FLOT complete now surgery

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Hi everyone 

I completed my 4 rounds of flot at the end of November went for CT scan last weekend and got the call yesterday to say tumour had shrunk and surgery is 2nd week in January. Relieved and anxious to say the least at what the next stage is going to be and how long it will take to recovery? I’ve hit the Gym to build myself up and eating as much as I can. What can I expect and is there anything else I should do? 
Cheers everyone 

Sarah 

  • Hi Sarah 

    well done girl ! Your result is what I can only wish for !! Had my first FLOT and already feel an improvement second one delayed as low white blood cells but just want to crack on !

    wishing you well for your op in jan I gather it’s not easy but I’m sure you will through it where are you having it ?

    sending love and strength 

    tricia x

  • Hi Tricia

    It’s a journey no one wants to be on for sure. I also found that after the first round of flot my eating was so much better, no pain at all. I took magnesium supplements all the way through chemo and I’m convinced it kept my blood levels right. I’ll be having the surgery at the Derby Royal. I’ll be in for my Birthday too, the consultant said we’ll have a party on the ward and. I said I’m not sure you can call it a party if we all got feeding tubes lol 

    keep positive and strong Tricia 

    Sarah. 

  • Sadly I haven’t been able to eat since late august so everything has to go through my feeding tube ! Before this started I took a lot of supplements magnesium being one of them but the tube blocks so easily that unless they do a liquid I can’t take it 

    shame you in for your birthday I just got out from my months stay at Bristol BRI the week before 

    hugs

    Tricia x

  • Hi Sarah, 

    What surgery are you having? Is it the standard Ivor Lewis? That’s what I had in February this year. They’ve probably already told you that recovery will be long and slow. They’re not kidding. I reckon I’m back to about 70% now. Building up your strength and stamina is definitely the best thing you can do as you will lose a lot of that after surgery. Set yourself short term achievement goals in your recovery and don’t make any precipitous plans about returning to work, etc. I went on my first post-surgery foreign holiday in November. I wouldn’t have been up to the travelling much before that. If daily rest periods haven’t been part of your schedule before, they will become so. Don’t fight it. Listen to your body. And always remember that, whatever challenges your recovery from surgery presents, you are lucky to have been offered the option. I am grateful every day that I was given the chance of a curative pathway. Good luck for January CB

  • Hi Cool Blue

    thanks so much for the info - not sure yet what surgery it will be but guessing it be the Ivor Lewis. Just got to wait for consultant pre op appointment where no doubt I’ll get told everything. I’ve set myself a goal of returning  to work in September but will see how I am. Always good to have something to aim for. How long was your stay in hospital? I’m anxious about the whole thing tbh but so thankful that I’ve got the chance. I love food and eating lol so I’m sure that’s going to be a challenge in itself for recovery.

    so good to hear how well you are doing 

    Sarah 

  • Hi Sarah,

    • I was in hospital for 16 nights altogether, half of them in ICU as I had a bit of a complication. Physios will have you up and moving the day after your surgery. It’s quite an operation trying to manage all your tubes, but the nurses will help. Your relationship with food is indeed something that will have to settle into a “new normal” as your body becomes accustomed to its new internal plumbing. The dieticians will give you plenty of advice for the first few months after your surgery and it is likely that you will come home with a feeding tube for the first few weeks. There are plenty of challenges ahead for you (no point in sugar coating it) but, with a positive attitude and a good support team by your side, you can get through it. A year ago I was where you are now and, although 2024 is not a year I would ever want to repeat, I’m looking forward now to a much better new year. Best wishes, CB
  • Thanks so much - it’s good to hear from people who have come out the other side from a club none of us wanted to join. 
    Sarah 

  • Hi Sarah 

    I'm 13 weeks post Ivor Lewis surgery now and as CB said it's no walk in the park! I actually did well after the operation, was up and about the next day and climbed a flight of stairs on day five. I was able to eat puréed food after a week so was sent home with the feeding tube but never used it.

    I'm on my last doses of post op FLOT at the moment and tbh this is quite hard. 

    Wishing you all the luck in the world 

    Anthony x

  • Hi Anthony

    thanks so much for that - like I said to CB it’s so good to hear from people who have or are going through this same journey. That’s remarkable to hear that you did so very well. Well done you! Are you finding the flot harder to cope with this time? This forum has been a god send to talk to others in the same situation, at times you feel so alone. 
    hoping your recovery continues to go well for you and you can look forward to a much happier new year 

    Sarah