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 everyone and [@Redski]‍  Redski cos you had your stomach removed and everyone else cos you're all so lovely.  We went to see the consultant yesterday for results of the staging lap, and pleased to say the cancer in my husbands stomach hasn't spread as far as they could see, so now they hope to do a total gastrectomy at the start of the New Year,  I'm sure I'll have millions of questions to ask when the time comes. He's not having chemo, I asked why and was told they (the hospital) don't give it to people over 75 as chemo doesn't work so well for older patients and just adds more stress. 
    So Martin now has 3 cancers kidney (had his kidney out 4 years ago) he's all stable there but with having yearly CT they found the stomach cancer and Non Hodgkin Lymphoma, the Lymphoma can wait a few months we was told yesterday. Phew what a lot to take in and I'm such a worrier it's a good job my husband is so positive.

    Have a really lovely Christmas and I'll be back when Martins in hospital. Thanks xxx

  • Hi Sue, that's really good news for Martin and you - thank you for coming back here and sharing. 
     

    Hilts is so good at covering everything for everyone with brilliant welcomes, summary of what's to come and reassuring those starting out. 
     

    If you think of any questions or want to know anything more about life without a stomach Sue, ask anything at anytime - I'm happy to help you guys out !

  • thanks so much for the kind reply hilts. 

    he has taken a bit of a turn. on monday they tried to stretch/push the tumour a little so a stent could be put in and we could try to get some food in, he hasn't eaten for a month now. after the procedure he stopped drinking and started to not be able to walk and hallucinate. we took him to a&e and he is still there. we are on the 7th bag of fluid and are giving him paracetamol via IV. the situation is:

    - there's a blockage in his liver 

    - his kidneys are failing 

    - he has covid and pneumonia (did chest x ray at bed)

    - blood pressure cannot get higher than an average of 85

    his hands and feet are cold and cannot warm up.

    just back from hospital for a short nap before going back. no idea what to expect from here on out and doctors just say the next 48 hours are critical.

     

    can anybody please guide me? 

     

  • Hi Ocean,

    Guidance- not really, just stick with him

    He sounds poorly- bless him. YOU  are probably feeling every emotion under the sun.

    What can you do at this time? Tuck him up, give him a good squeeze and just talk to him about whatever he fancies- everything possible is being done for him by the hospital, but your job is to sit with him and 'distract' him Tough call, but essential if you can. 
    A&E is not a very comfy place to pass the time, but stick with it
    Hilts

  • Ahh thanks [@Redski]‍ any info you could give me would be brill, I've not a clue what to ask, I guess when he comes out of hospital it'll be mushed up food for a few weeks, was there any high cal and protein food you could advise on, I've always been used to the low stuff.

    He has his dates now 5th Jan pre op and 11th Jan for the surgery, fingers crossed nothing gets cancelled. I was told by the lady on the phone that the pre op will take about 5hr, was yours that long.

    Im a bit worried about him not having chemo but they must know what their doing.

    Thanks and have a lovely Christmas everyone Xx

  • Hi all - not having a good time - been back in hospital since Saturday - looks like I'll be here for Christmas - having to cancel holiday - so gutted!! I'm too poorly for them to do the procedures!! They think the pain is a kidney stone now - what next.  Sorry to moan - so Happy Christmas everyone xxxx

  • Hi Andi, so sorry to hear your back in hospital, also had to cancel your holiday, I can understand about the holiday, we had to cancer last month, but what must be must be. As you know I'm new to all this so not much to say really as it's sure a learning curve. Martin has 3 cancers and I have bladder cancer but this cancer sure beats them all. I hope you get out of hospital before Christmas but if not I'm sure it won't be long after.. You take care Andi sending hugs Xx

  • Hi Sue, don't worry or fret too much about what you do or don't need to do once he comes home ... between my Wife and I we found our stride and worked it out as we went along and for us the stories of having to purée food etc didn't transpose into reality, we used COOK meals that were soft and saucy like their Cottage Pie and Shepherds Pie that I'd eat half a kids portion of and stop whether I was full or not, set a timer for 25 mins (allowing stuff to move and clear space) and then finish the other half of it etc.

     

    if you've any questions as you go, just ping us all here and we'll help you out. Across Hilts, Milly, Andi, DoogGreg etc there a wealth of experience and expertise here at transitioning out the other side of surgery !

    Andi, sorry to hear this but don't let it get you down. Focus on the pluses here ... you're going to be surrounded by people fussing over you there and in and amongst people ... yes, it might not be Tenerife but you're on a road to recovery and there will be many more Tenerife's to come for you ! Also, it'll hopefully get you back on track and feeling better faster ! Added you to our Prayer List !

    Thanks,

    Red.

  • Hi Andi,

    I was so sorry to read that you are back in hospital - not what you want but if it's needed to get you back on the right path it's the best option. The holiday will be there waiting for you when you have recovered and are in a better place to enjoy it more! I understand you must feel fed up anyone in your position would do but you WILL pick yourself up and the hospital will fix you! Please feel free to vent your frustration on here! 

    Sue - good news re your husband and you have a date for the operation. Redski has given you some good tips and I agree try not to overthink things. A step at a time. I did buy some small plastic containers to freeze small portions but as my hasband had a longer stay and could eat a bit more than expected I didn't use them much but still handy now for fruit etc.

    Ocean - I hope your step dad is stable and comfortable. It's obviously a difficult time and I agree with Hilts being there for him is the best you can do and the professional staff will do what they need to do as well. Ask them questions if you feel unsure about anything. 

    I wish you all the best Christmas you can have in differing circumstances and let's hope 2023 brings good health to us all.

    keeping the faith

    Milly