Hope everything carries on getting better, and your lung starts behaving itself soon.   You are in the best place for the best care.   Thinking of you

    SallyX

  • Hi Andi

    Welcome back. My lung was a bit on the slow side to inflate - and that cough should start to sort itself out when you are up and around on your feet (although I did feel like the weight of the world on my shoulders at the time).  The one perk for me shuffling around on my feet was that I didn't bang my head when I walked through a door.  Minor story - on a contract a few years ago at SSE during my welcome meeting, there was a consultation at the time when it came to health and safety whether I should wear a hard hat when I was in the office.  I managed to persuade them that I was used to ducking.

    Hope you are having a better day - it will be "baby steps".  :-)

    cheers

    bfg

  • Really bad day - took epidural out - had been in a lot of discomfort over night which changed to pain in n the morning. Sorted now. 2 drains out as well - one to go!!  Think I'll be in ICU for just over a week - 7 th day tomorrow. Recovery now. My gorgeous granddaughter gave birth to my first great granddaughter today - Emmie 6 lbs - can't wait for a cuddle.  

    thank you all for all your thoughts and help. 
     

    Andi xx

  • Congratulations Andi! A great Grandmother! It won't be long before cuddles are in abundance.  :-)

    Great news on the drains as well. It was a huge relief getting them out. 

    Keep clicking the button!

    Cheers

    Bfg 

  • Hi Andi,

    Congratulations on the birth of your great granddaughter! Sorry you've had a bad day but pleased to hear that your pain has been sorted AND you've had two drains out! Progress. As everyone says small steps but steps forward.

    Have you been allowed any visitors? Not sure what the policy is now.

    keep going and keeping the faith,

    Milly

     

  • Sadly no visitors yet - still on ICU.  Xxxo

  • LOL Andi 47, 

    You said you had 'discomfort ' overnight , the epidural was removed and now the pain is under control- you sound like you were giving birth (: LOL. You must have been having 'sympathy pains' for her .  Nice new baby for you to look forward to spoiling (: 

    The whole visiting thing is quite weird and very regional. I was allowed into ICU for the first 3 days, then completely banned from the whole premises, even when I picked him up, I had to wait outside. Then the chemo unit, where everyone is immunosuppressed, I was allowed in ‍♀️.  Mind you getting into any hospital is easier than getting in to see GP's!!!- they are a total law unto themselves grrr

    Any grub or fluids yet?.

    keep plodding and posting

    keep the faith

    Hilts.

Reply
  • LOL Andi 47, 

    You said you had 'discomfort ' overnight , the epidural was removed and now the pain is under control- you sound like you were giving birth (: LOL. You must have been having 'sympathy pains' for her .  Nice new baby for you to look forward to spoiling (: 

    The whole visiting thing is quite weird and very regional. I was allowed into ICU for the first 3 days, then completely banned from the whole premises, even when I picked him up, I had to wait outside. Then the chemo unit, where everyone is immunosuppressed, I was allowed in ‍♀️.  Mind you getting into any hospital is easier than getting in to see GP's!!!- they are a total law unto themselves grrr

    Any grub or fluids yet?.

    keep plodding and posting

    keep the faith

    Hilts.

Children
  • Hi All,

    Yes I agree Hilts it is very regional. VIsiting was in exceptional circumstances when Kev was in and I was only allowed in the first session of pre and post op chemo.

    I hope you've had a better day Andi and are continuing to make those small steps towards recovery. It will get better.
    A lovely goal to see your new addition to the family. 

    Hope everyone  is doing OK. Kev has an appointment with the surgeon tomorrow and an oncology one at the end of the month. We are going to the Lakd District on Friday for a week with our family. Booked a lovely house so fingers crossed! Planned a champagne breakfast to celebrate end of treatment. Find it hard to comprehend it's been a year since this all began.

    Still keeping the faith for everyone 

    Milly

     



     

     

     

  • Hi Millie, 

    You have a blooming marvellous time x Enjoy.

    Good vibes for the oncologist etc. So weird now that the appointments are monthly max!  and not even that for us now. CT scan on 13th for this wretched coughing, but I think I 'diagnosed' it finally last night. The reason he doesn't cough after 3/4 pints is because all that fluid is washing the pipe work through, so nothing remains to irritate his airways. Last night has beans on toast! Can you imagine anything more claggy! No flush through= coughing +++ . Tonight fish, no claggy stuff and a pint of squash- we'll see!

    As far the last year- where to start with the processing!! How does a mere human even begin to. We are in that stage now. We ran around all summer, holidays, new cars etc, now we are quiet , the overthinking is in full flow. As I've said before completely expected, but still not nice. We still sit here thinking WTF (:

    Anyhows- have a great time and always keeping the faith

    Hilts 

  • Yes Hilts,

    It is a lot to process. The clinical pyschologist has suggested we treat the next few months as a 'convalescent' period to regain physical and mental stability gradually introducing more normal routines but Kev resting as needed. He has been through such a lot as you all know 3 major ops in 8 weeks and then the post op FLOT 5 weeks after his last op on his left lung. 
    Did you find your appointment at Maggie's helpful? 

    I hope the CT scan is helpful and I think you could be right about the 'clogging'. My husband has always had a drink with his meals and has continued to be able to do this albeit smaller amounts. He has had a few cramps after eating and a few 'dumping' episodes but generally his eating is much better than he or I imagined

    Thanks for your good wishes soo looking forward to a change of scenery and a bit of 'normality'. I had a facial today - first one in over a year - wonderful!

    Keeping the faith

    Milly

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  • hi Hilts 

    just a bit on the irritating cough situation which everyome seems to suffer from just over the recent two months mine has improved and almost vanished since i started rinsing out my synuses regularly and the coughing up of mucous situation has reduced by a lot just another step forward i hope , the saline rinse kit i use is the one most popular one from the chemists any way onwards and upwards , still no news from Rayb , i finished my course of relexology and the jury is out on that one from me , hope you are both well and take care

    Regards

    Douglas

  • Hi all,

    The appointment with the surgeon went well. He was very happy to see Kev and how much progress he has made. He said Kev had seen the very best and worst and everything inbetween! He looked at all his scars and battle wounds and was pleased with how they have healed. I must admit Kev is good at putting E45 on them all! He was pleased with him hitting the top of the spirometre and all the work he's done exercising both before and after the op. He has asked him if he would help with other patients preparing for the op but told him not to take his top off lol. 

    So off to the Lakes on Friday and then scan on 20th followed by meeting with Consultant Oncologist a week later. Hopefully that will be good news too. 
     

    Douglas interesting re reflexology and also info on Sinus rinse. 
     

    Andi I hope you are continuing to make  progress.

    keeping the faith

    Milly

     

  • Hi Milly,

    That's really good news to hear...time for a well earned break,  enjoy it.

    Lee

  • Thanks Lee! I hope your dad is doing OK.

    keeping the faith 

    Milly

  • Hi Milly that's great news to hear!   Enjoy your holiday in the lakes, it sounds a lovely idea, you must be looking forward to it so much!  SallyX

  • Hi Hilts, good to hear from you, your reasoning about the food types and fluid intake types sounds good. Yes baked beans on toast definitely sounds claggy to me.   It sounds amazing the amount of food your husband can eat now tho, he is doing really well isn't he!   Good luck with the scan on 13th, SallyX

  • Hi Sally tanks for your good wishes and we are certainly looking forward to it. I Hope your husband is feeling a bit better. Have you had a follow up yet or a plan on following up? 
    keeping the faith as always

    Milly