Living with N. E.T.S

Hello everyone I'm Steve who's caring for my wife who has fI've carcinoid tumors which are on her appendix,stomache,bowel and each of her aortic nodes. She was diagnosed two years ago this November and has been on sandostatin lar every moth since. I feel I  am constantly battling to get enough food and liquids down her on a daily basis.food and drink she used to like now doesn'the if there is anybody going through this or similar would like to her from them thank you for letting me waffle on good luck and chin up everyone cos everyone's different xx

  • Hi Steve. 

    I'm sorry to read about the issues that you and your wife are having with her diet. It sounds like it's a real concern for you. 

    Have you been in touch with NET Patient Foundation? They have a range of support and advice services for people living with NET. You can find their website here

    Alternatively we do have a team of nurses here at Cancer Research UK that you could call to talk to. 
    They are available Monday to Friday 9am to 5pm on 0808 800 4040. 

    Feel free to come and waffle here anytime you need to Steve! You're very wecome to use the forum to offload if it helps. 

    Sending our best wishes, 
    Jenn
    Cancer Chat moderator

  • Hi Steve 

    my partner has a neuro endocrine tumour of the pancreas which has spread to liver and lymph nodes. 

    I am also struggling to get him to eat and drink to maintain a healthy weight.   He says he cannot eat if he is not hungry.  He does drink Fortisip but that’s no help. 

    Joanne x

     

  • Thank you jenn its the first time I've not got a clue what to do I'm tired of having to battle her about food.Today she's had 4 rich tea biscuits for breakfast a slice of toast and a banana for lunch ( after a heated debate) every mealtime it's the same heated debate I am literally watching her dissappear before my eyes every day it's the same.. i hope I can see a time where we don't argue about it but i feel the only time this will happen is on her passing I belive. Time is short for all of us and I don't want to spend what time we have bickering about it every meal time

     

  • Hello Joanne sorry to hear about your partner have you tried complain it's equivalent to a light meal and have three flavours so  you can boost their calorie and mineral uptake  if they have them in between meals or as a temporary replacement.I got those drinks from chemist  at just over £6 a go and got all flavors they do she had one sip out of each bottle and didn't like them so drank them myself.lol don't work as I care for her but it's expensive to waste .I haven't got the resources to keep buying things only to be told she doesn't like them.I feel as though I'm slowly watching her disappear in front of my eyes .she was always a big girl(bit of meat on her bones) she used to weigh 27 stone she now weighs 11 it's upsetting to see her like this.I do hope you can find some common ground with your partner and I seriously wish all the best for you both kindest

     regards steve