New journey

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Hi all

Recently diagnosed with T4n2m0 tumour and start FALFOX + Nivolumab on Monday 2 September at Swindon Great Western Hospital. Maybe I might meet someone of you here. At the moment, surgery is unlikely due to size of tumour. I am unable to swallow anything at the moment I have JEJ tube fitted and now managing to get nutrients in. Hopefully I will be swallowing soon when treatment starts.

Tom

  • Hi Tom 

    Sorry you're on this dreaded journey!  Hopefully you'll start to feel better now that you're getting some nutrients in. I found my swallowing difficulties reduced after a couple of rounds of chemo (FLOT). Hopefully it will be the same for you. How are you otherwise?

  • Hi suzi

    not being able to swallow for me is the worse of my symptoms. I do try to swallow fizzy drinks even though I end up regurgitation just for the taste. Maybe small amounts may get through. At least I don’t have any other pain or symptoms. I am getting up to 2100 calories a day by jej pump which should continue during treatment as I understand people loose appetite.

    Tom

  • Hi Tom. Im sorry to hear about your recent diagnosis. It’s good to read that you do not have any other symptoms. Thankfully the jet pump will be getting the all important calories in for you. I also found that once my treatment started I could no longer feel any discomfort and was able to swallow better. I found that walking every day really helped my mood and I had read somewhere that regular exercise also helps with a cancer diagnosis. Anything where you can take control is good. 
    I hope the treatment goes well Tom and if you’re in any doubt about anything, do use this forum. It’s so good to have a link with people who understand. Take care. Julie

  • Hi Tom 

    To be honest,  it's only recently that I've been able to manage fizzy drinks.  Perhaps just a sip here and there? I agree with Julie, walking is really good for your mental health plus physical health. There is emerging evidence that exercise helps the immune system. I use this idea when i don't feel like exercising ;-) You just need to pace it so you don't overdo it though. I used to have wotsits for the taste after surgery and i remember just licking crisps for some flavour after surgery when i was still on fluids. The 2nd September will be here sooner than you think.  Hopefully within a few rounds you can eat something.

    Take care,

    S

  • Hi Julie and suzie

    i am walking at least 1 mile to shop every day and I was given a ‘power breather’ after a had laparoscopy the other week so I am somewhat active until I am on feed which takes about 12 hours. I can’t sleep yet on feed. Thanks for kind words and advice 

    Tom

  • Hi Tom

    Welcome, and thank you for taking the first steps with your post, and sharing some of your journey, there is a lot of support here, and I hope you will find that after your first treatment your swallowing will improve. 

    The Macmillan Team are here for you too, if you have any questions or private thoughts you would like some support with, you can find there number in my signature. 

    Good Luck 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi all 

    Getting my line put in today. Had my last soak in bath for a while. Still starting my chemo and immunotherapy on Monday 

  • First day at chemo went ok. Now at home with 46 hour pump. My cousin is looking after me on my first treatment just in case. funny enough, my laparoscopy and jej scars has suddenly dried up an no longer tender. Am feeling slightly nauseous as before chemotherapy.

    Tom

  • Hi Tom,

    Your treatment journey begins...Here’s to it reducing the tumour! Have they given you supportive drugs - for nausea, steroids, etc.? I found them useful. It must be tricky found stuff if your feed is during the say. I managed to do it over night but it did affect my sleep. Do let us know how you get on.

    Wishing you all the best.

  • Hello Tom,

    Just wondering how your treatment is going? 

    Best wishes,

    Lorraine