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.

  • Hi Hilts,

    Thanks Hilts,

    yes we feel like friends even though we've never met. Maybe we should get together one day at Sutty! Fingers crossed the cough eases with the suggestions. An OC patient who has been Kev's mentor has developed a cough two years after the operation and is going to have an endoscopy. 
     Yes beer seems to be lol.

    I think I said Kev's  part of the prehab committee as a patient representative - not sure he's recommended beer!

    Condolences on the loss of your mum in law - sounds peaceful and I hope her 'sending off'' goes well.

    keeping the fairh

    Milly
     

  • Hi quiet people !
    All very quiet- must be because we are all moving on, whatever the path. Or 'coming to terms' with our lot- I hate that term, used tongue in cheek as what does it mean- you see the most horrendous things on TV and the reporters say ' they are coming to terms with.......'  how, if your whole house has been blasted to smithereens, how to you 'come to terms' with it. Another meaningless platitude.....

    just checking in really. Sun is shining and all okay here. Mother in laws funeral was lovely, sun shining, whole family out- why is it at funerals that you see people you haven't seen for years! The 2 I've been to recently have actually been very enjoyable! We all wen t for an extended family meal and met up the next day for a sunny walk (: the old dame would have been proud .

    Anyway- all okay here. Usual coughing bob- scan results still not back 3 weeks now, I am hoping that is a good omen.

    Any ways - off to weed the garden.

    Keep keeping the faith

    Hilts

  • Hi Hilts

    Lovely to hear from you   -  and that all is well with you - the sunshine definitely helps. I'm still plodding on - feel a bit cheated as the dreaded 'C' seems to be gone but where I needed a tracheotomy for 8 weeks - it's left me very breathless and limits everything I want to do. Must look on the bright side - I have no pain and not being quite as sick now 

    I'm keeping the faith Hilts - but finding it very hard

    I often think of you all - such a tremendous help xxxx

    Andi xxx

  • Hi all,

    the sun is out and that definately helps, we have had roof down and air in our faces xx We have our first Oncology appt tmrw to hear what joys are to come, Shauns stent has settled down and he isn't in quite so much discomfort, but the joy of watching him eat is pure bliss, last night was a tripe cheeseburger, no bun, soft chips, gravy and coke, I could have cried watching him eat xx We had a Counselling session yesterday at MacMillan which was great and today we need to try and get our heads round the benefits side, Shaun was self employed overseas and obviously now can't go back, we have never claimed anything so getting your head round it is a little strange but that's our mission for today, then wedding ready for Gretna Green next wknd, our running away seems to have attracted 12 friends so far lol xx

    love and smiles to all xxxx Sam and Shaun xx

     

  • Hi Y'all.

    Yay- Manfy- you came over ( big clapping emoji's). Welcome to the oesophageal cancer club! The club nobody wants to be in, but here we all are.

    Glad the stent has gone in okay. Then you go and get TRIPE, wow that's a blast from the past !! I remember the smell as a kid with my grandad cooking the stuff in milk ( feeling sick emoji) smoking his woodbine ina string vest (:. Mind you it is slippery! )Beer is also slippery- most of the chaps on here seem to find it VERY effective! 5 pints in a sitting is the norm! To work toward post treatment.Although, mine went out NYE and dropped 8 ! He was happy I was NOT!

    I so get you feeling so over the moon when food is swallowed for the first time in eons without hawking it back- such a good vibe (:

    AND- roof down- the men buy a sports car AFTER they have completed, but nice one getting one before.

    As for seeing oncologist tomorrow- as I've said, those cells will get a right slapping over the next few weeks- not sure he'll be fancing  tripe though! Just told my husband about that and he turned slightly pale and said he might (just about) eat that than sip those rancid supplements! (:

    As for claiming anything- have the lot, you have worked hard and now need a little help, we didn't claim as he was on full sick pay, but there is a few things about to help. Mine has now decided to retire. He went back to work last May (Wally) will finish, Probably in July. After the last 2 years it kinda gives you a different perspective on life (:

    Andi - good to hear from you- the shortness of breath goes with the turf. Probably nothing to do with the trachy, as that has sealed over and well healed by now, more like the slapping your lungs took post op. Will take a while for them to get used to being reinflated , I would ask your team if you can see a physio for chest expansion exercises or if you can use that 'lung expander' thingy that was given out post op. Mine felt short of breath etc for about 3-4 months post op then the more stuff he did to fully expand his chest the better it got . He is no longer short of breath, probably reasonably back to normal after about 6/7 months.

    Good day for us today- scan results back- no little f*****ers seen yay! Although hernia visable again- we'll take that I think. I think they don't like to over tighten it as that causes it's own set of problems, so maybe more surgery who knows and right at this moment who cares! Disease free! Also a year exactly since last chemo ! 
    Hope everyone else is keeping the faith

    Hilts.

     

  • Hi Hilts

    i'm waiting for appointment for lung exercises - can't use the expander contraption as have damaged trachea!!  Definitely getting better though and staying very positive, the lovely sunshine helps. 
     

    Glad your results are good - always a bonus. I had to sell my soft top car as needed an automatic - arm (broke it last year) wasn't strong enough to get reverse!!  Still have roof that opens - but really miss my soft top 

     

    keep getting stronger 

     

    Andi xx

  • We are both crying with laughter, i as per usual type and send without checking, I was thinking Tripe?? Re read my post and see that I didn't finish the word!! Triple cheeseburger as in McDonald's lol, that has really made my day, I'm such a twxt sometimes xx

  • LOL, now you've got me laughing my face off (: (: 

    That is a huge improvement!! Tripe v triple cheeseburger , no contest. I am a Burger King gal, but when you've not been able to swallow anything and taste nothing but metal a cheeseburger does the trick.

    Get chucking any weight on now, eat anything and everything. Chemo is the dogs nads for doing what it does, but boy does it make you feel sick- so go and have a 'daily Mac.

    Keep smiling and the faith 

    hilts

     

  • Hi again everyone, sorry I've been silewnt for a while but one way or another, we've been very busy, too and from hospital etc.

    A lot has happened in the meantime and I would change my userename from Distraught to cautiously optimistic if I knew how!!

    Bottom line is hubby had FLOT cycles which were very successful and side effects he coped well with were quite limited until the 4th, which knocked him sideways.  Neveertheless, the end result was brilliant in as much as he was eating normally after cycle 2, gaining weight massively and the laparoscopy following cycle 4 showed no cancer cells, even micro cells, as a result of which he had the BIG OP last Thursday  -  he's currently on Critical Care, having had wonderful care from the NHS which cannot be faulted.

    Slight problem in as much as he's developed a clot on one lung, hence a longer CCU stay than was anticipated, but the surgery went as planned and he's recovering well other than the clot on the lung, which is beinbg treated and improving as I write this.

    I am so thankful to the NHS.  It is very easy to complain and find fault but few mention when they have had good service and boy, has he had good service.  The people dealing with my OH have been brillliant, devoted, clever and dedicated to their jobs  I don't think he would have had better treatment had he paid for private care.

    When I first posted on here I truly felt as if my world had fallen apart.  That was last November and I wsould never have believed what has happened since was possible.

    Onwards now.  Probably another 14 days in hospital, recovery at home and another 4 cycles of chemo to give him the best shot of long term recovery. 

    Thanks to all of you on here who lifted my spirits along the journey so far and provided me with all the helpful info I needed.  The biggest thank you goes to our wonderful NHS.  .  

  • Hi Distraught

    So good to hear that your hubbie's treatment is doing so well. I can only agree wholeheartedly about our truly wonderful NHS - I had 8 weeks on ICU - on a tracheotomy - OK not what I had expected, but the care was second to none.  The nurses, doctors, cleaners - all so dedicated. NO amount of money could have bought me better treatment. They are just wonderful and we are so lucky to have the NHS.

    Hope everything goes well and your hubby is soon home with you again 

    Andi xx