Need Some Reassurance.

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 Hi Everyone!

So, another week has gone and now my husband has been told that he may need a nephostromy or stent fitted to help his kidneys drain. He was told at his last oncology appointment that a prior CT scan had shown a spread to his pelvis from his bowel and now they are worried that this will affect his kidneys. So, my assumption is that they will fit one of these stents or do a nephostromy and then put him back on chemotherapy or some other kind of treatment. He completed 4 cycles of CAPOX after being told that his cancer had returned after apparently getting it all back in January this year. In June we got the devastating news it had come back due to a rise in CEA markers and a CT scan confirming it. He tolerated his chemo up until midway through cycle 4 when he began to feel ill. His first 3 cycles he sailed through and because he was tolerating it so well, they upped the dosage of CAPOX I think to the maximum and it was during cycle 4 that he began to feel ill. His oncologist has taken him off his chemo treatment for now because his legs and ankles were slightly swollen, and this has shown he has fluid retention and so sent him away with a one-week course of water tablets which he has just completed. He was not originally for getting a nephrostomy done because this would mean having to endure another bag and he already has a stoma bag the stent means the tube stays inside him though so don't know if that will be an option. I think he saw how upset I was when he said he didn't know if he go through that and agreed to it because if he doesn't, there is the danger his kidneys could shut down altogether.   His kidney and liver functions and blood levels have been normal up until he went to his last appointment, and this showed a slight decrease in his kidney function. It is just so distressing to see him like this he is just not the person he was just over a month ago. Even going through the first cycles of his chemo he was his usual jokey and- may I say it, sarcastic self and I miss this. We usually take the rise out of each other and have a lot of banter going on between us and all that seems to have gone. I feel now that he is pushing me away also and I said this to him the other week we use to jokingly grab each other, and I went to do this earlier this week and he pulled away and I said to him `you are pushing me away now? ` and he said you know I would never ever do that. But silly things like I said to him the other day I need to get my hair done and he would be there with the line `make sure you get an estimate` and I looked at him and said `no wee jokes today` and he just shook his head and gave a wee smile. Everyday just now just morphs into one another and it just feels like we're back to being in covid again- god forgive me! Can anyone tell me please is it imperative that they should give some kind of post chemo treatment when someone has had an operation to remove a tumour?  When Jay (my husband) went for his follow up appointment back in February with the oncologist I asked this and was told they tend not to do it if it is not necessary and because it seems everything with him was clear they didn't do anything- not even as a precautionary measure and for this I am very bitter and angry because I read about a lot of people who have this directly after an operation to stop it coming back and now I wonder if he had got it done back then would we be where we are now. Even my sister who had breast cancer 3 years ago got radiotherapy after her surgery and she has been clear ever since. So unfair. Thanks. 

Vicky x

  • Hi

    Thanks for sharing this story, it does just go to show how complicated a treatment programme can be and the impact of course it has on us. Not at all unusual for our loved ones to try to protect us in someway and the feeling of being pushed away can be quite common. With my wife and I having been going through this for so long we now know we are going forward together and if anything made us a better couple.

    <<hugs>>

    Steve

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  • Thanks Steve,

    How do you both cope with this? Is it yourself going through treatment? Would be great to know. He's just gone to bed says he feels really tired. Doing that a lot just now but in saying that didn't go yesterday. He is really bored but mentally he feels he can't go outside on his own even with me with him. He just gave me the biggest hug ever there and that's a first in a few weeks. Thanks again.

    Vicky x

  • Sorry Steve just clicked on your profile and see it's your wife going through it. Keep forgetting you can click on the usernames and read profiles. Wow you have got a lot going on puts me in perspective. Autism is so hard to deal with let alone cancer and your own health worries too. God Bless you. Thanks for your reply.

    Vicky xx