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.

  • Hello everyone.

     

    This thread is turning into a huge fountain of experience/advice for everyone, as I have said before its great to be able to share feelings/worries and just be able to see you’re not the only one on this OC boat of ours it`s a bumpy rollercoaster ride for most but this place has been a great help.

     

    I have been missing in action since the end of July, just trying to get on an even keel and move on with our family life.

     

    A lot has happened since I last posted, we have half dismantled and rebuilt our conservatory to install a hot tub, bit of a mission to say the least, but as ive been told we bloody deserve it lol.

     

    Regarding my heath I have been managing to eat my normal diet but in smaller amounts, but I can tell when my NEW stomach tells me I have reached my limit. Only one thing worrying me since my treatment around a month post op was a pain in my right upper rib cage and after a recent CT scan I have Gallstones lovely...NOT! Surgery may not happen because of the surgery already performed, could be too dangerous. Will update you all in the New Year when I have my next check up.

     

    After 6 months of recouperating at home I decided it was time to go back to work, although on light duties. Time to get on with life or so I thought, only to be hit with another huge blow this time it was my rock, the wife. She has been diagnosed with breast cancer, caught early thank god and has just undergone a lumpectomy hopefully they have it all and no future operations needed. So still dealing with the big C.

     

    Hopefully more people will come across this site and join the OC ride with us.

     

    Keeping it real.

    Ray

  • Offline in reply to RayB

    Hi Ray

    Great to hear from you again, the RayB forum has missed you.

    I know that you and I were fairly close timing wise on our respective ops and follow up flot cycles, but my wife had a lumpectomy for a breast tumour too a couple of weeks ago. She has been told that should be it and they don't want to see her for another year.  But how spooky is that?

    I have no gallstones though :-), but do share the diet routine and  am acutely aware of what happens if you don't listen to your new stomach. 

    You will love the new hottub , it's proven to be very therapeutic.

    Oh - and we finally told my family that we finally got hitched over a year ago.

    Keeping the faith real!

    Cheers

    Bfg

  • Hi Ray!

    So good to hear from you as we've all missed you! Good the hear that you are generally doing well and I hope your gallstones settle down and they can sort you. Sorry to hear about your wife, good job it's been caught early. It's just not right!! What a coincidence with Bfg.  You are all so strong. 
    As you will know from the thread my husbands Rollercoaster got even more twisting but he recently had the good news that CT scan was clear and everything seems as good as it can be so everything crossed.

    I understand why you needed to 'get some normality back' but thank you so much for posting as we've all been concerned for you and missed you. 

    keeping the faith despite some serious reality

    Milly 

     

     

  • RayB, that's so great to hear from you, yes the thread you started has been so helpful.   I'm so sorry to hear your wife is going through cancer as well as [@bfg]‍ 's wife.   After all you've been through news like that hits like a ton of bricks.

    The hot tub in the conservatory sounds lovely!   That's one thing you have I'm jealous about!
    thanks for writing and updating us.

    Sally

  • OMG- RayB - big clapping emojis x 1000, 

    You are back and okay- you have been missed xx Seeing your post really made me smile today .Great to see you've done some good stuff, I won't mention the hot tub to my husband ! Give him ideas! Sorry to hear about your wife's ( and BFG's) troubles. What is it with cancer at the mo!!! It seems to be bloody breeding. 4 people in our road also recently diagnosed with some type or another!!
    Ah- gallstones- now that is something I am an 'expert' on LOL. mine was whipped out 2018! Mind you according to my GP, it was IBS for 6 years grrrrrrr, until I asked for a scan and , not just a 'bag of grit' a huge bag of marbles! Surgeon said post op that it was 'rancid' and years in the making LOL, nice description (:  no 'IBS'since had it out - funny that!
    We are pretty good- husband waiting for Haitus hernia repair, as bowel has gone wandering upwards and causing a cough, which he's had since a few days post op, but otherwise all quiet. He is back at work and doing good- although did have his flu jab on Saturday and feels whipped ):

    Keep smashing it and keep the faith y'all

    Hilts

  • Hi Mille , sorry can't remember if I responded or not .

    Got the exact amount out of husband and it was £180 total for the 3 of us. They / he did not insure for the the OC going forward as of course he doesn't have it anymore ( for now fingers x). He declared it on the form and that is the price they came back with. So seems once it has been dealt with it is not that relevant to the risk ( of them paying out) , if that makes sense.

    So your Kev will be in the same category I guess.

     let me know what you turn up.

    We have been to the US before and absolutely loved it, but first time with kids. We are probably going to do Orlando, gotta be done , we've done it, but one time offer with the kids and then out to the gulf coast for some R&R- for us. We are expecting the insurance to be a lot more!!!, but will go anyway.

    Keep the faith

    Hilts

  • Hi Hilts,

    Thanks that sounds pretty good. As I say we have insurance but they excluded OC so anything related to it isn't insured. Will see what T (ui) say. As you say fingers crossed they don't have it anymore so I kinda see where you are coming from but as you've said insurances are renowned for not wanting to pay out so if anything happened they may dispute it? Like you've said if you're in Europe it's easier despite the dreaded B word lol.

    Re the States yes we did Orlando/Florida pre kids then took lads when they were in their early teens. 2 weeks in parks but inbetween we hopped over to Coco beach for Kennedy Space Centre and also Daytona Beach. Then down the Everglades/ gulf coast and the Keys for a week. Key West was absolutely fab - so different a bit 'hippie/boho'. 7 mile bridge - amazing! Happy days!

    Any news on date for op? The Tapas meal sound good!

    I've been swimming today for the first time since this all started and I went to choir last night! 
     

    keeping the faith

    Milly

  • Hi Mille n'all, 

    Thanx- yep, date came through last night. Op will be THIS Tuesday- 9th nov!!!!. Sooooo quick- they don't mess about. Day patient.......apparently- although I guess it depends on what time he goes to theatre and how big the job is when they get in there, but all fingers xxxxx! Bad night last night with coughing, so can't come soon enough.

    Will update.

    Keeping the coughing Faith!
    hilts

  • Hi Hilts and all,

    That is quick which is good as hopefully it will all be 'done and dusted' before the festivities commence. It sound like a standard procedure but like any op you just want it over and done. 

    Lee I hope your meeting with the surgeon has been Ok and your dad gets his operation date soon.

    Sally has your husband had both his consultantations now?

    keeping the faith 

    Milly 
     

  • Hi Milly 

    We had a meeting with the surgeon today (only 1 person allowed in the room) but we managed to 'squeeze ' my Mum, Dad,  translator and myself all in!.

    The surgeon said pre OP in next few days then the surgery within next 14 days.

    He said they'll open my Dad,  take a biopsy and get results within 15 mins to see if it had spread - if it has then close my Dad back up and no surgery- if it hasn't, then the operation will last 8/9 hrs. The surgeon said hopefully no complications but quite possible.  He also said 4/5 days in icu then 2-4 weeks on the ward depending on recovery.  

    This all seems so surreal as for the last year since first diagnosis,  there was no possibility of surgery- now we are just hoping all ok when they perform the OP and what they find.

    Thanks for asking 

    Lee.