I’m new to this and need some help sorry for the long post.

Hello, my name is Susan, my husband Alex is in the final stages of his life. He has bowel cancer with lung and liver mets. He was diagnosed in august 2018 and initially the prognosis was good, although he'd had to have an ileostomy which he had a lot of issues with. He had 25 cycles of radiotherapy and 12 weeks of chemotherapy, which they thought would have good results, he was really fit and healthy at the start of the treatment. He was great when he had the scan after that, was expecting to have a resection and reversal of the ileostomy. We were devastated to be told that the cancer had spread to lungs and liver, and prognosis was 6-12 mpmths. He's persevered though  another 3 cycles of chemotherapy that has decimated him, but has developed sepsis and an infection which is not going away. He's on lifelong antibiotics, blood thinners for a portal vein thrombosis, dexamethozone to give him some energy. I know he's at the end of his life, he's been referred to the hospice, and they're brilliant, but he's not accepting that he's at the end of life. He's very bitter about his original diagnosis because he feels he should have been referred earlier although the oncologist said his cancer if very aggressive and it probably wouldn't have made much difference. He doesn't want to die , and I can understand that, but I don't know how to help him. He veer angry and bitter, and taking it out on me a bit , which I can deal with, although I disappear for a bit for a cry now and again. How can I help him to accept that he's at the end of his life life without him thinking I want it to be the end of his life? If I  could do this for him I would, I hate the pain he is going through. What can I say to him? 

  • Hi Susan... and welcome ....

    You sound awesome and so kind ... and your doing a grand job ... the thing most of us want is a hand to hold ... and know that the cancer will make him fustrated and a tad angry ... when it starts upsetting you , just keep in mind it's not him, it's the cancer ... so you do well, take yourself off and let it all out ...

    You know it's not such a bad thing not acknowledging it's nearing the end of life .... I'm sure at some point, he'll know .. so I wouldn't worry if he still appears hopeful ... just do what your doing .. and take each day at a time ... and know , there's no right or wrong way to be ... we just do our best ... that's all we can do ... so hold on in there .. you can always come here and chat bout anything really ...so look after you to, and sending a vertual hug.... Chrissie x

  • Thank you Chrissie, your response is such a help. I feel so helpless, and guilty that he has to go through this. We had to speak to nurses today as he is so weak and getting weaker every day. They were fantastic, and gently suggested he is moving to the next phase of this horrible disease. He's much calmer now, still determined to hang on as long as possible but more accepting of the prognosis, while still wanting to fight as hard as he can. 
    Thank you for your kind words, it helped me so much and helped me to help Alex. 
    Happy new year to you, I hope it's a better one for us all

    Susan xx

  • Hi Smiffy, 

    what a beautiful, moving post.

    I salute you and your courage.

    What can anyone say. I have no advice or words really. I think you summarised for all of us the 'natural' process of dying and bereavement. You sound utterly in the know.

    i remember, from my nursing day (a long time ago) we were taught the 'stages of dying and bereavement' written by 'kubler-Ross. I am sure it is these days on line, it might shed some light on what you feel. Anger is very much one of the stages, of which there are (apparently) five which wax and wane and are not in any particular order- as I remember, they are Denial, Anger, Bargaining, acceptance - and 1 other I can't remember, sorry.

    I hate to use the word , but you sound completely and utterly'normal' whatever that is !!! (:

    best wishes

    H

  • Hi Susan

    I've read the previous 2 posts which sounded helpful.

    I think if you can cuddle together and hold hands as much as possible during the better moments and in the moments of cancer anger gently tell Alex how much you love him and are so proud of him for being so brave and strong. I'm sure he knows but it's these times it helps to be gently reminded. 

    Please try to fit in some time for yourself even if it's just a bubble bath or a cuppa with a friend for support. 

    I feel very proud of you as a fellow human being as you are doing an amazingly loving job as a wife and nurse. 

    For what it's worth Susan, My dad passed six years ago from the same things.  He was given 6 months and introduced to palative care and one day a week at the hospice, then a nurse said to him, Harry, Best advise I can give you is eat as much good food as you can. Dad lived a further 3 years.. 

    You will both be in my prayers. 

    Best wishes and a big hug

    Kathy

  • Thank you hilts for your kind words, it has helped. I looked up kubler Ross, he is somewhere between depression and acceptance.  Not sure where I am! 
    s

  • Have a google of kubler Ross 'on death and dieing. 
     

    it's about the process everyone goes through. 
     

    the first phase of helping anyone is to understand the process they are going through, and to support them through each stage. 
     

    also remember, what you are going through and will go through is worse. You need support through the process as well... so make sure you get help. 

  • Hi Smiffy.
    i remembered the 5th ( at about 2am!) it is depression.

    i wouldn't look too much at what 'stage' you are at.

    Over the last 5 months, I have probably experienced all 5 in one day!

    I kinda came up with a (what I thought was) funny line to describe what I felt sometime because I didn't know how I felt! "Somewhere west of ****ed" . What else is there to say. 

    Someone said previously to get hand holding etc. Indeed , get into that bed/chair , watch rubbish on TV, talk about rubbish, eat rubbish, do what you like there are no rights and wrongs . 
    Best wishes 

    H
     

     

  • Hello Kathy, thank you, Alex has been so positive throughout his treatment, and suffered the worst side effects and disappointing results from every one of them. He's been amazingly positive throughout it all, but I think he's now had enough of it all. He's fought so long and so hard, and endured horrendous consequences of his treatment, I think he's had enough of it all. As much as I know he doesn't want to leave me, I think he's at the point where he's suffered enough and it's his time. He's been incredibly brave for my sake, and even now he's more concerned for me than his self. He's so tired just now, can barely eat or drink. All I can do is help as much as I can. 
    xx
     

  • Hi there ..

    My heart goes out to you at this time ... and hopefully it's helped comming on here, as there's so many kind people that will help you through ...  you should be very proud of your self ... and I'm sure down the road, you will be able to help others with your kindness too ... 

    This is gonna be a hard road for you to walk .. at times like a rollercoaster.... some times feeling strong... and sometimes crashing down ... it's o.k to feel anything ... or sometimes numb ... there's no right or wrong way through this ... 

    I lost my granddaughter a couple of months ago .. she was 18 to cancer ... it comes in waves ... and looking back she was braver then brave ... and had 7 months of chemo etc ... yes I'm glad she's not suffering any more ... but oh my, how I miss her ... so all we can do, is get through the day .. whatever it brings ... and when it hurts too much .. we can come on here and share with others who have trod the path before ... so I'm sending you another vertual hug.... as we can't get real ones ... so these are the next best things ... take care of your heart ... Chrissie  

  • Chriss, I am so sorry for your loss, to lose someone so young is heartbreaking, I've been in that situation, grief for such a young life lost is so much more than more for a grief for a life well lived. 
    susan ️