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Nephrostomy

VickyM21
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Hi Everyone!

So, Jay had his telephone consultation with his urologist yesterday and he said that his kidneys have swollen and now they are talking about a nephostromy or a stent to be put in to open them up. He took the call himself so I don't really know if it is just one kidney or both. Having a nephostromy means that he would have to endure another bag and he already has a stoma. They said because of the cancer present in his pelvis this can press and block valves I think that lead to his kidneys and therefore they won't drain properly. He is against having more tubes coming out of him but there is no alternative apparently and there is a risk his kidneys could just shut down. I said to him last night I want him to have it done in fact I want them to throw everything they have at this, but in the end up I suppose its his decision and it may look as though I am being selfish, but I want him here, I want him alive , and I want him to see our granddaughter go to school as he said he is determined to do and I think he still has a lot to live for. I said to him about getting it done and he wasn't sure and then I said `do you just want to die`? and he said `well i am going to eventually`. Today we were out getting some shopping I went in to the supermarket. Christmas Trees decorations everywhere but I'm just not feeling it I just want it all to go away. We came home and I came into the house came up the stairs and sat down and just broke down. He came in and said to me I need to stop this and that it is dragging him down and I have nothing to cry for. I then said to him `I do if it means losing you` because you don't want to do anything about this. He said he didn't say he didn't want to do anything about it and is waiting until we see the oncologist again next Thursday and I think he saw how upset I was and said if it means another bag i'll go and get it done. It seems they can't start chemo again I take it until this bag is in place because the chemo may do harm to his kidneys. I'm 60 years old this Monday and couldn't care less. It's supposed to be a milestone birthday celebration but unfortunately for me there's nothing worth celebrating. Our son had booked a birthday dinner for us all on this Saturday night for me but phoned today to say that they needed to cancel because our wee granddaughter is ill. She has hand, foot and mouth disease?? it's something I think along the lines of chicken pox and causes her to have a very high temperature and she has been vomiting a lot and has a rash all over her body. I think it is a child's disorder and it's something that takes it's course and lasts 7-10 days. I'm glad in a way it's not happening because I would probably break down again in the restaurant and that would be embarrassing for them all. It's just one thing after another and I feel we are just not getting a break at all!! Each day just now just morphs into one another it's like god forgive me covid all over again and I just want it to stop.

 

Vicky

  • Hello Vicky

    You have so much on your plate at the moment! It's not surprising that you're feeling overwhelmed and emotional by it all. 

    I can see that you've already posted in our Ask the Nurses topic area and that Nurse Julia replied with some information about the surgery options. 

    You're obviously juggling a lot at the moment and I wondered if you'd reached out to anyone outside of the family for some support. I know that many members have found it helpful to talk with someone who's not directly involved with their situation. If you wanted to speak with one of our nurses you're most welcome to give them a call for some support. they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. Alternatively, you could contact your local Maggie's centre or Penny Brohn for some support but hopefully the appointment on Thursday will bring some clearer answers for you both. 

    With regards to your granddaughter, bless her. Hand, foot, and mouth is a common childhood illness, and whilst not pleasant hopefully she'll be feeling well again soon and able to visit to give you a big hug. I know that you don't feel like celebrating on Monday - I think most people would be able to understand that. Hopefully you and Jay will be able to find a way to at least mark the occasion quietly in the house together. 

    It's obviously a really difficult time at the moment Vicky so keep in touch with us here on the forum. Post to ask questions, offload your thoughts and feelings or just connect with others who understand how hard it can be when a loved one has cancer. We're here for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Hi Jenn,

     

    Thanks you so much for your reply. I am trying to be as positive as possible but finding it really hard. I come her and connect regular with your colleagues at MacMillan and I go on their forum and some can be very encouraging as everyone is more or less going through the same journey. I just cannot believe that one year ago today we were looking forward- well not looking forward but giving us hope that the cancer was going to be cut out in January (this year) and it was sucessful then 6 months down the line it was back. He didn't get any post chemotherapy because they said it wasn't necessary and now I am thinking if he got that we may not be where we are now.   And now, we are back to square one with a fight on our hands again and I am worrying because he is getting no chemo treatment just now his cancer will be spreading further but I am assuming until he gets something done with his kidneys they won't do anything with that at the moment. Jay's appetite has waned slightly because he is on water tablets to get rid of his fluid retention they are making him tired and his mouth is very dry and he is drinking load of water (which I take is the purpose of the tablets) he said everything tastes the same and said when he drinks water from plastic bottles you eventually begin to taste the plastic and its hard seeing him not eating at one time he would have his evening dinner and then be looking for dessert. These days he hardly clears what's on his plate he's always loved his food and is a big chunky bloke well was I did a weight conversion and as it turns out he's lost just over 3 stone in weight he was 22stone and now down to 19. Great he's lost it, because he could have been doing with losing it but not this way and I just don't get that he was doing really well with his chemo up until midway through cycle 4 when he started feeling ill. His dosage was upped in cycle 3 as he was tolerating it well and now this. Just so cruel!  Thanks again. 

     

    Vicky 

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